When I read Kathleen Stock’s recent article asking why young women are using walking sticks, I found myself getting increasingly angry.

Then I found myself asking, why has one women’s opinion upset me so much.

Perhaps it’s because I recognised something in the argument that has followed me for most of my life: the suggestion that perhaps I cannot quite be trusted with my own instincts.

Stock’s argument is essentially that some young women (she targets Gen Z), may be interpreting ordinary bodily sensations through the lens of illnesses they have encountered online. She talks about social contagion- this idea that behaviours, beliefs, emotions and even symptoms can be spread through groups of people.

And I actually think social contagion is a fascinating idea. It has been witnessed in the past.

BUT, and it’s a big but, I don’t think we should only look at the ways it can make us sicker. I think she is taking a very complex issue and coming up with a false conclusion.

Because if we are going to accept that humans are social creatures who are influenced by the people and environments around us, then surely we have to accept that this influence can go both ways.

Fear spreads

Anxiety spreads

Negativity spreads

Racism spreads

Sexism spreads

Ableism spreads

But so do hope, courage, compassion and empowerment.

So perhaps the question isn’t just: Are young women becoming ill because they are influenced by one another? Perhaps we should also ask:

What if they are becoming BRAVE because they are influenced by one another?

And I think that makes for a much more compelling article.

I was sick before I joined the groups on social media

I want to start off with my own experience because it’s the only thing I know for sure.

I was sick before I joined chronic illness groups or saw them on social media. I didn’t see someone with chronic pain and decided that I wanted that to be my story. I didn’t read about ankylosing spondylitis online and convince myself I had that.

I had symptoms for years before I even had a name for what was happening to me, 20 years in fact. I was told repeatedly that it was just anxiety.

And this is where I think the conversation becomes complicated. Yes, the symptoms of anxiety can overlap with symptoms of illness and chronic pain. Symptoms such as: dizziness, fatigue, a racing heart, brain fog, breathlessness, to name but a few. These things can have a psychological cause, BUT they can also have physical ones. Similar does not mean the same. Similarity does not equal causation. Anyone who has done GCSE science knows that.

But it becomes complicated, like a chicken-and-egg situation. If a doctor keeps telling you your symptoms are anxiety, you may begin to believe them. You become anxious about your symptoms, which can create more physical sensations. And suddenly it becomes very difficult to know where one ends and the other begins.

But sometimes the original problem really was physical. It was in my case. Eventually I was diagnosed with ankylosing spondylitis, 20 years after the symptoms started. By that point, I already had permanent damage to my spine and pelvis.

But not only was I damaged physically, it left an emotional scar too.

I sometimes wonder what might have happened if somebody had listened earlier. Because being told to ignore your body not only damages your body, but also your relationship with yourself. We begin to doubt our own perception.

And this worries me beyond the chronic illness scope, because what if we teach girls from a young age that their bodies are unreliable messengers? What happens when we teach them that pain should be endured, that discomfort should be ignored, that being ‘difficult’ is worse than being uncomfortable, and that their instincts are less trustworthy than somebody else’s opinion?

We aren’t just teaching them to ignore stomach aches and boo boos. We may be teaching them how to override themselves and our instincts- the very same instincts that keep you alive, that help you survive, that help you know when you are unsafe.

Those lessons follow her into her work place, her friendships groups, her relationships. And we all know how that can turn out...

Society first told me to silence myself. Then the really insidious thing started to happen, I began to do it myself. Society’s voice became my voice.

I learned to question my own pain. To wonder whether I was being dramatic. To push through. To feel guilty for needing help. To feel deep shame in resting.

And perhaps that is a social contagion too? Perhaps sometimes the thing we catch from society isn’t an illness, but the belief that we aren’t allowed to be ill- a deeply human part of life.

So what do we learn from the people around us?

All of this has affected me so deeply, and the reason I have been so quiet of late, is because I have been studying to become a counsellor. Last year I completed Level 2, and through these studies I can see just how much of ourselves is shaped by others.

Our childhoods shape us. Our relationships shape us. Our culture shapes us.

The messages we repeatedly hear about ourselves become part of how we see ourselves.

In Level 2 of the studies, we spent most of that time trying to unravel all the biases and prejudices we have picked up along the way- both the conscious and the unconscious, so they don’t become barriers to our listening. We aren’t born with a fully formed understanding of the world, we learn it.

So if ideas can spread socially, why are we so interested in the possibility that women are catching illness from each other, and not more interested in the possibility that women might also be catching courage?

Maybe I see another woman using a walking stick and think ‘Oh. She isn’t hiding it. Maybe I don’t need to hide either’.

Maybe I see someone talking openly about their illness and I think ‘Maybe I’m not imagining this’.

Maybe someone else’s story doesn’t give me their illness, but maybe it gives me the language to describe my own. There is a difference.

Are we looking in the wrong direction…again?

Stock actually asks an interesting question in her article ‘Why does this seem to be particularly affecting young women?’

But, she missed the mark by miles. Instead she goes down the overdone and quite frankly boring route of, it must be the woman’s fault. Instead, she should have asked ‘What is happening AROUND these women?’ Because yes, we aren’t raised in a vacuum.

Gen Z has grown up through a pandemic (which she totally forgot to mention). They are entering adulthood in a world of economic uncertainty, impossible housing costs, social media, political instability, climate anxiety, loneliness and enormous pressure to succeed and look a certain way.

That doesn’t mean these things cause chronic illness. Yes surely they can influence our nervous systems, our stress levels, our relationships with our bodies, our mental health and the way we understand what happens to us. BUT perhaps the women are not the problem. Perhaps they are the canaries in the coal mine. Maybe they are telling us something about the environment we have created.

Maybe our bodies are a reflection of our culture in some ways. And I don’t know about you, but I think that would have made for a far more compelling article.

The walking stick

If you are still with me, thank you, bear with me! But I just can’t stop thinking about the walking stick. Stock sees it as some kind of prop to say ‘Oh look at me I’m special’. BUT, what if it’s actually a tool? What if the walking stick isn’t saying ‘Look at me, give me special attention because I’m disabled’, what if it’s actually saying ‘I’m still here. I’m still going’.

And that is what I see when I look at many of the women I have met through chronic illness communities. They aren’t giving up. They are adapting.

They are figuring out how to live in bodies that don’t always cooperate. They are using whatever tool they can find to keep participating in life. And perhaps seeing someone else do that gives you permission to do it too.

For years, disabled people have been expected to hide their disabilities, including when they aren’t visible disabilities.

They throw out the age old lines ‘You don’t look sick. You walked here yesterday, why can’t you do it today. You look fine, bla bla yawn bla’. Not understanding the complexity of illness.

So perhaps there is something quite radical about a young woman walking through the world with a stick and not apologising for it. She is saying ‘This is what I need and I’m continuing life anyway’

That’s not a weakness, that’s adaptation.

What social currency?

One of the parts of Stock’s argument that I found particularly annoying, was the suggestion that people might receive some kind of social currency from being ill- attention, sympathy, special treatment or exemption from the pressures of life. I literally had to laugh out loud to that. Tutting so loudly that my dog looked up at me in confusion.

I kept thinking ‘What bloody social currency?’

Because, if you actually speak to many people living with chronic illness (which Stock didn’t), you hear a very different story. Before they became ill, many had careers, friendships, financial freedom, holidays, future plans.

Then they became sick.

And suddenly they were losing income. Losing independence. Losing friendships. Cancelling plans. Being frightened of the future. Spending hours researching and trying to get medical appointments.

They were learning how to navigate a healthcare system that often gives you medication but very little help with everything else that comes with becoming chronically ill.

Where is the social currency in that?

I myself barely see anyone these days. No one comes to visit anymore. My world has become a lot smaller. I don’t feel special. I feel lonely.

When I was spending most of my nights researching, trying to find a name for my symptoms, everyone else was moving on with their lives. Getting married, having children, getting ahead on their careers, saving money, enjoying hobbies. I was left behind.

And yet, when I listen to other women with chronic illness, what strikes me the most, isn’t how much they pity themselves. It’s how much they keep going despite of it all.

Of course, they have their bad days, as do all of us, but they adapt.

They learn.

Then try again.

They help each other.

And I am constantly amazed by their strength and empathy. You probably won’t ever see them on the front of glossy magazines, but I have learned more about resilience from them, then I ever learned from magazines telling me what a woman is supposed to look like.

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The gap in healthcare

There is a deep void in healthcare when it comes to chronic illness. I’ve seen both sides. From both being a Nurse and from being a patient.

You finally get the diagnosis (sometimes, if you’re lucky, if you can call that luck?)

You get given a prescription (sometimes…)

And then what?

What about the grief…the confusion…what about losing the future you thought you were going to have? The friendships you lose…Work…Sex…relationships….money…identity.

What about learning how to live in a body that has suddenly become unpredictable.

Who teaches you that?

Very often, absolutely fucking no one.

So of course, we look sideways, we find one another, we swap advice. We tell each other what doctors didn’t have time to explain. We say ‘This happened to me too’.

And sometimes that is the FIRST time someone feels believed.

Maybe chronic illness communities aren’t evidence of social contagion creating illness, BUT maybe they are filling a giant fucking hole that healthcare and society has left behind.

And then there in the question of women….

Stocks article is aimed particularly at Gen Z women. I myself am a millennial, but I don’t want the next generation of women to inherit the same bullshit we did.

Because I keep noticing something. The same thread seems to run through women’s history. Every generation seems to give it in a different disguise, but the message is the same:

Once a woman was hysterical

Then she was neurotic

Then she was oversensitive

Then it was all in her head

Then she was anxious

And now perhaps the language is:

You’ve caught the idea from the internet you silly little girl.

The terminology changes, but underneath it all is the message sent to young women saying:

Don’t trust yourself…Don’t trust your body…Don’t make too much noise…Don’t ask for too much…Don’t take up too much space…Don’t make other people uncomfortable…..

And if you hear that enough times, you don’t need society to say it, you start to silence yourself!

I know, because I’ve done it. And I don’t want the next generation of women to spend half their lives learning to distrust themselves and the other half learning how to trust themselves again. What a deep waste of potential that is.

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We should be careful about the stories we tell about other people

I have found myself wondering what shaped Stock’s views. What did she grow up around? What messages did she hear? What experiences influenced the way she thinks about illness, women and resilience? I ask myself what social currency is she gaining from writing that article?

But then I catch myself. Not out of some moral sainthood and trying to be the better person, but because I actually don’t know. And perhaps that’s the point.

We should be careful about constructing psychological explanations for other people without evidence. The same applies to people with chronic illness. We shouldn’t assume we know why someone uses a walking stick because we’ve seen them on the street or on TikTok. We shouldn’t assume we know what someone gains from being ill. Or assume we know whether their symptoms are psychological or physical simply because they resemble anxiety.

And having an Oxford education, an OBE and a platform like the Times, doesn’t make someone right.

My own doctors were trained for decades and yet they still missed my diagnosis.

Medicine is an incredible thing, but it’s also a human thing. It gets things wrong. It changes all the time. It learns. It adapts. But it takes a while. It also doesn’t help that we’ve only just started to properly research women’s bodies in recent years!

And we are still all living with the aftermath of a completely new disease in Covid, with huge amounts we still don’t understand about chronic illness and the relationship between body and mind and pain.

That uncertainty should make us humble and curious and encourage us to put our thinking caps on. To band together as a society.

Not to throw blame on the vulnerable and be so dismissive.

Maybe there is another kind of social contagion

I don’t want to dismiss the possibility that social media can influence the way people understand their health. Of course it can. Some people will misinterpret symptoms. Some people will become frightened by information they find online. Some people identify with diagnosis that don’t apply to them because they are so desperate for an answer. We should talk about all that, BUT we should also be able to talk about the opposite.

What happens when someone who has been ignored, finally finds language? When someone who has felt ashamed, finally sees someone else refusing to hide? What happens when a woman who has spent years apologising for taking up space, sees another woman take up hers?

Maybe that spreads too.

Hope spreads. Courage spreads. Empowerment spreads. Stories spread.

And sometimes that story doesn’t make you sick. Sometimes it gives you the courage to keep going.

So I don’t think the answer is to tell women to put down their sticks and stand on their own two feet.

Perhaps the answer is to ask why they needed the walking stick in the first place.

And before we decide that the problem is the woman, we should look at the world she is trying to walk through.

Because maybe the most dangerous social contagion isn’t believing that you’re sick.. Its believing that you aren’t allowed to be sick.

And maybe the greatest message we can give young women is:

I believe you.

I believe you.

I believe you.

Let that message spread like wildflowers.

Lots of Love and Hugs, Amanda x

P.S Let me know how that Times article affected you in the comments x

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'The over-domesticated woman is one who has been trained to be too nice...She has been conditioned to ignore her own deep instincts, to remain quiet when she should speak, and to distrust the very messages her body and soul are sending her'- Clarissa Pinkola Estés 

Hi all,

Sorry it’s been such a long time since my last post. I really didn’t mean for it to be this long since I wrote to you all. I apologise for all the messages that have gone unanswered, I didn’t mean to be rude!

To be honest with you, I’ve been struggling quite a bit these past few months. The biologic medication that I was on for the ankylosing spondylitis has stopped working, which has meant the pain and fatigue has come back with a vengeance. It feels like I have a new pain or aliment spring up each day now and the fatigue is making me so breathless.

I’ve tried countless times to reach out to my Doctors and change my medication, or to get any advice at all really, but it’s taken me 6 months to even get an appointment with them. When I finally do get an appointment, it keeps getting cancelled and pushed back. This has made me feel very dismissed and alone. It feels like I have gone right back to the very start where I felt like no one was listening or cared. I can’t help but to feel I have taken two steps forward and twenty steps back kind of thing. Constantly having to beg for even the smallest scrap of help from anyone just feels exhausting and demoralising.

I think I was relying on this biologic medication to make me feel better, and because it hasn’t, I just feel so disappointed and like all the hope I had for a better life has dissolved out of my body. I had so many great plans for this year. As you know, I was feeling quite good at the start of the year. But all those plans had to be put on hold. I’ve barely seen anyone, or done anything. It feels like another year of my life has been wasted due to this horrid disease. I know there are other medicines to try, but I think doubt has taken over and clouded my view of everything.

This has hit me hard and I have been trying to get myself out of a rather deep depression. I started off trying to do all the usual things that have helped me in the past; therapy, medication, being creative, writing my journal, getting out with my husband and pup etc, but nothing has been sticking and that has panicked me. I literally have zero motivation in me to do the things I know I need to do to get out it. I guess that’s why depression is so insidious...

I feel very overwhelmed, like every tiny decision or task is taking everything I have to do it. Each day is incredibly hard to get through. So each and every time I went to write a post, I felt a surge of panic and felt it was all too much, and I put it off. So I’m sorry about that, as I know there were some very dedicated readers out there who have followed me from the start.

I’ve noticed that when I get depressed and anxious I isolate myself. I don’t want to be a burden to those around me. I feel ashamed that I’m not coping. I feel I’m not being grateful enough of the good things I have in my life and people will judge me for that. That’s what depression does. It warps your thinking. It makes you feel like no one else would understand, or even care to understand what you are going through. It convinces you that you are a piece of shit and that you deserve every horrible thing that is happening to you. It tells you to hide away. To mask. To pretend. To give up trying for a better life.

But of course, as most of you know, isolation is the worst thing you can do when you have depression. It starts to eat away at you and convince you that you are unworthy of love. It knocks your confidence and makes it so damn difficult to re-join the world.

So today, after much convincing, my therapist has encouraged me to write something to you all. Just get something down, not overthink it. Just as a way of shining a light on the depression. It feels less scary when it’s out in the open and shared amongst friends. She said it would be a way of reaching out and connecting with the world again. She said ‘I bet more people than you realise will relate to all that you are going through’. Is that true? Do you get phases like this? How did you pull yourself out it?

So here I am, reaching out a little shaky vulnerable hand to you all. Asking you to forgive me that it’s been so long since my last post. Perhaps you can convince me to pop my turtle head out from my shell and to start re-joining the world again.

I also have to remind myself that I haven’t wasted this year. There has still been some positives. For one, our cheeky Labrador pup Winnie is growing up fast. She’s now nearly 9 and a half months old!! It’s been a bloody hard challenge raising her. More tough than I ever expected. There is so much training and dedication that goes into raising a dog. I guess the fatigue has added an extra challenge to that, but it has been worth it. Each time she snuggles up with me, or gives me a little lick and kiss, it makes me feel better. She has forced me to get up and out of bed every day, and to get out for walks, even when I really didn’t feel like it. She makes us laugh on a daily basis with her mischievous and playful nature. She has kept me company through one of the most lonely and isolated times of my life. Thank goodness for dogs hey.

I’m also an Auntie now. My brother and his girlfriend just had a little boy and he’s perfect.

So whilst there has been some highlights, I’m really looking forward to getting this year over with to be honest. This rather low point in my life has forced me to figure out my priorities and what I want from the rest of my life. I know that I always feel better writing and connecting with like-minded people, so one of the first things on my to-do list is to come back on here to write. It won’t be weekly as it was before, but ad-hoc, when I fancy it or have something I want to say. Nothing kills creativity and motivation quicker than a big dollop of pressure right? But it feels good to be back.

So what have I missed??

How have you all been? What have you been up to over the Summer? I’d love to hear how you have gotten over a particularly rough time in your life. Any tips you care to share?

I’ve missed you!

Looking forward to reconnecting with you all.

Lots of Love,

Amanda x

P.S It’s been so bloody long since I’ve done a post, I have literally forgotten how to use Substack haha, so do bare with me if this post comes out a bit weird…

Hello!

Firstly, I just want to say I’m SO sorry it’s been so long since my last post. Thank you for all the lovely messages checking in on me, I do appreciate them.

This post is just to say I will be taking a break from Substack over the Summer, but hopefully I will return once things have calmed down a bit in my life.

You see, things were going well with the medications, so well in fact, that I thought it was the perfect opportunity to fulfil one of my dreams…

I always said to myself that if the medications worked and I was finally getting some of my energy back, I wanted to start grabbing life back. All the things I thought about doing when I was stuck in my bed with pain and fatigue, I wanted to start doing.

And one of those things was to…. own my very own puppy!!

I’ve always loved dogs, but it’s never been the right time to own one. But now I’ve started to have more energy and time to dedicate, I thought why not!

I thought it would be lovely to have some company around the house and a dog would encourage me to get regular exercise which is so desperately needed with my condition, to stretch out and keep those joints moving.

A perfect opportunity came up, a black Labrador puppy needed a home and we have been in non-stop puppy mode for the past 6 weeks (wow that time has flown by!).

Here she is, her name is Winnie! She is in equal parts an absolute little shit (in the way that mischievous puppies are), and bloody adorable haha.

It’s been an absolute rollercoaster of emotions- I knew it was going to be hard raising a pup, but my gosh, does it take a lot of dedication; sleepless nights, potty training, trying to escape their piranha teeth and trying to burn off their constant stream of energy, phew!

There has been many tears and wondering ‘what the bloody hell have we taken on?’ moments. You always feel like you’re doing something wrong. There is such conflicting information out there about how to raise a puppy, that it makes you feel like you are a constant failure. So in the end, you have to just say to yourself ‘I’m trying my best’. She is happy, fed, warm and safe and that’s what counts.

She’s a little smarty pants, so training is going well and she’s extremely food driven (typical Labrador!), so that’s been a huge bonus. We start puppy classes this weekend and I’m looking forward to seeing how she gets on.

I’ve also had to remind myself that I am still quite sick and I shouldn’t beat myself up too much trying to do everything perfectly. Hence why I haven’t been writing- it was just one task too many for me at this time. Whenever she has been sleeping, I’ve taken that opportunity to relax or do my chores around the house to try and conserve my energy. I have felt a flare up coming on over the past week and I’m trying my best not to overdo it and burn out too soon.

There has of course been some lovely times though; snuggles on my lap, the excitement of taking her out for her first walk, those moments where training has finally stuck and she ‘sits’ on command, feel like such an achievement.

There is a long road ahead sculpting her into our perfect canine companion, but we are making great progress everyday.

I do apologise that I won’t be able to keep up with things on here and it may take me a while to reply to messages, but thank you for your support. I hope that you are all doing ok and I will keep you posted where I can.

I hope you all have a lovely Summer!

How about you?

Do you own any pets? Has it improved your health or is it difficult to manage with your illness? Do you have any tips to share with us on how you balance it all? If you have raised a puppy yourself, do you have any tips to share?

And of course feel free to share some pet pictures! I would love to see them.

Lots of Love & Hugs,

Amanda (and Winnie!) x

Hi all,

Sorry it’s been a while since my last post! How have you all been?

I just want to say thank you so much to those that kept checking in with me and leaving me lovely messages- it’s so comforting knowing that people are thinking of me and it really did cheer me up :)

I felt like I needed some time out, time to hunker down and properly rest without deadlines and to not put any pressure on myself to be ‘productive’, which has done me the world of good.

As you know, I started taking my biologic medications over a month ago now, which at first kicked my butt with side effects. I had nausea, hives, bloating and a lot of fatigue (which also gave me heart palpitations). I also had a couple of infections which needed antibiotics. I knew I was going to feel worse before feeling better, but I guess I was shocked at how crap I felt almost immediately after taking the medication and this of course had a knock on effect on my mood and mental health.

But my healthcare team suggested that I took some antihistamines with the injection and just wait it out. The antihistamines made me feel a lot better almost instantly which was great. Still a lot of fatigue, but the other symptoms went away yey.

Now the fatigue is slowly dissipating over time too. Before I would take the injection and be wiped out for almost the entire two weeks before the next injection, but now the major fatigue lasts around 1-2 days and then I start to come out of the fog again which is promising. Still fatigued, but at a level that I feel comfortable managing by pacing and taking it easy.

I used to shake before giving myself the injection, terrified of what new symptoms would crop up, but now it’s starting to feel like a part of my normal routine and I don’t dread them as much anymore. I make sure I have a little treat to give myself afterwards to get me through- usually Haribo sweets!

I’ve also had less pain overall. Not as much as I would have hoped but it’s still early days and there is still plenty of time for things to improve- they say give it around 3-4 months to see the full effects. It’s weird, it’s almost created different types of pain in different areas of my body but lessened in others. Like my feet have been quite sore, yet my rib pain has lessened. Not sure if that is due to the medication or just a natural change in my disease. However, I am writing it down in my symptom journal and seeing what happens over time.

I also felt that I needed a bit of a break from writing because I was getting a little fed up of hearing myself go on about how ill I felt all the time haha. Does anyone else get that? Getting fed up of hearing yourself moan about stuff, even if there is very good reason to?. There was new symptoms and side effects cropping up almost daily and I was finding it hard to keep up with it myself, let alone share what was happening with those around me. So I felt like I needed to concentrate on getting through it instead of trying to write it all down. It felt messy and complicated and trying to put all my feelings down into something that made sense was making my head hurt!

I think sometimes we need to go into an almost denial and ignoring phase about our illness for pure survival. I didn’t want to talk about it much because it was scary and the more I focused on it and spoke about it, the more upset and anxious I was making myself.

So instead I watched loads of crap TV, lost myself in my imagination via fiction books, went on lovely nature walks and days out in the campervan with my husband, visited friends and family and just tried to live my life the best I could despite the chaos that was happening inside my own body.

And it hasn’t been all doom and gloom!

I do have to celebrate the wins whilst they come up and remember where I was a year ago compared to now. A year ago I was almost always stuck in my bed with pain and fatigue, but just last week I managed a 2 hour walk on a lovely outing in a forest with my husband. The sun has finally started to shine here in England, spring is on its way and it feels amazing. Whilst the walk wasn’t totally pain free, I still managed it, which past Amanda would have been amazed at!! I woke up the next day fully expecting a full on flare up with loads of pain and fatigue, but it didn’t materialise, which is a miracle in itself.

And that’s the funny (not so funny) thing with diseases like mine- they are so variable and unpredictable. You have to learn to not hold on so tightly.

Which is really hard to do for a control freak like me. When you have been so anxious your whole life, you try to control as many variables as possible thinking that’s how you can reduce the risk of bad things happening, but sometimes in life, bad shit just happens regardless. It doesn’t mean you’re a bad person or you haven’t been trying hard enough.

When you have a good day you must celebrate, yet keep realistic expectations that tomorrow may not be the same, but not letting that fact rob you of the joy you are feeling in that moment.

When you have a bad day you have to learn to hunker down and ride it out the best you can, but still have hope that tomorrow could be different. It might not, but it might.

The point is to just keeping moving forwards.

I was getting so fed up with just waiting for things to get magically better before I started living again. I have to be realistic that I may never have a life without pain or fatigue, but I need to continue living my life. There is more to life than just feeling ill.

So I’ve also tried to look ahead to plan my future, which again is really hard to do with such an unreliable body, but I’m trying, as it gives me forward momentum and something to aim for instead of all this dreaded waiting and waiting….

For the first time in two years I’ve been thinking to myself, what does my future look like? What am I going to be doing with the rest of my life? If I am going to always be in some sort of flux, bouncing from different degrees of pain and fatigue- what can I still do, despite all of that?

I have a few things on the horizon that I’m looking forward to sharing with you in the next few weeks…

But until then, I will still be posting but maybe not weekly- it depends how I’m feeling and I don’t want to push it too soon.

In the next week or two I hope to post about my experience of taking biologic medications- how I prepared, how I coped with the side effects, and what I wish I did differently etc- which will hopefully help some of you out there who are about to start them.

Thanks for sticking with me!

Lots of Love and hugs,

Amanda x

As you know, I started my new biologic injections a few weeks back. I’m not going to lie, it’s been hard.

The fatigue has come back with a vengeance and I keep getting new, weird symptoms and side effects. I’ve reached out for support from my healthcare team, but get a mix of dismissal, vague answers, very little reassurance, and painfully slow responses in return.

I was prepared for the fatigue, and I knew the medication wouldn't work straight away, yet the sting of disappointment still hurts. It hangs heavy in my chest.

You secretly hope that you will be the exception. However silly and naive that sounds.

You’ve had to make your life so small due to the illness, that each new disappointment feels claustrophobic and suffocating.

This grief feels like a homesickness, a longing, but you don’t know where you need to go to soothe it. A place that no longer exists, a body you can’t call your home anymore.

How much time are you expected to waste waiting in this suspended fog?

You wish that once, just once, something could be easy…

It’s the strangest feeling injecting a new medicine into you and knowing it has such wildly different results in each individual- you sit there paranoid, waiting for the first sign that it’s entered your blood stream- dizziness, a slight itch around the injection site, a redness, spreading redness, a wave of nausea, a pain here, a pain there- you don’t know at this point what you are just imagining, what is anxiety, or if it truly is the medication, or perhaps just another symptom of your disease.

This medication feels like a miracle and a poison all in one.

Once its in you, you just have to lay back and hope that it’s going to get rid of the thing that has been ruining your life.

You feel utterly vulnerable- thinking it’s in me now- there is no turning back.

You just have to sit back, wrap yourself in a blanket and pray that everything is going to be ok, or at least not get any worse.

The horrible realisation washes over you, that you have very little control over your life or your body. Maybe you've never had it.

Anxiety and depression start to come back and the constant fight to push them away takes the last ounce of strength you have in your body.

I’ve had to retreat back to my bed again for most of the week. I have flashes of unhelpful thoughts like Returning to my bed feels like a failure.

It took me two long painful years to gather the strength and knowledge to get myself out of this bed on a more regular basis. Building up strength so slowly over time that you don’t realise what a mighty achievement you have made until it’s taken away again. The weight of that retreat feels so heavy.

You feel like a hapless spectator; life moves on with or without you. Back to being ghostlike again. Wondering if this is what purgatory feels like?

I don’t even want to make plans further than the same day, because it feels too disappointing to have to cancel them.

I'm feeling like this tree- hanging on by thin roots, resting on a cliff edge. The soil around it eroded, raw and exposed. Relying on the protection of the sturdier trees around it, sheltering it from strong winds.

One more weird symptom, one more dismissal or disappointment, one more cancelled plan, one more day spent in bed in isolation, begging for scraps of joy and the bough may break.

Yet despite all these problems, I keep looking back at that picture of the tree and I find a glimmer of hope.

At first, I focused heavily on it’s bare roots, the eroded soil, the precarious angle of its tree trunk. I concluded that the tree was doomed.

Yet….I forgot to look up.

Look at the canopy.

Despite all that it has going against it- it’s still sprouting new foliage. In fact, it looks fresh, green, vibrant, strong.

I’m always surprised by nature; plants, animals, life itself- it’s determination to survive, to keep going, even when it looks like everything is against it.

Sometimes it just takes looking at something through a different lens to notice that there is beauty hidden there. You just have to look for it.

There is beauty in survival.

And that’s exactly what I’ve been trying to do these last few weeks.

Look for the beauty.

It’s taking all the energy I have left to look for it, but what else can you do?

I’ve reminded myself that the last two years of gathering knowledge and strength have not been in vain, despite having to retreat back to bed.

Things are different this time around;

I know now that things are only temporary and things can change

I know that I am strong enough to get through this next hurdle because I’ve had to countless times before, the only way is through

I have a network of people around me that understand and want to support me

Retreating back to bed doesn’t mean failure, it’s just giving me time to gather my strength back

I’ve had to just surrender myself to the process; rest, take shelter from the storm, rely on those around me, accepting their support, letting go of ‘control’, releasing emotions, being honest with myself and those around me, trusting that everything will be ok, focus on the beauty that surrounds me.

I allowed myself a day or two of mourning; of feeling scared, sad that I’m always missing out, of feeling anxious, crying, being angry over yet more cancelled plans, staring at the blank walls of my bedroom in utter desperation.

I learnt that this time to mourn is equally as important. To let the grief run through you. Otherwise it gets stuck. It takes more energy to hold it all in.

I thought giving into these thoughts would break me, but surrendering myself to them is part of the healing process.

But I’ve also learnt that you can’t stop there forever. You can’t continually stare at that tree and be worried that it may topple.

You also have to look up. Actively search for the beauty, the joys, the tiny miracles to keep you going. Grab life while you can.

Remind yourself why you’re fighting so hard to stay alive in the first place.

What is keeping you going? Who do you want to fight for? What makes being a human on this planet so precious and something to celebrate despite all the pain?

So i’ve started to make a list of joys. No matter how small or inconsequential they may seem to others, if it’s made me feel even a tiny jolt of joy, it’s going on that list. I'm clinging onto these for dear life, like those tree roots in the soil. If I don't, I will not be able to stop myself from falling.

Here are some things I have on my joy list so far:

• The way my husband kisses me on the forehead every morning before he goes to work. Each day, without fail, making me feel safe.

• My books! Not sure what I would do if I couldn’t get lost in my imagination.

• Hot chocolate, with cream and mini marshmallows in my favourite mug

• My Auntie sending me photos reminding me that someone is thinking of me- the murmuration of starlings, my nephew baking cookies, Willow the black lab sniffing in the grass. It all helps.

  

• The kind smile of my delivery driver dropping off my meds. The look of genuine empathy in his eyes when he says ‘please take care, I hope you have a good day ok?’.

• When my kindle sleeve arrives- the creator had put a cute note in it and included a free keyring. The attention to detail and knowing someone has hand made it and packaged it with such care fills me with gratitude. Look at the little strawberries and bunnies 🥺

• Looking through all the lovely comments on my blog!

• I finally finished a short story that I have been working on and I’m really happy with it.

• My brother sending me cute pictures of his cheeky cat Louis; look at that fluffy belly and soft squishy toe beans.

  

• The way my husband texts me at lunchtime to see how I’m getting on. It's nice to know someone is thinking of you.

• Managing to go out for short slow walks on the weekends- seeing blue skies, frosty tipped reeds, watching kites and buzzards soar, and hearing, for the first time, a great spotted woodpecker; it's pecking into the bark sounding like a creaky tree in the wind.

  

• Snuggling up on the sofa, duvet wrapped around me, fresh PJ’s on, watching re-runs of my favourite shows.

• One of my local bookshops has started a surprise book subscription service. My first book came through the post, all beautifully wrapped 🎁

  

  ---

How about you?

How did you feel when you first started a new medication? How did you cope with the side effects? How do you get through a setback? What has been on your list of joys recently? What keeps you going through all the hurt and disappointments?

Leave a comment

I’m taking the next week, maybe two weeks off- depending how my energy levels go. I feel I just need some time to hunker down in survival mode and just totally rest. Apologies if I take a little time to reply to comments. I do appreciate every single one that I get.

Sending you all healing thoughts.

Lots of Love & Hugs,

Amanda x

Most people will read that title and roll their eyes and instinctively say ‘Ha that’s not true. Without money, we have nothing!’ But I bet if you are ill or disabled (especially with chronic fatigue), you will read that sentence and sigh a knowing sigh and nod your head yes.

Yes, of course, money is important. I am not arguing that fact. Money gives you choices. It gives us access to things like shelter, food and resources etc. But I wish society didn’t act like money is the one and only god we all need to worship.

Society promises you that if you worship this money god, that everything will be ok. More than ok. It promises you god worthy status in return. That if you save enough then nothing can touch you!

But that is simply not true.

Energy and our health are the most precious resources and we need to protect them at all costs.

Even when I researched energy versus money on google- it only came up with things related to work, and if you have more energy, you can work more and earn more money!

It never once mentioned energy in it’s purest form- we need energy to think, make basic decisions, talk and communicate, socialise, create, move, feed ourselves, get out of bed, wash, look after others, work, earn money, raise the next generation, experience all that life has to offer.

Lets look at our physical energy in terms of money…

I’m starting to explain energy in the form of currency to those around me, because it’s literally the only way people can start to understand the concept of chronic fatigue. People can imagine being poor, but not imagine a life without energy.

So lets start using energy in terms of money:

Most people around me have £100 a day

They have the following tasks that need to get done each day, and each task costs money:

Get out bed £5

Wash yourself/have a shower £10

Get dressed £5

Make and eat breakfast £5

Get the kids ready for school or look after other dependents (£15)

Travel to work £10

Work 8+ hours a day £30

Talk to people during the day £10

Pick up kids from school/help them with their homework £10

Make dinner £10

Eat dinner £5 (yes, even chewing and swallowing takes energy)

Washing the dishes £10

Get ready for bed/put kids to bed £15

Watch telly/spend time with family £5

Hmm we’re already in debt…

And that’s just the very basics. A lot of days, we have waaay more tasks to complete. E.g. go to the gym, study, side hustles, cleaning, food shop, laundry, DIY projects, socialise, deal with emergencies, pay bills, help out friends and family, work overtime, do hobbies, deal with illness or injuries etc.

But don’t worry, the pot magically refills over night after a good nights sleep and a cup of coffee right?…

What if your magic money pot has malfunctioned?

What if you only start with £10 a day, because your magic money pot is broken. What activities would you choose?

You need to choose the activities that keep you alive right? Eating and drinking. Talking to those around you. Paying bills and your mortgage otherwise you become homeless.

But that all costs more than £10 a day I hear you say! So you start to borrow from the next day’s money fund.

I’ll just take out £5 from tomorrow so I can eat, drink, AND go for a shower today.

But then tomorrow comes around. Oh crap, I only have £5 and I still need to do everything I did yesterday to stay alive, but with less funds. What do I do?

But with you, you are not even guaranteed £10 a day, it may be more, it may be less- your magic money pot is really malfunctioning. Even the price of each activity changes from day to day. Today washing your hair costs £5 but tomorrow it could cost £20- how do you plan for that?

You have no way of knowing until that day how much money you will have. So things start to get really confusing and spiral out of control pretty quickly.

Other people around you don’t believe you when you tell them you only have £5 to live on each day. ‘Nah that can’t be true’. Even the people that claim to fix the money pots don't believe you. Sometimes others even ask you to pay for their days too!

Before you know it, you’re in huge amounts of debt, you still need to get all the tasks done in the day to keep yourself alive…what do you do?

With money- when you go into debt, people have the option to beg, borrow or steal. They can work extra hours, get another job, borrow from friends and family, get a side hustle, sell stuff, get loans, get another credit card, file for bankruptcy, re-mortgage their homes- none of these are ideal of course, but they are still options, they give you time to think of a long-term solution…

But with energy, you can’t do any of that. When energy is gone, it’s gone. Sometimes without warning.

Without energy you can’t think, communicate, do the basic tasks to keep yourself alive. You don’t even have the energy to think of a solution or a way out!

The pot doesn’t get filled back up.

So what do you do?

Sorry, I know I'm starting to sound like Keanu Reeves from Speed, but really, what do you do?

I don’t say this to scare anyone. I’ve know from first-hand experience from being a nurse, that when you start throwing out scary truths at people, hoping that they will change their way of life to improve their health, they usually do the complete opposite.

A series of events usually take place, they either:

- Bury their head in the sand and pretend it’s not happening

- Lie to me and tell me what I want to hear ‘Yes ok I’ll do that’, then carry on as normal

- Get angry at me and tell me I’m wrong

- And this one is the most common, they tell me flat out ‘That won’t happen to me’

And they say that, not in the way of ‘I’m going to listen to your advice and do everything in my power to change my behaviour to lessen the chance of that happening to me’, they just genuinely believe that it won’t happen to them and carry on exactly how they were. Like they have a magical force field around them. That if they just believe it wont happen, then it won’t. Psychologists even have a name for it, it’s called optimism bias.

I do think that a lot of society look at the ill and disabled and genuinely think ‘that would never happen to me’.

And I don’t think it’s malicious in a lot of cases, I think it comes from a place of deep fear.

And what happens when our fear centres are triggered in our brain? We go into fight, flight or freeze mode (we get angry, ignore, flat out refuse the truth, run away from our problems).

They don’t want to believe that it could happen to them because yes it’s really scary.

None of us would willingly choose this life.

But I hear silly comments all the time that tell me people still don’t believe it could happen to them one day, comments like:

‘Oh I could never do what you’re doing, you’re so brave’

‘Well done for choosing to rest and taking time out’

‘I could never not provide for my family’

‘I could never take a few days off, let alone 2 years! Too many people depend on me’

And I laugh, because they say it like I have a choice in the matter. Like I’m sick because I’m choosing it, or it’s because of some moral weakness or character flaw I have. That I’m just not trying hard enough. That if I just applied myself a little harder, thought a little more positivity, pushed through, ate more kale, that I could get myself out of this sticky situation.

They actually can’t fathom the fact that I can’t work, because I literally don’t have the energy to. I literally can’t push through this level of fatigue. That is not even an option. My muscles and cells literally cannot produce the energy to move to the same extent as the average person.

If I push myself, things start to go very very wrong in my body. That energy is taken from other places i.e vital organs- leading them to shut down and to not work properly. If I push through, that is not only robbing energy from my tomorrow, that’s robbing me of my life, my future.

If I had listened to what everyone else told me to do up until this point, which was to carry on as ‘normal’, I probably would have been dead.

And that’s a concept that is really hard for people to get their head around.

They can’t imagine that ever happening to them.

And I get it- I didn’t either.

I kept going on in the same way as everyone else; being chronically busy, pushing through, working beyond my means, spending beyond my means, reaching for the misguided goals in life, ignoring the warning signs. I didn’t even think of my energy as a resource I had to protect. I let people steal my precious energy all the time, handing it out like candy at Halloween.

But I can assure you, that if you keep ignoring your body and your boundaries; your body will force you to listen. Maybe sooner than you think.

We can’t always protect ourselves from getting ill…

But even then, we can do everything to try and help ourselves; eat healthy, work out, take supplements, get regular check ups etc and that still won’t guarantee health and energy.

Because you know, things like: genetics, environmental factors, sods law, bad luck, accidents, weird viruses that come out of nowhere…these can all still happen to anybody no matter how strong your will power or mind is!

And again, I don’t say that to scare people.

I say it so people will prepare, but to also change their attitude towards the ill and the disabled.

I wish society would just accept that people get ill. It’s just a fact of life. It doesn’t mean those people are weak, lazy or lacked the capacity to make the right choices. Sometimes people just get sick.

Instead of blaming people for being ill, not providing help and support, gaslighting them- society could put all that effort into actually just preparing for it.

If society was set up to help the ill and disabled- making things more accessible, less stressful, more inclusive, less shame, more empathy- it would not only benefit them, but it would benefit everyone!

But instead society likes to bury it’s head in the sand, point fingers and get angry at the sick.

Even when you are ill and have nothing left to give, society still expects you to show up in life and spend that precious energy currency, like it’s just a choice.

Even the departments of the government that are made to help the sick, call us lazy and unproductive. They call us ‘written off’ like were some car part or machine, trying to push us back into the workforce. When most days those people they shame can’t even lift a fork up to their face to feed themselves.

Even the institutions like hospitals and doctors that are there to help the ill, constantly gaslight us and tell us were lying or its all in our heads.

Sometimes even our own family and friends can ignore our pleas for help, keep pushing our boundaries, ignoring the truth and keep asking us to spend precious currency we just don’t have.

We even do it to ourselves out of warped guilt, low self-esteem or out of pure desperation to survive.

It shouldn’t have to be like this.

No problem ever gets solved by ignoring it.

So I guess what I’m trying to say is…

How do you want to spend your most precious currency today?

Is your current life sustainable-what if tomorrow you suddenly lost your health and precious energy- what would you do?

Do you have a community around you that you can trust and rely on to help you in times of need? I assure you, you cannot do life by yourself.

What GIVES you energy? Hold onto these for dear life because they are precious. Even if society tells you that they are a waste of time- if it uplifts you, then hold onto it.

Honestly ask yourself what your attitudes are like towards the sick and disabled. Have you got some work to do to shift your mindset to be more compassionate and empathetic? Including attitudes towards yourself.

These are all questions that I truly wish I asked myself on a more regular basis before I got so ill. Because when I got ill, it was already too late. I had to suddenly rely on those around me. I did not expect that to happen in my 30’s. I thought I had more time.

Society tells us we need more and more, yet I’ve found that the more simple my life, the easier it is to manage. My life has actually become richer in recent years.

Now I use my precious energy to create a loving community around me- saying goodbye or distancing myself from the people that don’t believe me when I tell them ‘I am sick’, and who don’t trust me when I tell them ‘I can’t do that’. Instead I’m creating a beautiful life with my husband, my close family and a tight-knit group of friends who have always had my back.

I concentrate my energy on healthy behaviours that give me the best helping hand; sleep, good food, rest, gentle exercise (if possible).

I try to refrain from the chaos of social media, the news and other things I can’t control and that drain me.

I try not to waste energy on guilt, anger and blame if the above doesn’t always work out.

I lean into the things that give me energy; being creative, reading, spending time with my husband, being out in nature.

I have accepted that I need to say goodbye to my career in healthcare, it just doesn’t allow me to live a healthy life in the body I have right now. I can't give to others for them to thrive, whilst I'm struggling to do basic things for myself. I have to think of alternative ways I can contribute, in a more sustainable way, when I am able.

Society can shame me all it wants, but it doesn't change the truth.

All these changes take time, so that’s why we should all start putting things in place now, before it’s too late, before the choice is made for us.

Keep consciously asking yourself ‘How do I want to spend my precious energy today?’

How about you?

Since becoming ill- what have you learnt about the true nature of what is important in life? What do you spend your precious energy on now? What do you wish people and society would focus on instead? Or do you disagree with me, do you think money is the most important thing? Am I being over simplistic? If you are not ill yourself- can you ever imagine a time without your health and energy? Is your life sustainable as it is? Are there changes you would like to make and if so what? I would love to know in the comments.

Leave a comment

Sending you all healing thoughts. See you next week!

Lots of Love & Hugs,

Amanda x

On the 30th of January, it will be one whole year since I was diagnosed with ankylosing spondylitis (AS). (I’ve attached an article below which explains what AS is)…

Of course, I am not happy that I got diagnosed with this illness; it has brought a complete upheaval to my life. I’ve lost my job, and my career plans have gone out the window. I have lost friendships. Pain, isolation, and anxiety have been steady companions on this illness journey of mine.

Yet, I also celebrate that diagnosis because, along with it, came radical acceptance—something I had not felt for a very long time.

I had been living with this illness, unbeknownst to me, for many years, possibly for over a decade. I had multiple health issues and fluctuations in my energy and mental health during this time, with very little explanation for them. With this came great distress.

Because I didn’t know what was causing these problems, I didn’t know how to help myself. I couldn’t move on. I was stuck in a toxic limbo land. I either had to completely succumb to these issues or try to work through them the best I could.

At first, I tried the latter, plugging on trying to be ‘normal’ during the day, putting on a brave face to the world, yet in the evenings behind closed doors I would collapse in a near state of exhaustion and overwhelming depression. Survival mode kicks in, and at first, you don’t accept that you can’t continue in this state. You claw your way through each day. You adjust to the new normal. You start to believe that you are just weaker than everyone else. You accept that you are broken in some way and that you are a failure.

I felt incredibly isolated because I had no way of communicating what was wrong to those around me, so I kept it hidden most of the time. The feelings of shame and guilt start to burrow their way into your bones, becoming the deepest part of you.

Of course, I tried to seek help via doctors. Sometimes they would throw me a lifeline; a test here, a blood test there to appease me. Throwing me a rope of possibility with an explanation; hormones, you say? It’s just anxiety; yes, you mentioned that before. But none of those explanations quite fit. It didn’t explain all the symptoms. The usual treatments such as birth control and anti-depressants didn’t work, not for my pain at least.

Without proper explanation comes doubt. I doubted myself countless times; was I really sick? Was it all in my head? Was I physically disadvantaged in some way, or was I just less mentally strong and capable compared to most people?

There were times I was adamant that something was wrong, and I went to the doctors armed and ready to fight my case. But there were also many other countless times when I just accepted my fate. It was me, it was my fault that I am like this.

I look back, and it really saddens me to think of the person who used to think that about herself. She had so little self-esteem. She really did think that she didn’t deserve a rich, healthy, and meaningful life without pain and confusion. She hated herself. She was disgusted at how weak and pathetic she felt.

I wish I could go back to that version and just wrap my arms around her. I would tell her that everything will be okay.

In March 2023, I couldn’t pretend that I was okay anymore. My body quite literally gave up on me. I had no more energy left in me. Forcing myself out of bed to work was so difficult; I was in tears most mornings. I was so tired; both mentally and physically. My depression and anxiety were at an all-time high that I barely left my house other than for work. My back was riddled with pain, so much so that I was limping around wincing at every step that I took. My fingers were stiff, and I couldn’t unfurl them from a tight grip that they had contorted themselves into overnight. I couldn’t focus on my job. I didn’t want to socialise; I just couldn’t bear having to fake a smile anymore. I was becoming bitter, angry, and didn’t enjoy much of anything. Life became very bleak and monotone.

One morning, I looked down at my hands, and I just kept repeating to myself, ‘This is not normal’. I was saying it more to try and convince myself at this point. I honestly didn’t know anymore what was normal for a 30 something-year-old woman to feel inside her own body. Perhaps we all felt this way, but others were better at hiding it?

But something deep inside me told me to seek help. I guess it was a survival instinct that refused to give in. So I went to the GP that day. For one last try.

She was a new GP, someone I hadn’t come across before. To my surprise, she believed every word I said. She never doubted me or questioned me. She said she was sorry that I felt so poorly, and she immediately sent away a referral to the rheumatology department at my local hospital.

‘It sounds like this is some type of inflammatory arthritis,’ she told me with a refreshing sense of honesty.

A spark of hope ignited within me that day.

One year later, after countless tests and appointments, I got the diagnosis of ankylosing spondylitis.

That diagnosis gave me my life back. Which sounds strange, I know.

That diagnosis was confirmation that I was not insane. I’m not kidding. I was at the point where I was really starting to question my own sanity and my own reality. I did not trust myself and the world around me anymore. How could I? It was like the world was telling you that everything was white when you saw black.

Your gut tells you something is desperately wrong, but everything and everyone around you tells you the opposite.

And when that starts to happen, when that level of unravelling starts to happen within your own mind, it’s very hard to stop it. It’s a very scary place to be, and I never want to go back to that dark place.

I never felt safe. My nervous system was on constant high alert, and the painfully ironic thing was that I knew all that stress was further contributing to my unravelling and ill health, but what could I do?

I got my diagnosis over the telephone, and when I hung up from that phone call, I literally cried tears of pure relief. They clarified what the illness was, and each one of my symptoms could be explained.

I sobbed for what felt like an eternity that day, and I kept repeating to myself,

‘I knew it. I knew it’.

When the wave of relief passed, of course, came sadness and grief. I suddenly had to admit to myself that I needed help. I needed to change my whole way of living. I couldn’t continue on the path that I was on.

Again, that is a scary place to be, but at least there was now a way forward.

That diagnosis gave me the permission I needed. Not permission from other people, but from myself. Permission to give myself the much-needed care that I deserved.

And that was the first step.

It took me many months of self-reflection and therapy to convince myself that I deserved care.

It’s taken me this whole year to really believe that I deserve to rest and recover without guilt. It’s taken months of therapy to unravel all that hurt and confusion.

Only then could I really take on the mammoth task of actually starting to properly heal. And I don’t mean heal as in a cure—sadly, there isn’t a cure for this illness—but to heal in the sense of living the fullest life I can in the body that I have been given.

And that’s why a diagnosis can be so incredibly powerful. It not only gives us access to more support, medications, and understanding, but it can also give us back acceptance of ourselves. Permission to care for ourselves. A path back to trusting our own instincts again.

I may not have my life sorted out yet, nowhere near. But this past year, since diagnosis, has given me so much.

I now trust in myself again. I’ve allowed myself to lean into creativity and writing because that is what my gut is telling me to do. I’m learning to trust my body and let it rest when it’s telling me to. I now have the confidence to venture outside and connect with others again.

It also feels quite poetic that nearly a year on from the diagnosis, I’ve started to take my biologic medication for the first time. So far, I haven’t had many side effects. I’m learning to trust the process and to see what happens. If it works, great. If it doesn’t, then I will cross that bridge when it comes to it.

So on the 30th of January, the anniversary of my diagnosis, I am going to buy myself a cake, I will put a candle in it, and when I blow it out, I am going to wish for myself all the things that I never dared to before the diagnosis; a better life for myself.

And you do too- don’t give up hope!

How about you?

How did you feel when you got a diagnosis of your illness? Are you still on that painful journey to finding a proper diagnosis- how is this impacting you both mentally and physically? What would a diagnosis mean to you? Has getting a diagnosis helped you get support, or did you not get what you had expected/hoped for? What was that first year like after diagnosis- how does it compare to now? Any advice for people still looking for a diagnosis, or for anyone who has just been given one?

I would love to know in the comments below.

Leave a comment

Sending healing thoughts to you all. See you next week!

Lots of Love & Hugs,

Amanda x

P. S I also want to say a big thank you to everyone who offered advice and well wishes last week when I was starting my new medications. I was so nervous, but all your lovely comments really helped to get me through.

It was nowhere near as scary as I had built up in my head, it never is right? I will do another blog about it in a couple weeks time, after my second injection, to let you know how it’s all coming along so far :)

I've been given the go-ahead to start my biologic medications. For those who may not know, biologic medications help reduce inflammation in the body. In my case, inflammation is caused by an autoimmune disease called Ankylosing Spondylitis, which primarily affects the spine and pelvis (among other areas), leading to pain, stiffness, and fusion of bones.

Biologic medications work by targeting specific areas of the immune system to make them less overactive. However, this dampening effect can make you less able to fight off germs, thereby increasing the risk of infections.

(You can read more about the different types of medications used to treat Ankylosing Spondylitis in my medications article linked below).

What happens next?

The way it works (at least here in my region of the UK) is that you get the medication sent to your home via a company called Healthnet Homecare. You then schedule an appointment for a nurse to come to your home when you want to start the first injection. They show you how to use it, explain the medication and its possible side effects, and watch for any adverse reactions that may occur.

After that, you are free to continue taking the medication by yourself. For me, that means an injection every two weeks. You also have regular blood tests that you either arrange with your rheumatology team at the hospital or your local GP practice. These tests monitor things like your inflammation levels, how well the medication may be working for you, and any possible side effects.

I then have regular telephone appointments scheduled with my rheumatology nurse to check how things are going.

My GP has also been updated and is aware that I will be starting this medication shortly. They have notified me that they have a special note on my records, which alerts all doctors and staff of my medication and immunocompromised status. This means if I call for an appointment regarding a possible infection, I essentially go to the top of the list as antibiotics may need to be administered quickly.

Now, all of this seems very well thought out and organised. I’ve been aware of this day coming for almost two years now, and I’ve had the medication waiting in my fridge, ready to go, for the past year while I waited for other appointments and tests my rheumatology team wanted before I could begin.

I’ve read countless research articles and anecdotes from others who are taking them. I’ve read what can happen if you don’t take them (essentially all the symptoms of AS continue to cause inflammation and possible damage to your body…).

So why is it, now that I’ve come to the point of being able to take the medication and book that initial appointment, I feel hesitant to start?

So why am I still procrastinating?

My first concern is…

There’s a part of me that says ‘Is it a good idea to start a medication that can compromise my immune system during, what seems to be, a quadruple threat of viruses going around at the moment (norovirus, covid, another respiratory virus and also flu). My local hospital is issuing red alerts saying that their A&E departments are on the brink of collapse….my local GP office is sending out warnings on their Facebook page to only call if absolutely necessary….and there are more and more delays in people being seen and getting their medications.

Second concern…

There is also a part of me that is terrified to start the new medication because one of the side effects (for some people) can be increased fatigue.

I’ve worked so hard over this past year to get my energy levels up. They are nowhere near what would be considered ‘normal’ for someone my age, but I can see the huge steps forward I have made in recent months. I’ve changed my diet, gone to therapy, moved my body more, and exercised sustainably. I’ve set boundaries and prioritised rest and recovery. Now, I have the energy to write, be creative, and be more social.

I’m worried that taking this medication might mean I actually take a few (giant) steps back. What if I go back to those days of being so fatigued that sitting up in bed made me breathless? Or back to the days I was so fatigued I got out of breath eating soup and couldn’t chew solid food? I worry that I’m not mentally strong enough to deal with such a setback. I’ve finally found a routine that I’m happy with. Am I rocking the boat needlessly by starting this medication right now?

Third concern…

Another side effect is being immunocompromised and at increased risk of infections. This will mean putting even stricter boundaries in place to protect myself. It’s been hard enough to protect my own energy levels, so what if asking the people around me to help protect my immune system becomes too much for some? It might mean seeing friends and family less, especially around winter when flu season is rampant, to keep myself safe. It may require having uncomfortable conversations and asking them to wear a mask or washing their hands before coming into my house. Will that make me even more isolated than I am now? It feels like a constant test of people's love—their willingness to put measures in place to see me. With time pressures, distance, and the stresses of modern life already getting in the way, will this be one step too far? Do I have the strength to maintain my boundaries and sometimes say 'No'?

Yes there is a fourth, sorry…

Will the doctors even listen to my concerns about possible infections or side effects that may occur? I’ve been gaslit many times in the past, my concerns dismissed and overlooked for years. Why would now be any different? What if they don’t listen to me again? Am I strong enough to keep fighting to be heard?

Fifth and final concern (I promise)…

But then there is also another voice that’s calling out to me. It says, "Amanda, what if you take the medication and you feel tons better? You have read countless stories of people who have taken the medication and feel amazing! What if your pain reduces, your stiffness lessens, and you get more energy? What then!?"

And you want to know the really weird thing? That outcome actually scares me the most. For two reasons…

Firstly, I’m scared of it going so well that I get used to feeling amazing, but then one day the medication may stop being so effective (this happens quite often with biologics and people need to change medications multiple times). It would be like dangling the carrot and then it being whipped away again. Am I strong enough for that outcome? Treading on eggshells, rebuilding my life, for it to then be taken away again…

But the second reason, and the one that scares me the most, is, “What if this medication works and makes me feel a lot better and then my life can go back to normal?”

That word "normal" starts throbbing in my mind in neon red letters… My nervous system sees this word as a threat, and I start to feel panicky.

What is normal?

What was my life like before my ankylosing spondylitis diagnosis? Do I really want to go backwards?

Do I want to return to a career in nursing and healthcare, which was so full of stress, burnout, and bullying? Where I had no boundaries, was a people pleaser putting everyone else’s needs above my own, working overtime with a high workload to low pay ratio, depressed, anxious, with no desire or will in my body to create or do any hobbies other than sleep, eat, and repeat.

I was pushing myself to the brink of complete burnout and collapse, to the point where my faulty genes got turned on and an autoimmune disease was triggered. My body had to scream in pain for me to listen to it and to finally slow down.

Is that really the ‘normal’ life I want to go back to?

These last few years have been hard, but being ill has woken me up to the fact that the life I was living before was far from being normal.

I don’t want to go back to that old way of life, the one so glorified in today's modern society. The one of toxic busyness and stress, worn as a disturbing badge of honour.

“No, I’m more tired than you. NO, I AM,” we shout at each other, because that shows how important and needed we are!

Society shouts, “We have to put career, status, and money above all else to show our social rank! Look at me, I work 50+ hours a week. I earn £++++, that means I’m winning at life!!”

But does it? Does it really, if it means sacrificing our mental and physical health in the process?

Before I started to get sick, I got my first-class degree at university, worked as a nurse, had a nice car, and a nice flat, and could buy nice ‘stuff.’ On the outside, I looked like a success! My family was proud of me; I was living the dream. My dad couldn’t wait to tell everyone how proud he was that his daughter had become a nurse.

But on the inside, I was miserable. I didn’t feel successful at life, even though I did everything that society told me to do. I didn’t even go to my own graduation. I felt like a fraud. I was depressed and anxious, and felt on the verge of panic attacks every night. I threw up by the side of the road on my way to work most mornings, terrified of the stress that lay ahead as a community nurse. My boss would guilt trip me down the phone, “But you have capacity,” he would say, adding more patients to my already overflowing list. Even when I told them it wasn’t safe to see that many patients in one day, “I can’t give the quality of care that I want, that I need to,” I pleaded, to no avail.

All that time, my body was screaming at me, “I don’t have the fucking capacity. This is all too much.”

My IBS was out of control, and I would go to the toilet 10+ times before even stepping out the door. I was pale and losing weight rapidly, my blood tests showed I had multiple nutrition deficiencies, but people kept telling me, “Oh, you look so good in your uniform,” “How do you stay so slim?”

It’s called the stress diet Karen… haven’t you tried it??

I tried to reach out for help. I knew I was drowning, so I went to the GPs for help with my anxiety, and they said, “What do you want me to do about it?”.

It took so much courage to admit I was struggling that day, and they threw it back in my face. I cried; they stared coldly at me, gave me pills, and I was on my way again, back to the chaos of modern life. It was as if they were saying ‘I’m fucking miserable too, that's just part of the job, part of life, part of what it means to live in modern society’, like it was all so NORMAL.

After my diagnosis, I swore to myself that I would never go back to that old way of life.

I now know I deserve more than that. I deserve a chance to be happy and healthy, not just living at full stress capacity, white-knuckling it while life zooms by in a mad anxiety-induced rush.

But I’m worried that taking this medication will make others think all is well, when I still have a lot to deal with. I worry that external pressures and society’s weird cultural norms will rise again. Questions will appear out of nowhere like a sniper, questions like…

“When are you going back to work?” “Now you’re feeling better, can you do XYZ for me?” “Shouldn’t you be able to do XYZ? You’re all better now, right? Because you’re on the medication?” Bang Bang Bang in rapid fire.

Will I be strong enough to keep those boundaries I have fought so hard for in recent months? Will I be strong enough to resist guilt trips and my own inner critic telling me I need to be more productive to be worthy of everyone else’s definition of success? Be busier, be more stressed, JUST BE MORE!! Will I rush back into a ‘productive’ life before I’m ready and take a million steps back again?

I hope I’ll be strong enough to resist.

Whoa, put on the breaks there Amanda, you’re spiralling!

In recent weeks, I could feel my anxiety starting to gear up again. I felt the old familiar patterns of my monkey mind starting to spiral out of control: my chest tightening, heart palpitations thumping away, thought after worried thought whizzing in quick succession. What if this, what if that…

My whoop watch (which monitors my energy levels via HRV, Heart/respiratory rate, sleep etc) was already warning me with red alerts, that I was due for a crash in my health any day now.

So that’s when I had to tell myself, "Whoa, put on the brakes, Amanda. Take a breath. Slow down."

I then reminded myself of the many lessons I have learned over the past two-plus years.

I told myself the following things, which have gotten me through some very tough times:

• Take each day as it comes. Just put one foot in front of the other…

• Listen to your body; it holds a lot of wisdom…

• Who cares what everyone else is doing? What’s best for you right now?

• Stay true to your boundaries…

• Take things slow, rest when needed, without guilt…

• You don’t have to have everything figured out right away…

• Ask for help when needed; there is no shame in it…

• Stand up for what you feel is right…

• The people that really care will understand…

• You always have the choice to say no or to change your mind…

• And the most important one of all…

  You are stronger than you think! You can get through this.

And just like that, when you need a sign from the universe, during writing this article, I had a call back from the Healthnet Homecare team to arrange my appointment.

So, I have decided to start my medication this Tuesday! I’ve decided it’s at least worth a try for a better life. Wish me luck!

So you see, taking a new medication for an illness may seem straightforward enough. You take it and feel better, right? But it’s just not that simple.

As you can see from the above, there are a million questions and genuine fears that can arise, and many patients don’t have the support in place for these questions to be answered fully. Many aren’t reassured; they are just told “take this” while they are ushering in the next patient.

A lot of the time, we know it needs to be done, we know we need to take a certain medication, but it doesn’t stop it from being scary. It doesn’t stop it from having quite harsh side effects on our bodies. While these may be less severe than the symptoms of the disease at times, they still warrant concern and shouldn’t be dismissed.

People should not be made to feel ashamed for taking medications. It’s not a weakness, it’s not giving up or failing at life if we need a helping hand with medications.

But people should not be shamed for deciding not to take them either. It doesn’t mean they don’t want to get better, or they deserve ‘what’s coming for them,’ or they are being difficult or non-compliant.

We each have our different reasonings. We each have a personal choice to make. We don’t need constant judgment or unsolicited advice.

If you want to offer anything, offer your kindness, understanding, and empathy.

Or a simple ‘I’ll be right here with you, whenever you decide to start…'‘.

How about you?

Those of you on biologic medication- do you have any tips for a newbie? Do you have many side effects and how do you try and reduce these? Do you inject into your belly or your thigh and why? Have people shamed you in the past for taking medication? or for not taking it? Has the medication improved your quality of life or reduced the progression of your disease? Was it scary that first time that you took it? Or perhaps you are about to start a new medication too- how are you feeling about that? What kind of factors have you had to weigh up in your mind? How do you protect your immune system?

I would love to know in the comments below!

Leave a comment

See you next week!

Lots of Love,

Amanda x

I’ve never had a good relationship with exercise.

I’ve also never been one of those sporty girls. You know the ones you always see on tampon adverts throwing Frisbees on the beach, or playing volleyball with perfect skin and bouncy…. ponytails.

I on the other hand was always the awkward introverted girl that sat on the side lines in gym class, always on the bench because…

1) the popular sporty girls didn’t pick me

2) because I made it very clear with my disgruntled face and closed off body language, that I didn’t want to be picked anyway thank you very much.

I hated everything about sports. Being out in the cold. The running, oh the hideous running. The competitive aspect of it all. And the fact that I was never very good at it. If it needed even the slightest bit of hand eye coordination, I was guaranteed to fail miserably at it.

And also (my friends who are reading this will laugh at this next bit because they can attest that it is 100% true), if there was a ball present in a 30 metre radius of my head, it would hit it. Guaranteed. It was like I had a flashing target on my head saying ‘Aim here’. So I not only didn’t like sports, it was actually rather dangerous for me to take part in them, or to be anywhere near a sports game of any kind that involved balls… (no sniggering please).

One exercise I actually enjoyed as a kid was dance and ballet. I loved it. The cute pink tutus we got to wear, my mum putting my hair up in a neat bun with a silk ribbon wrapped around it. I loved the gracious intentional movements, the calm classical music playing in the background, the beautiful neat synchronicity of it all.

I got lost in it and for the first time I felt like my mind and body were perfectly aligned. I think I would have continued with it, was it not for the fact that I was so painfully shy as a child.

I had a ballet recital and unbeknownst to me my mum had invited all my family to come and watch me. She was so proud of her little girl, but to me, seeing all those eyes staring at me, put me into a state of pure panic. Even though they were clapping and cheering me on, I felt judged and painfully self aware.

My body suddenly felt clumsy and I was no longer in my happy place. My mind and body were totally out of sync with one another.

So sadly, at great disappointment to my dear mum, I never went back to the class after that…

To me, exercise growing up was full of embarrassment, pain and judgement. It felt like it was all wrapped up so tightly with my own sense of self-worth.

There was no way for me to see exercise in any other way than pure punishment.

Then as I hit puberty, it got even worse!

Your body starts to change. The changing rooms become an absolute pit of despair and angst, trying desperately to hide every wobbly bit and stretch mark that seemed to just appear over night. And wow teenage girls can be brutal with their scrutinising stares and backward compliments.

‘Cute T-shirt’, they would scoff, as they looked you up and down with what can only be described as disgust, flicking their perfect shiny hair in your face as they walked away giggling.

The boys were no better. Swimming lessons, where you had to wear a swimming costume with BOYS present, was like the worst thing I could ever have imagined at that age. I always ‘forgot’ my swim kit and happily took the punishment of detention each and every time over exposing my newly pubescent body to a class of ogling teenage boys.

And then, at the tender age of 13, there were periods. Oh my gosh, suddenly out of nowhere my period started and the excruciating cramps would make it near on impossible to stand up straight, let alone run around playing hockey in the freezing damp British winters.

‘How does anyone do that?’, I would shout at the TV every time another tampon advert came up on the screen. It would always show women running around playing sports in small white shorts (white, really?), with a smile on their face. ‘How is she smiling???’, I would continue to shout in utter confusion, clutching onto my hot water bottle for dear life.

Exercise then became about body shaming, comparison and even more judgement and pain. I felt like a failure that I couldn’t participate in something that seemed to be so simple and fun to everyone else around me.

‘What is wrong with me?’, I would often ask myself.

In all that time no one actually explained to me that I was already doing a lot of exercise, without me even knowing about it.

Every chance I got I was out in nature. Either out walking somewhere or playing around in my garden. I also enjoyed dancing around my bedroom to pop music, coming up with dance routines with my friends. Or I was play fighting with my brother, practicing wrestling and karate moves. I often helped out around the house doing the hoovering and cleaning which would work up a sweat.

I didn’t see any of these as exercise because it was actually enjoyable. There was no competition attached to it. I didn’t have to wear any special fancy outfits. There was no one else around judging me or telling me I won or didn’t win (ok, maybe my brother liked to rub it in my face when he won at wrestling each and every time!).

But I never felt like a failure with any of those things. Therefore, I presumed it wasn’t ‘proper’ exercise and no one thought to correct me.

As I got older, I tried multiple times to get into ‘proper exercise’. I tried running, but I often felt unsafe running by myself. The first time I went out for a run around my village, a bunch of men started to shout crude sexual comments at me from their car windows.

That single incident put me off for months.

I then tried again and got into a bit of a rhythm with it, but then winter came and it got dark by 3pm. Again, I didn’t feel safe going out in the dark by myself, keys clutched between fingers, so I stopped altogether and hung up my running shoes for good. It all felt too hard.

I then tried to go to my local gym, but even then I felt unsafe with men’s eyes following me around the room. I would also compare myself to the other women around me, with their immaculate lululemon outfits that I could never afford and I would end up hating myself even more.

So then as I got older, exercise became even more about comparison and hatred of my body, with the extra threat of being over sexualised and feelings of compromised safety thrown in for good measure.

It felt like there was barrier after barrier put in my way, preventing me from being able to fully enjoy exercise.

It was only when I started to do at-home workouts that I finally became more comfortable with exercise.

I loved doing my Davina McCall workout DVDs. She made it fun with her hilarious commentary and funky pop music blaring out in the background.

I bought weights and resistance bands. I bought a yoga mat and started to do the ‘Yoga with Adriene’ videos on YouTube.

FINALLY, it all started to click into place.

‘Exercise can be enjoyable!’, I rejoiced.

But then, over time, I noticed that I couldn’t do as much as every one else. I often couldn’t finish a whole workout. I would get injuries and huge energy crashes after each session.

‘Was I doing something wrong?’, I often thought to myself.

For years I would go through cycles of trying to exercise and then having deep crashes in my energy and health. I would often go to the Drs to try to get some answers, but they would tell me its because of my hormones or I was being anxious, or some other reason that would absolve them of any responsibility.

I self-referred to physiotherapists multiple times with neck, back and shoulder pain, but they often told me I needed to exercise more.

Round and round I went.

Again, I felt like a failure. I just couldn’t do what everyone else could do. My body began to be a source of great disappointment to me.

But then in 2024, after many years of searching, I got diagnosed with the autoimmune disease Ankylosing Spondylitis (AS), a type of inflammatory arthritis of the spine and pelvis, which came with a whole host of other debilitating symptoms.

I had been living with pain and fatigue for almost 10 years at that point.

Nearly a decade of thinking I was a failure. A feeling I thought I just had to learn to live with, whilst everyone else around me seemed to thrive.

The ironic thing is, that one of the main ways of treating AS is with physical therapy and exercise. I had to laugh when they told me that. All these years I had been trying desperately to get along with the idea of exercise and find something that was suitable for me, with no such luck, and here they were saying I needed to exercise, with zero information or guidance on how to actually do that safely.

The even more ironic thing is, that another symptom of AS is crippling fatigue. So your body feels in constant opposition with itself. You desperately want to move to soothe your stiff and fusing bones, yet you have zero energy to do it.

‘Here we go again’, I thought. More cycles of exercise then crashes in my energy.

Over this past year, since my diagnosis, I’ve had to relearn everything all over again about what it means to exercise.

And do you want to know the biggest thing I’ve learnt over that time?

How to change my mindset about what exercise really is. I don’t even call it exercise anymore, I call it movement.

I’ve had to work with my body, not against it. I have to see movement as medicine, not punishment. To see it as something that is making me feel better, not as a tool to hate myself or to feel immense guilt over.

This has of course taken time. I’m nowhere near perfect. I still have my days where I push myself too much or feel guilty about not doing enough, but that’s ok. I now see it as a work in progress. I have my whole life to work on it. It’s not something I do a few times to get to my ‘goal weight’ or ‘bikini body’ and then stop.

Movement is all about sustainability. It’s about building habits over time that work for me. Pacing myself, having plenty of recovery and rest days, without guilt. I’m learning to listen to feedback from my body and adjusting my movements slowly over time to suit my needs.

I’m no longer competing against anybody else now, only building upon my own goals.

For now that means a few walks here and there in nature. A few gentle stretches. On the days I have high fatigue that may mean a few stretches in bed, or just standing up in the shower. Other days, stretching may mean following along with a yoga video at home or adding light weights and resistance bands to a workout video.

Movement to me is also doing the chores around the house or walking up and down my stairs at a snails pace. Movement is helping my dad out in his garden, pulling weeds up or planting a small patch of bulbs. It could mean playing with pets or climbing in and out of our campervan.

And of course, my most favourite movement of all… dancing along to cheesy pop songs in my bedroom, minus the dance routines….mostly.

Overall, I’ve learnt that exercise doesn’t have to be intimidating or a way of punishing myself.

Exercise is just movement, and movement can be fun AND medicine for your body, no matter what body you happen to be living in…

How about you?

Do you find it hard to exercise due to your chronic illness or fatigue? Did you have much help with how to pace and build up strength? Did you have to reframe how you saw exercise and movement after diagnosis? Do you still have moments of guilt or comparison? What movement do you enjoy? What has your relationship been like with exercise over the years with your changing body? I would love to know in the comments below!

Leave a comment

See you next week!

Lots of love & hugs,

Amanda x

Resources- Things that have helped me and they may help you too!

• The NASS charity page with a range of information about exercise and AS

• Exercise Well with Autoimmunity book by Zoe McKenzie- she is a physiotherapist with several autoimmune disorders herself so she really understands what its like to live with pain and fatigue and how to exercise around these things/work with your body. She’s also on Instagram!

• Train Happy book by Tally Rye- a good book about challenging your mindset when it comes to exercise. A more holistic approach to movement with some workout plans included in it you can do from home.

• I love following a lady called Ali DiGiacomo on Instagram (Anotherdaywithra). She is a Fitness trainer who also has rheumatoid arthritis. She is so joyful and funny its hard to resist her enthusiasm when it comes to movement and exercise. She shares lots of tips and tricks and also does (paid) workout plans on her website HERE.

• I love doing the Yoga with Adriene videos on YouTube. There are so many different ones to choose from depending on what your mood/energy levels are like. I’ve always found her so calming and I love her sweet dog Benji that always accompanies her on the mat!

• I found this Diary of a CEO podcast episode fascinating- Dr Stacy Sims is an exercise physiologist who explains nutrition and exercise specifically for women (who have been chronically under researched for decades). She talks about differences in our lung/heart capacity, blood sugar levels, how best to exercise, working with our menstrual cycles and during menopause. She also talks about why women get more knee injuries and what exercises we can do to reduce these. I wish they told us this stuff in gym class at school!

• I found this YouTube video helpful regarding SI joints (SI involvement is a classic sign for AS)- Dr Ryan Peebles explains what the SI joints are, how to stabilise them by explaining what exercises to do and ones to avoid. The main take-away from the video for me was that glute bridges are really good for SI stabilisation, so I’m now incorporating those into my daily stretches!

And as always, please feel free to mention in the comments some good resources that you have found helpful too!

Leave a comment

It pains me, but I’ve cancelled my Netflix and my Apple TV subscription. I’ve also been busy creating a cosy book nook and an inviting writing space in my home. I’ve carved out time in my calendar and I’ve told my husband between ‘this time and that’, I need space to write, which he graciously agreed to.

All this ensures I have no excuse not to write.

I have also drawn a picture in the front of my notebook of who I think my inner critic looks like. You know, the one that tells you to give up on being creative as it’s all a waste of time and effort.

I’ve then put a big fat red cross through it.

‘Don't listen to her’, it warns me.

For some reason, my inner critic looks like Ursula from The Little Mermaid. I was terrified of her loud booming voice as a child. I would fast forward her parts on my little mermaid cassette tape that I would religiously listen to on my Sony Walkman.

In the end, I couldn’t even listen to that tape anymore because it scared me so much. So even though I loved listening to the adventures of the mermaid and her charming little sea friends, even though I adored singing along to the songs at the top of my voice, the very thought of Ursula and her big scary voice was too much for me to bear.

It's funny isn’t it, how much we let fear hold us back from the things we love.

Every time I sit down to write I have to block out the voice of that inner critic. She (Ursula) says such terrible things to me.

‘Why bother writing, nobody will read it’ she booms and hisses. ‘You can’t even spell properly’, she cackles sarcastically. ‘You call yourself a writer, what have you ever got published?’, ‘You’re a bit too old to start all that rubbish aren’t you?’.

She’s quite the bitch I tell you.

But I’m determined to not let her win. Because when I do sit down and write and let the words flow from me, they are always full of such compassion, beauty and wisdom.

For me, writing is my creative passion of choice. Ever since I was little I have kept diaries. Other people collect things, but I collect words. Little word treasures and trinkets that I hoard away in my notebooks and reread when I need inspiration and cheering up. Things like quotes from famous authors. Stories and ideas that I had whilst on my walks. Words that sounded nice and I thought may go well in a poem one day. But mostly, I record my own memories and adventures.

I have kept diary after diary, year after year. They probably look like mad scribbles to anyone else reading them.

But to me, they are my most prized possessions.

My old diaries, quite literally, feel like old friends.

There have been times in my life where the critic became so strong that I nearly gave up on writing altogether. Times when I was too busy, too tired or seriously low in self-esteem after countless rejections.

But whenever that starts to happen, whenever I let the critic start to win, I seem to always have the same recurring dream.

The dream is of me, but I’m in my 90’s. I have white hair and many wrinkles, my face like a map of memories. I’m sitting at my desk, blanket over my lap, a pen sitting in-between my gnarled arthritic fingers. I’m writing away in my diary, looking out of the window at an orchard of cherry blossom trees. I can barely read the scrawls that are left on the page, as both my hands are frail and my eyesight weak. But I have this gentle and content smile on my face.

I wake up from my dream with tears in my eyes, happy tears.

I’m always at my most content when I am writing with my old friends; pen and paper.

It then dawns on me….that friend who has kept me company all those years, is in fact… me. I’m the one who has written all those words. It’s my hand that has glided across those pages. They are my memories, my records of sadness and glimmers of joy.

My diaries have been time capsules of friendship. A contract to myself that I have kept all these years. A way of showing myself that I matter. I matter enough to record every stage of my life. I matter enough to allow myself the time to be creative and let those words tumble onto the page, no matter how loud that inner critic shouts.

I think there is such beauty in that. Love letter after love letter to myself, page after page.

To me, love me. From a life well lived.

So now when I sit down to write, I think of 90 year old me and ask myself;

‘What would she like to read?’

I know she wouldn’t care about spelling or grammar. She wouldn’t care what the most fashionable thing was to write about. She certainly wouldn’t give a shit about what my inner critic was telling me not to say.

‘Just write’, she would tell me.

She would get annoyed if I let my ego or pretentiousness get in the way. She would see straight through that bullshit.

‘Get to the juicy part’, she would say eagerly. Get to the real bits. The authentic parts.

She would want to know everything; the joys, the grief, the adventures, the insights and those thunder bolts of wisdom that seem to come from outer space and hit you in your heart and soul.

She would be so happy that I didn’t leave anything out. She’s greedy like that, she has always loved to collect those delicious words, safely capturing them forever between the pages.

And that’s why I will never give up on being creative, even when that inner critic gets so incredibly loud. I will never think it’s a waste of time or too frivolous.

As I know that future me will find it all such a blessing. I will find such comfort in it all. Even when I’m old and I have no family left beside me. Even when my health is at its all-time low, I will always have my words and my diaries. They will always give me that quiet content smile on my face as I read back over them, keeping me company as I look out at the beautiful cherry blossom trees.

A time capsule of friendship.

To me, love me. From a life well lived.

How about you?

What is your creative passion of choice? Do you have an inner critic telling you to stop doing it? What do you imagine the critic to look like? What other things try to stop you from being creative; is it energy, pain, time, space away from distractions? How do you get around those things? What do you tell your inner critic? Do you write a diary and does it bring you comfort too? I would love to know in the comments below.

Leave a comment

I hope you have all had a gentle start to the year?

See you next week!

Lots of Love & Hugs,

Amanda x

Hello all,

How was your Christmas? I hope you managed to find some moments of festive joy. If you have a chronic illness, it can be a tough time of the year, as the illness doesn’t magically turn itself off, no matter how much we wish it would. But I hope that your pain and your flare ups were kept to a minimum. I myself felt quite fatigued and I had a few IBS flares (I’m sure it had nothing to do with all the chocolate I was consuming….), but overall we had a lovely time with our family and friends.

My husband and I also managed to find some time to rearrange our respective creative areas in our home. We fancied a change. We wanted to bring in the new year with our home feeling like a cosy sanctuary. We ended up moving my writing desk by the window, so now I have plenty of opportunities to daydream out at the old oak trees and to indulge in stolen moments watching the crows cruise around in the wind.

My husband moved his musical instruments to another room where he can make as much noise as he wants. We often chuckle to ourselves. He has ADHD and bags of energy. His way to recharge is to play drums, play loud music, play video games and move around like the cartoon character Taz; a whirlwind of energy and hyperfocus. Whereas I’m at the opposite end of the spectrum. I need calm solace and stillness. My energy levels are always flashing red, about to run out. I need to move at a snail’s pace. The way I recharge is to read books and have long leisurely stretches of time where I deeply contemplate the meaning of life. But we make it work. We understand each other and we work to our strengths. Opposites do seem to attract after all.

We’ve learnt over the years what we both need to function and what keeps us at our best.

I’ve had to relearn what this means going forwards with chronic fatigue and inflammatory arthritis, we both have. This past year has been a lot of trial and error, figuring out how much I can do, how much I need to pace myself, how much I need to rest.

We’ve had to strip back to the very basics and relearn everything again from scratch and what it means to function at our best. The main questions have been ‘How do we reduce as much stress from our lives as possible?’ and ‘How can I reduce the inflammation in my body in a sustainable way?’.

We’ve had to look again at our diets, our sleep patterns, our movement and exercise needs. Our environment. Our work/life balance and our social commitments. And most importantly, our mental health.

This year I finally admitted to myself that I needed help with this aspect. My depression and anxiety were consuming me. My nervous system was on high alert at all times and I knew this was causing a lot of unnecessary stress to my body. So I gave myself one of the greatest gifts that I’ve ever given myself; therapy. I can honestly say that its changed my life. I hadn’t realised how much emotional baggage I was holding onto. I didn’t realise how often I was talking negatively to myself and how I was warping my own perception of the world. But ultimately, I didn’t understand that I was actually living with deep grief and I needed to give myself some grace. I was grieving my old life, my old body, but also my future. The future I thought I was going to have.

I look back now and think ‘Of course I was grieving’, it seems so obvious to me now, but when you live with depression, it destroys your self-esteem and your self-worth, as well as your ability to feel joy. It corrupts your sense of reality.

My therapist guided me and showed me that since becoming ill I had lost my job, my purpose, my energy and even certain friends. I was living in constant pain and uncertainty. All this with very little support from the people who I thought were going to be there when things went bad, like Doctors who would listen, instead of distorting your sense of truth. Of course I would be struggling, anyone would be in the same situation. I needed to show myself some kindness.

It took months, but my nervous system has finally started to calm down. My self-esteem has started to increase. I now honestly believe that I deserve better from life and I want to start living it to its full potential. It will look very different from most peoples, now that I have this illness, but it will be my life.

During all of this, there has been my husband. My rock and safety blanket. He has shown me time and time again that I can rely on him even during the darkest of times.

The biggest way he showed this to me this year, was when we got married back in March. He wanted to show me that he was committed, literally through sickness and in health. We had a beautiful and intimate ceremony up in the Yorkshire Dales. Our personal vows to each other perfectly summed up our love and commitment to each other. We truly are life partners.

I honestly think that being there and showing up for someone, even when they are at their absolute lowest and can give you nothing in return, is one of the most loving things that anyone could do. I now completely understand what they mean by ‘Love is selfless’. This year I haven’t always been able to give back what he gives me. I’m not sure I could ever put into words how much I appreciate him, but I will keep showing up for him in all the ways that I can. One way to do that, is to work on myself; my mental and physical health. He always says ‘You are enough as you are’, but I want to be the very best version of myself, for him and for me.

Even through all the hard times, we’ve managed to have many glimmers of joy. We’ve been on many adventures together in our trusty VW campervan, we saw our favourite band in concert, we honeymooned in the dreamy Lake District, and we even welcomed baby nephews to the family.

Over this past year, there have been many tender moments of happiness. We learned how to slow down, soften and compromise. We practiced clear and loving communication with ourselves and those around us, but it hasn’t always been easy or smooth sailing.

There has also been loss of family members, health scares to those close to us, many nights waiting and fretting over long awaited appointments and test results. There was also job redundancies and a few months of not knowing when the next pay check was going to come through. There were many highs and many lows to contend with in 2024.

We’ve also had to relearn our roles, not only with each other, but also in how we show up for those around us. This has meant putting boundaries in place and prioritising ourselves as a couple at times, which felt like foreign territory. We are both chronic people pleasers.

Putting boundaries in place caused immense guilt and friction at first, but like anything, the more you do it, the easier it gets. It has been good practice, because I have recently been given the all clear to start my new immunosuppressant medications for my ankylosing spondylitis. This will hopefully mean less inflammation and less pain, but it will also mean putting even stronger boundaries in place to protect my health and immune system. I’m sure there will be many more lessons to be learned in the year going forwards.

However, before we zoom forwards into 2025 writing out a whole list of things we want to achieve, I think it’s important to reflect back on the previous year. It was all too easy for me to reflect on the negatives and to say 2024 was shit because it was the year I got diagnosed with a life altering illness. However, the more time I sit here and reflect, the more I realise there were so many magical moments. In fact, 2024 may have actually been one of the best years of my life.

I have learnt so much about myself. I now realise I am bloody strong and resilient. Strength does indeed come in many forms. I have formed deeper connections with those around me and said goodbye to the people that couldn’t show up for me. I have had time to calm my nervous system and let go of years of emotional baggage. Whilst a lot of time has been used resting, it has also been used to write and create. It allowed me time to create this Substack page and form this growing community, which I am so thankful for.

Overall, I’m really proud of myself this year. I survived!! I feel I got through it with grace. And it wasn’t because I ‘fought’ my way through. It was actually because I ‘let go’ and surrendered. I learnt to relax and to be adaptable, instead of trying to push through with old rigid behaviours.

Before this year I would have ignored what my body and mind were desperately trying to tell me. I would have let the guilt and societal pressure get the best of me. But now, instead of beating myself up for not ‘achieving societies goals’, I am trying to show myself kindness instead.

I told myself over and over again ‘You are worthy of love’, no matter what I managed to achieve each day. I allowed myself to rest and recuperate when I needed to. I listened to my body. I treated myself like I would a friend, instead of my own worst enemy.

When I first got diagnosed at the start of the year, I felt very let down by my body. I felt betrayed and dissociated from it, trying to shut down the parts that were in pain. But now I can see that is a totally unsustainable way to live. Your body really is just trying its best to survive. I’m learning that I need to work with my body, not against it, and that is what I want to bring forwards into 2025.

I want to give my body the best chance. I want to eat healthy not because I want a ‘beach ready body for summer’, but because healthy food is nourishing and essential for building a body that can experience joy and laughter and love. I want to exercise to move my body and to feel good, not to punish it for eating calories. I want to rest without guilt, because its essential, not a luxury we have to earn. I want to continue to write and to be creative, not as a way to show people my worth, but for spiritual freedom and for the pure joy of it!

Ultimately, I want to make realistic goals to make myself feel even better next year, not as a way to layer more guilt and self-hatred onto my to-do list. I know I won’t always be able to achieve the goals I want, but just knowing I’m trying my best will be good enough for me.

And if you've had a weird up and down year like me, just remember that the year may have been tough, but you were tougher! You may have experienced every emotion under the sun, but you made it through and I am incredibly proud of you (and me)! Each and every hard time you had, you survived. You kicked it's butt. Ok it may have been a fatigued tap on the butt at times, not a roundhouse kick, but it still counts!

How about you?

Do you have any goals for next year? What attitude do you want to bring into the new year and what do you want to leave behind? Was 2024 a good year to you, or are you happy to see the back of it? What did you do that made you proud of yourself? How do you celebrate New years or do you treat it like any other day? I would love to know in the comments.

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I hope 2025 is a kind year to you all. Keep looking for those little glimmers of joy and happiness- the reasons to keep going.

I hope you will continue to follow me along on my journey and I’m looking forward to seeing what happens to our little community here on Substack.

One of the biggest lessons that 2024 showed me, was that you can’t do it all alone, especially when you’re ill- you need a community. So thank you to each and every one of you, you have honestly made such a difference to my year. Thank you for being here with me and making me feel less alone.

See you next week (year!)

Lots of love & hugs,

Amanda x

Ahh Christmas. They sing songs about you, the shops prepare for your arrival months in advance, children’s eyes light up as you approach, but for me, this year, you feel like the ultimate big boss at the end of a game. The final challenge of the year, possibly the biggest one yet. You feel like everything I have been trying to escape from. Noise, flashing lights, crowds, sugary foods, itchy jumpers…

The last few years, since being diagnosed with a chronic illness, I’ve really struggled with big events and social gatherings. A huge part of my chronic illness is having crippling fatigue. I get overwhelmed and overstimulated at the slightest thing now. I have to control my environment and limit what I do so carefully, otherwise it puts me into a flare up or makes me have a complete meltdown (yey, doesn’t that sound fun…).

How Christmas can be overwhelming…

But Christmas is such a joyful time of the year, I hear you say! However, Christmas has so many elements to it that could pose as a challenge for us chronically ill folk. I’ve listed a few below, but of course we each have our own struggles and to different degrees. I’ve also tried to come up with a few possible solutions, or at least ways to ease the burden.

What are some of your tips and tricks for when you feel overstimulated over the festive period?

My main ones are as follows:

• Large social gatherings- which means many people each with their own needs. If you are like me, I find it hard to put boundaries in place and usually go with what other people want, so as not to ‘cause a fuss’, but it usually ends up with me not looking after myself…leading to a flare up. One social gathering could put me out of action for weeks.

  Possible solution: Could you designate a ‘quiet area’ in your home or ask whoever is hosting if there is an area you could go lay down if it all gets a bit much?

• Noise- more people means more conversations going on. Multiple conversations happening at once really hurts my brain. In fact, talking in general really tires me out as it flares up the arthritis in my ribs. Even more so if Christmas music is blaring out over the top of it all.

  Possible solution: Could you wear those ear protection buds, like loop ears, to minimise the noise? I like to sit on the ends of tables so I can make a quick exit if I need to. I take multiple trips to the loo just so I can zone out and take a few deep breaths. Could you have a secret signal with your partner to ‘take over’ the conversation, or to leave, if you feel yourself getting overwhelmed?

• Germs- a lot of people all in one place also means germs. Especially around this time of year with flu, norovirus and covid running rampant. If you have a compromised immune system, this could spell disaster.

  Possible solution: It could mean asking people to wash hands, mask up, or to warn you if they have a cold etc. This can be incredibly tricky, especially when wearing a mask is seen as a political act these days, with bans in place in areas of the US. Could you get a HEPA air filter for your home? And/or put hand sanitizer by the front door as guests come in?

• Washing up and tidying the house- Getting your home ready for guests can be really energy zapping. I usually spread out the cleaning of my flat over several days. I can’t clean the whole flat in one go without getting extremely fatigued. So if you are hosting or people are coming to you for Christmas, it could mean getting the house clean and tidy, setting up beds, putting out extra towels for guests, more washing up/laundry to do.

  Possible solution: Could you spread the tasks out over several days/weeks so as to not tire yourself out? It could mean asking for help, or asking if someone else doesn’t mind hosting this year. Or it could simply mean telling people to deal with your messy house. ‘Like it or lump it’ as they say!

• Cooking- Argh even the thought of cooking this year fills my body with dread, but thankfully I only have to cook for 3 this year and my husband is getting his pinny (apron) on to help out. I find its not just the actual cooking that’s tiring, it’s the mental load of meal planning, making lists, food shopping, timings of when to put everything in the oven.

  Possible solution: I have bought a stool to sit on whilst cooking now, as standing in one spot really hurts my lower back. Is there any other special equipment that could ease the load? I also try and prep as much as possible beforehand- chop/peel/freeze stuff, so it’s not as daunting on the day. Or buy pre-prepared food e.g. I’m buying frozen roast potatoes that I can just shove in the oven, as peeling can be sore on my hands. I also make lots of lists for timings and set multiple alarms on my phone so I don’t forget to do something- brain fog is a bitch! Of course there is always the option to go out to eat, we did that last year at a local pub, but it usually costs a small fortune at Christmas, which hasn’t been an option this year. If you are hosting, could guests each bring a dish of something to lessen the load (and cost) on you?

• Food- If you are anything like me, a lot of foods are my nemesis. Since having this chronic illness, things like caffeine, alcohol, sugar, dairy, gluten and even certain fruits and vegetables, can cause me inflammation which leads to a flare up or a very sore IBS belly. Who wants to spend Christmas on the loo? Not me!

  Possible solution: So it may mean bringing your own alternatives to gatherings. Perhaps eating beforehand and only eating select nibbles. Could you discuss with the host your diet requirements and offer alternative ideas for them? If that all sounds daunting and a way of pissing everyone off (why do people get so offended when you have different food requirements?), it could even mean skipping the main event and telling people you will come over for just ‘drinks’ afterwards.

• Travel- If you are going to someone else’s for Christmas, it could mean travelling. For me, sitting in the car for long periods of time is very painful due to the arthritis in my back/hips.

  Possible solutions: It may mean planning in extra stops or making sure you bring with you a ‘survival pack’ e.g. pain killers, heating pads etc. If you are travelling by public transport, this could be stressful due to cancellations, crowds, exposure to germs etc. Is there a way of breaking down the journey into more manageable chunks? Do you have a plan B in case there are delays or cancellations? I also don’t like staying over at other peoples homes anymore. It’s nothing personal, but I just can’t sleep on sofa beds or couches with the state of my spine these days. One bad sleep could cause weeks of a flare up. I often have to get up multiple times in the night to stretch and I feel I would disturb people if I did that. So now, the husband and I either stay at a nearby hotel, our campervan (we have a super comfy bed in there with a special mattress), or we just leave the party early and go home (I know, party poopers, but needs must!).

• Buying presents- I haven’t been able to work the last 2 years since having this chronic illness. Money can get pretty tight, which means buying presents for everyone can be tricky. I hate traipsing around the busy shops at Christmas time too- even 5 minutes of that could cause me to flare up.

  Possible solutions: So this year I have bought only from local shops and independent businesses that are in a few minutes walking distance from my house. I mostly bought from my village charity shops, which helps my own purse strings, helps the local community and gives money to charity, win win! There is also the option of buying online, gift card options which you can get from supermarkets, OR you could ask if people are willing to do secret Santa, so you only need to buy one present instead of many. If you are a crafty person (as in Arts & crafts) or like to bake, could you make your own prezzies?

• I’ve also listed some amazing gift ideas at the end of the blog- gifts that would either be great for people with a chronic illness or help support fellow Substackers!

  Please feel free to add your own recommendations in the comments too if you have a book, artwork or Substack subscription etc you think people would enjoy :)

Christmas can bring mental and emotional stress…

If none of these solutions even seem remotely possible, it may mean having to completely change what Christmas looks like to you and your family from now on. This can be upsetting. It may mean saying goodbye to old ways of doing things. It may mean putting strong boundaries in place, which may mean potentially upsetting a few people.

Christmas has such strong traditions attached to it, people have such fixed ideas in their head about what it should be, that it can be very hard for people (like those with chronic illnesses) to ‘rock the boat’ and to alter the plans trying to make it more accommodating for themselves. But you deserve to have a good time too!

And all practical stuff aside, this time of year can be really challenging for mental and emotional reasons. It could make you think more of the loved ones you have lost and are no longer here. I know I think a lot about my mum and my grandmas who have sadly passed away. It makes me think of past Christmases and how magical they used to be compared to now. I often get nostalgic and end up having a little cry at some point during the holidays (does anyone else do that, or just me?). I now light a candle on Christmas eve which gives me some quiet time to think and reflect on lost loved ones. We also have Christmas tree decorations with their names on, so it makes it feel like they are still part of the special day.

Being around extended family/friends and large groups could be overwhelming, especially if they don’t understand your illness. They could ask you questions you don’t particularly want to discuss or they may offer unsolicited advice. ‘When are you going back to work?’, ‘Do you feel better yet?’ ‘Have you tried such and such to cure it?’ etc. They could make you feel like you are being a diva for putting boundaries in place which could be incredibly draining, feeling like you have to constantly explain yourself. Which you don’t btw- you don’t owe anyone an explanation. I like what my therapist says; ‘No is a complete sentence’. Or I usually just turn the conversation back to them, people love to talk about themselves! Or just point to something shiny across the room to distract them and run away (joking…not joking).

It could be a time of year that you feel particularly lonely and isolated. You may see everyone else going off and having fun, whilst you are spending a quiet one at home, possibly in pain or having a flare up. Social media can make this worse- just remember that people only post their highlights. They don’t always show you the messy behind the scenes. For example, they may have piles of presents but don’t show you the debt it caused them. They may show you a perfect family photo, but not of the arguments that happened after a few drinks. It may mean limiting your time on social media for the time being. It may also be helpful to write a gratitude list instead, focus on what’s good in your life (trust me, there is always something, even if its something small like ‘I’m grateful for this warm cup of tea’).

Your routine may have drastically shifted and that can be uncomfortable to deal with e.g. differing eating times, sleeping patterns, the people you may rely on for support may be going away for the holidays. I know that I thrive off a good routine these days and the holidays can be a strange disrupting time where you forget what bloody day it is- especially the time between Christmas and New Years! I’m going to try and keep to a good sleep routine if nothing else, as without good sleep everything else crumbles for me.

But overall, it’s important to be kind to yourself this time of year. I know it’s easier said than done, but I’m trying to take the pressure off myself this year. If I end up having a flare up or spending most of the time wrapped up in bed due to fatigue, then that’s ok too.

I also want to start making my own traditions that work for me and my husband. I’ve started to think ‘What would a perfect Christmas look like now?’. For us that means peace, downtime, relaxation, quiet, spending time with loved ones, cosy pj’s and crackling fires. I think for future Christmases my husband and I may even go away in our VW campervan and find a quiet nook in Scotland. We could put fairy lights up inside, play Christmas movies on our projector. Or find a cosy pub and watch the snow fall outside. Ahh bliss.

How about you? What would a perfect Christmas look like to you now?

Is there anything in particular you find difficult around this time of year? Have you come up with new traditions since becoming ill? Is there any tips and tricks you want to share with us? What are you looking forward to the most? I would love to know in the comments below!

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Merry Christmas

Whatever you decide to do, I really hope you manage to find some joy, magic and peace amongst it all. I hope you don’t experience any flare ups, but if you do, try not to beat yourself up. You didn’t choose to have this chronic illness, you are just trying your best. Give yourself the gift of kindness and just know that you are not alone. I shall be thinking of you all this Christmas *scatters magical energy sprinkles to all*

Thank you!

I also just want to say a huge thank you to everyone who has subscribed, read my blogs, joined in on the comments or liked my stuff. It really has made such a difference to my year. I’ve managed to reach 102 subscribers and I’m over the moon about it. It means that we are starting to build a lovely little community here.

No post next week…

I’m giving myself Monday 23rd off for the Christmas week, so no article then, but I shall be back on the 30th December. I shall do a round up of the year, what I have learnt so far since being diagnosed and intentions I aim to set for 2025. I hope you can join me then.

Wishing you all a very Merry Christmas!

Lots of Love and hugs,

Amanda x

Gift ideas for your chronic illness friends/family. Or a little treat from you to you! (Because why not, you deserve it):

• Epsom salts- I use buckets loads of this each month! Its great for all those aches and pains

• Blankets, hot water bottles, heating pads- these are all great for pain and stiff joints. Or if you are like me, I swear I’m part lizard/cold blooded and need other heat sources to stay warm…

• Cosy bedding or Pjs- it’s where we spend most of our time so we may as well look cute whilst doing it right?

• A cute tracksuit set- for those days you just need to wear something cosy and less restrictive. I personally love a brand called Goose and Gander.

• Loop ear buds- for when you are feeling overstimulated. I recently bought some really cute rose gold ones and they have improved my life so much!

• Cute stationery/diary/list pads- if they/you are anything like me, I love to journal and write a diary, it really helps to get all my jumbled thoughts out instead of taking up space in my brain. I also love to make a list for when the brain fog/fatigue is strong! These personalised ones by ‘Papier’ are so pretty!

• Arts and crafts- I’ve noticed that the chronic illness community are an incredibly creative and talented bunch. Could you get them some new paints, a knitting/embroidery set, a lego set!? Do you always see your loved one with a nose in a book- perhaps book vouchers would be good? Or a Substack subscription of their choice?

• Cook books- Becky Excell does some fabulous gluten free cookbooks. You can find them pretty cheap on Amazon. She also has an 'air fryer’ cookbook which is great if you need quick, easy, simple, gluten free recipe ideas!

• Can you donate to a charity in someone’s name? A charity close to my heart is NASS (they offer support to people with Ankylosing spondylitis)- they are currently doing a Christmas raffle and you can buy tickets here, with a chance of winning £500!

• Perhaps you want to support fellow Substack friends, such as:

• ‘s dreamy book ‘Just like a Movie’ available on Amazon HERE

• ‘s inspiring book ‘Unleashing my Inner Power’ available on Amazon HERE

• ‘s gorgeous paintings and loads of other goodies! Available HERE

• has some really adorable prints to buy HERE

If you have anything you would like to share then please leave a link in the comments : )

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It would have been my mums birthday at the end of November. She died when I was 12 years old, of bowel cancer, over 20 years ago now. I think a lot about her at this time of year. I wonder what she would have looked like, what our relationship would have been like and how different my life would have been if she was still here.

Recently, I have also been wondering what she would have thought about the state of the world right now.

I idolised my mum. I still do. I have such fond memories of her. She was nurturing, kind, funny, and sassy when she needed to be. She was a great listener, a hard worker and the glue that held our family together. Even when she was dying she was making sure that we we’re all ok. She was incredibly brave. She was a great mum and a great female role model to me. I miss her every day.

I miss her more at times like this, when the world feels like it’s gone (more) chaotic and unsafe. I would love to be able to turn to her and ask for her advice; mum to daughter, woman to woman. Sometimes you just need the perspective of someone you love and trust, someone who gets what it’s like to be a woman, who has your best interests at heart. Someone to remind you of your worth as a woman, especially when this is being questioned again and again by those in power.

When she died, it completely blew up our world. On the outside, it probably looked like we were all coping ok (ish). My brother and I eventually went back to school, my dad back to work. But on the inside, we were all desperately trying to figure out how to cope going forwards. Our family dynamic shifted overnight. We had to relearn our roles and how we fitted together as a family. We each had to take up the slack of the many things mum had done for us, all whilst deeply grieving her loss.

The house got a bit messier, there were less sit down family meals together, less laughter. Christmases and birthdays became hard and full of grief instead of festive cheer. Things didn’t feel as straight forward anymore. It felt unsettled. We were confronted with all the things mum had done for us. It was a shock. She had made it all look so easy. She never complained.

The magic of childhood was now replaced with grown up problems to deal with. This was at no fault to my father. He tried his absolute best to shelter us, but losing your wife and losing your mum changes things, no matter how hard you try to stop it.

I lost my mum at an age of great change. I was just starting to go through puberty. I was growing boobs and needed to buy my first bra. Periods were just around the corner.  I was starting to notice bodily changes; hair in weird places, hormones were flying all over the place, curves appearing. I started to notice boys and how they noticed me. Peer pressure, body image and trying to fit in became a huge threat to my very existence. People start to treat you differently. You aren’t just a kid anymore, you are becoming a woman.

Ultimately you are desperately trying to figure out ‘What does it mean to be a woman?’

I suddenly had all these questions and no one to ask. I had lost my mum, my guide, the biggest female role model I was ever going to have in my life. I had no clue what to do.

Again, my dad tried his best bless him, he really did. No one exactly handed him a manual titled ‘How to deal with your highly sensitive grieving teenage daughter, whilst simultaneously dealing with your own horrendous grief and loss of the love of your life, whilst holding down a job and keeping enough money coming in to keep everyone fed and a roof over your head’.

When my periods started at 13, my dad brought me hot water bottles and chocolate in bed. He tried to soothe me as best he could when the painful cramps started. He even asked women in the supermarkets ‘Which pads do I buy my teenage daughter?’. He was a bit clueless, but at least he tried to understand.

However, it’s just not the same as having your own mum or a woman to talk to. Someone who had been through it. I avoided tampons for years because I had no bloody clue (no pun intended) on how to use them properly. I was too ashamed to ask anyone. Even at that age, I felt shame about my body. I had seen the way girls in class hid their pads and tampons up their sleeves and ran off to the bathroom. Boys pointing and laughing saying ‘She’s on the blob’. Male teachers blushing when you said you had to miss gym class because of painful cramps. You learn from a young age that women's bodies are to be mocked and ashamed of. Even scared of at times.

When my hormones waxed and waned each month, my family often looked at me like I was from another planet. I don’t blame them. I was scared too with all the ups and downs. One minute I was happy, the next I was kicking the kitchen bin across the room. The issue was, I had no one to compare myself to, or any one to reassure me that this was all (mostly) normal for a teenage girl, who was also going through a lot of grief. I didn't know it happened to everyone else, as it happened behind closed doors. You learn that emotions like anger are not allowed to be expressed by young girls. Only the ‘naughty’ and ‘disruptive’ girls at school did that. So I held a lot inside.

You turn to other female role models in your life. Desperate for answers. Desperate for some clues on how you should be as a woman. You look to aunties, grandmothers, your friends, your best mates mum and sisters. They all helped massively, but again, it’s just not the same as having your mum by your side.

Sometimes being around them would make things harder. It reminded me what I was missing. My best friends would tell me conversations they had with their mums, shopping trips they went on, trips to the hairdressers together. I felt like they were all getting these secret clues, all these instructions on how to be a woman and I was missing out on vital pieces of information. I would get second hand information, hand me down scraps of advice. Again, it was helpful, but just not quite the same as hearing it straight from your mum.

A few years passed by and in that time both my grandmothers and my dad’s sister died. I admired them all so much. More female role models lost.

I didn’t realise it then, but I also lost a huge part of my own identity when they died. We are social creatures, we look to those close to us on how to act, what to say, what to think, how to feel. We mirror each other. The question of ‘What does it mean to be a woman’ became even more cryptic the older I got, and with the more women I trusted that were lost from my life.

You begin to widen your search for surrogate female role models; teachers, girls at school, celebrities, people in the media, from movies, books and magazines.

The further you open yourself up to all those different perspectives, the more messy, chaotic, and opposing they all become. You realise too late that not everyone has your best interests at heart. Jealousy, lust, hatred, misunderstandings and outdated thinking often got tangled up with their opinions.

Your own voice starts to get drowned out along the way. You start to loose that intuition. The doubts creep in.

You begin to ask yourself ‘Am I doing this right. Am I woman enough?’

You also start to listen to people’s opinions about what is it to be a woman. Not just from fellow women, but from the men around you too; family, boyfriends, boys at school. Some of the opinions loud, harsh and different to what you feel is true in your gut. You start to notice discrepancies.

People you look up to and love would sometimes say such derogatory comments. You know they love you, so why are they saying those things about women. You still love them, but you don't like what they have said. And that's why it's so complicated. The disrespect is enmeshed so deeply, even amongst the love.

The discrepancies start off subtle at first. Jokes about crazy mothers-in-law, crappy women drivers, hysterical ex-wives. People on telly making fun of female football players, women’s bodies in magazines being torn to shreds because they have cellulite and stretch marks. Women on telly being over sexualised. Constant, subtle (and some not so subtle) digs and jabs at women.

You get irritated by these things. Your body flinches. Your heart races. Adrenaline spikes. Your stomach feels sick. However, when you try to voice it or discuss it with those around you, you are often told ‘It’s just a joke’, ‘I/They didn’t mean it’, ‘That’s just how it was back then’, ‘Boys will be boys’, ‘Lighten up’, ‘You’re being too sensitive’. It wasn’t just men saying this, it was also other women at times, which made it all the more confusing.

So you had to tell your nervous system to calm down. Ignore your instincts. Ignore that flight or fight response that hung heavy in your heart. Trust and don't question those around you in authority, even when it felt off.

Over time, these discrepancies become more sinister. Boys at school call you a slut if you don’t give them attention, but then call Sharon a slut because she slept with her boyfriend that she loves. I don't remember the boys being told off for these remarks, it was always the girls that had to change their behaviour.

Your male doctor doesn’t listen to your concerns about your painful periods and puts ‘generalised anxiety disorder’ on your records instead of endometriosis, so you live in pain for decades. No one heard your concerns after that because you're ‘just anxious’.

Your dad teaches you the best places to hit a man if you ever got attacked, handing you a rape alarm to carry in your purse ‘Just in case’. ‘Don’t wear your headphones at night, as you won't hear them coming’. I’m glad he taught me these things, but it's sad that these lessons have to be taught to young girls. They learn to be afraid.

You hear of women getting killed after a night out, and the news said it was because she was drunk and wore a short skirt and was out by herself late at night, but the next day you wore a baggy t-shirt and jeans and were still verbally harassed by the builders down the road. It was broad daylight and there were many (silent) witnesses.

This was all very confusing to teenage me.

Suddenly there were many conflicting answers to the question ‘What does it mean to be a woman?’.

That’s when you start to live in opposition within yourself.  You can never win. You feel one way inside, but nearly everything and everyone else in society is telling you to feel a different way.

The underlying messages from these misogynistic comments, were basically saying ‘You are less worthy of freedom and choice’, ‘You are less intelligent’, ‘You are weaker’, ‘You are unsafe’, ‘You are vulnerable’, ‘You’re asking for it’, ‘Expressing emotions is wrong’., ‘You are the problem’, ‘You are less’.

How is our nervous system supposed to react to that? How else are we supposed to interpret those comments, other than deep stress to our very existence and worth? Especially if we are hearing it multiple times each day, week, month, over years and decades of our lives. You start to absorb it into your bones, your cells, your very being.

How do we know what to believe? Who do we trust?

As a teenager you start to question things. You start to query what people have said and why. Some return these questions with anger or distain. Some ignore you, speak over you or completely change the topic. When you really start to question things or to stick up for what feels right in your gut, you are often met with resistance, rejection or sometimes violence. You’re called a feminist, like it’s a dirty word. Some stare at you with deep confusion, totally oblivious to the damage they are perpetuating. It's that engrained into the fabric of society. It's that engrained into their bones too.

You are told you're overreacting, being aggressive and not ladylike, you're overthinking, lowering the tone, causing a scene. Know your place. So you start to hide your opinions, retreat, hold your tongue, conceal your emotions. Contort yourself. Wear a mask. When you are quiet people call you a good girl. You get conditioned and brainwashed from a young age. We all do. It becomes a culture, a way of life.

I wish I could go back to my younger self and tell her that almost all of the things you heard from the outside world about what it is to be a woman was completely wrong, sometimes dangerous, misleading, and outright false.

I wish I could tell her to listen to her instincts more. I would tell her to find more strong role models to look up to. Don’t listen to those that don’t have your best interests at heart. I would tell her that sometimes, even the people you love will say hurtful things about you, because you just happen to be a woman. But you have to ignore them, and still love yourself through it all, no matter what.

But the thing is, how do you tell a young girl that?

How do you tell a little girl not listen to most of what they hear, especially when it could be coming from the people they love and depend on. From people they look up to, authority figures, police, teachers, healthcare professionals, peers, politicians, work colleagues, care givers, celebrities, other women….presidents of powerful countries. If I told my younger self not to listen to these people, I would have been unsafe. I would have been rejected from most of society.

So what are we supposed to do? How do we teach young girls who they can trust? How do they filter out all this false information?

It’s so fucking exhausting to constantly question everything and everyone around you. To filter your own self-worth through the lens of everyone around you, just because you are a woman.

It makes you hypervigilant. Stressed. Torn in two. Sometimes you’re aware, but often it’s more insidious. That feeling of unsafe skulks around inside of your body without your conscience awareness. Your emotions get so repressed you don't even know how to feel anymore. Instead you get tummy aches, headaches, panic attacks and tension in your shoulders.

Every time I hear a piece of information relating to being a woman, I have to filter it through years of conditioning. I have to ask myself many many questions first before I let that information take residence inside my mind and my body.

Questions such as: 

Can I trust what this person is saying? Do they have an agenda? Why did they say it if they don’t really mean it? Did they just mean it as a joke? Are they trying to manipulate me? Am I being disadvantaged or disrespected by what they are saying? Is it safe for me to voice my opinion and stick up for myself in this scenario? If I don’t say anything, will that make it worse for other women around me? Are they even aware of what they said? What are the long-term consequences to my body and my health if I don’t advocate for myself right now? If I stick up for myself will I be called hysterical? Will people tell me I’m being controversial, too emotional, too feminist, being too political? Am I safe?

The list of questions goes on and on.

This questioning can happen on a near daily basis. It’s even worse now with social media. We have to be incredibly careful what information we let through our mental, emotional and physical filters.

But you know what questions I ask myself most often now?

How did that make me feel? Why is my body reacting in this way? What is my body trying to tell me? Don't forget that your body holds wisdom.

As a woman, I feel our minds and bodies are in constant opposition with our surroundings.  We’ve had to hold in so much. To filter out so much. To try and cling onto our self- worth, even though the world is throwing so much hatred and distain towards us. Sometimes I feel I have been so conditioned, that I don’t even realise something has annoyed me until I notice my heart racing, or my jaw tighten. We’ve been conditioned to ignore our own feelings for too long.

But it is our bodies that are paying the price for holding everything in.

I have been reading many books and studies recently, which talk about the link between repressed emotions and conditions such as migraines, fibromyalgia, autoimmune disease and gastrointestinal disorders, to name just a few.

Those conditions have also been linked to stress and dysregulation in the autonomic nervous system (the system responsible for the flight, fight or freeze response).

Sometimes I can’t help but to wonder- would I have gotten this autoimmune disease if I was allowed to express myself more? Would I have gotten it if my nervous system wasn’t on such high alert all the time?  

I know there are many different factors to autoimmune diseases e.g. genetics, infections, environmental reasons, diet etc. And of course I still champion modern medicine and all it’s done for us. But I’m shocked at how little modern medicine acknowledges the power of our emotions. Not so we can blame the person or to put the soul responsibility back onto them, but instead to use it as another resource. Another tool to use alongside modern medicine and medications.

Is there a deeper reason to why 80% of all autoimmune diseases are experienced by women?

If repressing our emotions and trauma can literally cause disease, imagine if we could harness that power for good, reverse it, and use our minds and communities to help heal and protect our bodies.

I can’t help but to think- maybe I would have been slightly less susceptible to my disease, if I hadn’t been conditioned to ignore my own feelings so much, if doctors didn't gaslight me, if we didn’t have to constantly prove our own worth or fighting against society. What would happen if we were listened to and allowed to have a stronger voice, if we didn't have to use precious energy on filtering out so much crap and lies told to us on a near daily basis from those all around us.

If I knew then what I know now, maybe I would have fought harder to get my voice heard. Maybe I would have had better self-esteem and demanded more respect from those around me. Maybe I would have protected my peace and sense of safety more.

I know these are all hypothetical and what if’s, but isn’t that yet another filter I’m having to sieve my life through?

It’s too late for me now. I have this autoimmune disease for life. But I write these blogs in the hope that change will happen. That someone else doesn’t have to be in pain for decades without anyone listening. To give people the confidence to let their voice be heard.

What really saddens me is that women (and men) are being pitted against each other more than ever now, especially with recent events. But we need a strong knit community to heal one another. To lead by example. We can't do it in isolation.

Instead, we’re conditioned to compete, to be jealous, to bitch and gossip and bully one another. To believe the lies that are being spread. That’s exactly what they want. We can’t become equals if we are divided. We can’t become equals if we live in fear. We can’t become equals if we are too ill and dependent.

It can feel hard to stick up for yourself, but there is safety in numbers. We need to band together, be in sync with one another, not tear each other down, because you never know who may be looking to you as a role model right now.

A scared and confused little girl who has lost her mum, may be looking at you to answer the question ‘what does it mean to be a woman?’.

What do you want your voice, your body language, your actions and your self-worth to say to them in return? What do you wish someone would have said to you when you were little? How would you shape your mind and self-esteem if you could go back and do it all over again? What do you want to say to yourself, and those around you, right now?

I know what I would say…

Be proud to be a woman. Take up space. Let your voice be heard. Don't let go of your kindness and empathy- this is a superpower, not a weakness. Stop apologising and feeling guilty. It's not lazy or selfish to look after yourself and your loved ones. Stop hiding and repressing your emotions. Love your body- it holds many miracles and so much wisdom. Anger can be healthy, it can tell you when your boundaries are being crossed. Surround yourself with as many people as possible who make you feel loved and safe, and who encourage you to be the real you. The best way to say ‘F**k you’ to haters, is to go live a good life. Love yourself like your life depends on it, because it does.

Also, say thank you more. Thank you to all the wonderful cheerleaders, both the women and men in your life who have gotten you this far. I know I couldn’t have done it without them. It really does take a whole village.

And if my mum was still here, I really hope she would be proud of the woman I have become.

How about you?

What would you say to younger you?

Leave a comment

See you next week! Lots of love & hugs,

Amanda x

Books about the mind-body connection that I've found helpful:

‘The Body Keeps the Score’, by Bessel van der Kolk

‘When the Body says No: the cost of hidden stress’ and ‘The myth of Normal’, by Gabor Maté

‘Healing Back Pain: The mind-body connection’, by John E. Sarno

‘Introduction to Internal Family Systems’, by Richard C. Schwartz

‘It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand’, by Megan Devine

‘The Wisdom of your Body’ and ‘Practices for Embodied Living: Experiencing the Wisdom of Your Body’, by Hillary L. McBride

‘The Emotion Code: How to Release Trapped Emotions for Abundant Health, Love and Happiness’, by Bradley Nelson.

‘What my Bones know’, by Stephanie Foo

‘My Grandmothers Hands’, by Resmaa Menakem

Hello! I’m back, yey. Sorry for missing last week. How have you all been? It feels like I haven’t written anything in ages, so do bare with me if I’m a little rusty. I felt so rude not replying to people or keeping up with my friends on here, but I have greatly appreciated the get well soon messages :) so thank you!

I have been recovering from a rather nasty cold/flu and had to hunker down. The cold then triggered a massive flare up of my chronic illness and my whole body felt so inflamed. It felt like I had taken a million steps back with my health and I know I just needed to concentrate on feeling better.

Also, my husband and I had booked tickets to go see one of our favourite bands, Sleep Token, at the O2 arena last Friday and we desperately needed to recover from this cold so we could go and enjoy it.

It felt like everything I had learnt over the past year about selfcare and recovery was being tested. The old me would have just tried to work through the cold, to try and be productive still, I would have beaten myself up, got angry and cursed the universe for getting me sick right at the time I needed to be well.

At first I was super frustrated. I really thought I wasn’t going to make it to the concert that we had so been looking forward to for months! I have been working so hard to get my energy levels stable and I was feeling really good mentally before catching the cold.

But I’m learning that life with a chronic illness never goes to plan. There is always a setback of some kind you have to deal with. Sadly, your chronic illness will not give one shit about your plans. Instead you have to be adaptable, you have to be kind to yourself, even when you feel your body is letting you down. That is the exact time you give yourself loads of love, grace and patience instead.

So this time, I threw everything I had at this damn cold and flare up. I ate really healthy, kept hydrated, spent a small fortune on cold remedies and medications, and of course rested, rested, rested. I told myself I am not putting any stress on myself to keep deadlines (with writing), we cancelled all social plans. The house looks like a mess, but I told myself that nothing bad is going to happen if I don’t clean for one week! I just hunkered down in my bed and watched all the Harry Potter and The Lord of the Rings movies. I gave myself complete permission to just ignore the outside world. I barely looked at social media or the news to avoid any unconscious stress. I didn’t even read much, to give my brain time to fully switch off.

So after two weeks of feeling awful, we make it to the concert, phew! I think I will write a whole separate article about going to a concert with a chronic illness because we had to put so many things in place to make sure it went smoothly. But we really did enjoy it and I’m so glad we got to go in the end. I think it felt even more special because it took so much to get there.

The ‘new me’, the one with a chronic illness, is now trying to see each setback as a chance to learn more about myself. A way of assessing what changes need to be made to make my lifestyle more accommodating.

For example, since having this chronic illness, I really try to not book anything too far in advance because I have no idea what my health and energy levels will look like in the future. However, this was a special occasion after all. But making big plans when you have a chronic illness can really put a lot of stress and pressure on you. I have learnt from this experience that I will try to limit making such big plans again in the future. Not until I feel a little more stable with my energy levels at least. Or if I can’t avoid it, then to give myself a couple of weeks before the big event, where I limit my chances of picking up a cold or draining my energy with social events. I also need to give myself sufficient time to recover after the event.

I need to remind myself that I can’t just ‘push through’ things anymore. A simple cold may be ok for others to work through and to get over in a few days, but for me a cold could take me out of action for a month or more. ‘Pushing through’ and putting too much stress or expectations on myself is just not worth the mental and physical repercussions anymore. I am so done with feeling crap. I want to do everything I can to make my life the best it can be, for me and my husband.

Going forwards I want to simplify my life, in the ways I can, to save my energy. That’s just how it has to be from now on. I have to learn to adapt, to put boundaries in place and to not feel guilty or pressured into making a lot of plans. I know this now. I’m slowly learning that the old me, the old way of doing things just isn’t sustainable. I kept trying to fit in with society and how everyone else was doing things, but I know I can’t live like that anymore. It makes me physically unwell and I now have too much respect for myself to keep putting myself through it.

I know this particular stint of burnout and flare up will take a while for me to recover from. The cold still hasn’t fully gone and the stiffness and pain in my spine is particularly painfully this time around. But hopefully, with continued selfcare and rest, I will feel better in time to enjoy Christmas.

And this has also taught me, that Christmas and New Years (and such events like that) will also have to look very different for me going forwards. I have realised that I have been subconsciously dreading Christmas this year. The holidays can be incredibly stressful for people with chronic illness. I think I will also write a sperate article on that and how I plan to get through it this year- any tips from seasoned pros will be very much welcomed!

But overall, I have learnt that no one really prepares you for the amount of change that happens after getting diagnosed with a chronic illness. No one tells you how to overcome repeated setbacks with your health and your life. It can take years of learning how to shed your old way of life, your old thought patterns, your old roles and expectations. It’s like going through a type of metamorphosis. A complete transformation that takes place, but in many stages. Most of those changes won’t even be noticed by others. They won’t even realise the amount of sheer will and determination that is happening underneath the surface. They will never realise how strong you always have to be.

This latest setback feels like a huge shedding of my old ways and learning to live in my new body, my new form. It’s not easy, it can literally be quite painful at times. But I’m also feeling hopeful about the future. I’m putting things in place that feel more sustainable. Changing my lifestyle to a way that feels comfortable and healthy. A life that ultimately feels more authentic. I’m not living for everyone else anymore. It’s a different way of living, but it’s mine.

How about you?

How do you recover from setbacks with your health? How do you get through big events like concerts, or holidays like Christmas? I know that my American readers would have just celebrated Thanksgiving- how did that go? Did you need to put anything in place to help manage your stress and energy levels? Do you put certain boundaries in place? How do you manage the expectations of your family and friends around this time of year, especially when it feels like you’re pushing back on fixed traditions? How do you protect yourself from colds and flu at this time of year? I would love to know in the comments.

Leave a comment

Sending you all healing thoughts. See you next week!

Lots of Love & Hugs,

Amanda x

Share In my bones...

Silly me, I over did it… again! I had a busy weekend and now I’m having another flare up of my arthritis argh. So todays post will be a shorter one.

We visited family over the weekend, where Will and I got to see our new baby nephew for the first time which was really lovely. It takes us a good 6 hour round trip in the car, so there was a lot of travelling involved. We also had yummy hot chocolates and cake in cafés and we went to the cinema to watch Gladiator 2. Which to the outside world wouldn’t seem like much. It would sound like a pretty typical fun weekend for most people. But to someone with inflammatory arthritis and fatigue, this can be a lot on the body.

It still surprises me that even positive experiences can be really draining with a chronic illness. Which can be super frustrating. Who wants to limit how much fun they can have with their own family on the weekend!?

At home I plan my whole day around pacing my energy levels. I feel I have gotten pretty good at balancing my activity versus rest periods when at home now, as I’m getting less and less flares ups over time. I’ve built a good routine. However, it’s a lot easier to do this in my own environment with just my husband and I.

I get so used to doing this and feeling ok when I’m at home, that it gives me a false sense of security. I think that I have more energy and can do more things than I actually can. So when I do eventually go outside and do things, my energy gets drained super quickly. It still catches me off guard. Its a sad reminder of how sick I still am.

I forget how much I protect my body from stressors when I’m at home, which is really hard to do when you go outside; you can’t possibly control everything and everyone else around you. All those small stressors start to compound and build up over the day. They may not seem much on their own, but pile 4 or 5 up in a short space of time and your energy goes bye bye.

And these ‘stressors’ wouldn’t even phase most healthy folk. Stressors to me now are things like: background noise in cafés, underlying pain and pretending you’re not in pain (wearing ‘a mask’), eating sugar, talking, slightly cold temperatures, standing still in one spot for more than 1 minute, sitting. Yes, even sitting is a huge stressor for my body these days, especially sitting for long periods of time (e.g. car journeys/cinema/catching up with family) or sitting on a hard surface (e.g. bench in a café).

I seem to magically forget how painful just plan old sitting can be with ankylosing spondylitis. I don’t even notice anymore how much I need to constantly move, until I can’t. Most people would think that sitting is a form of rest, but for me, it’s the fastest way for my joints to seize up which then leads to pain, which then leads to fatigue. I just don’t think I can physically sit still in the cinema any more, or sit down for a meal at a restaurant, without having to get up multiple times, which can be really disruptive to everyone around you.

So by the end of the day, I ended having a panic attack in the car on the way home, I cried hysterically, ranted at Will at how much my body sucks, my whole body was pulsating and shaking in pain, so much so that I thought I was going to throw up and/or pass out. It felt like acid was coursing through my joints.

When we eventually got home and went to bed, my joints were so sore that I found it hard to sleep, which of course then makes you more fatigued. It will take me a few days, possibly a week to recover. Which seems ridiculous, I know! How could one day of fun do that to you.

I’m afraid that’s the reality of living with a chronic illness at times.

However, I’m not going to let it upset me. I will try to learn from it. Analyse what I could have done differently and try to put those things in place for next time. This weekend has shown me that I still have a lot more work to do.

Things to implement for next time:

1. Continue getting to know what my boundaries are and learning to put these in place. Be honest with myself on how much I can do. Keep telling myself that its not rude or disruptive to take care of yourself. Don’t feel guilty about needing more selfcare, you are dealing with a lot.

2. Get better at communicating with those around me about what I need. I know I can’t always be accommodated, but it’s worth at least asking. People won’t know unless you say. You have become so good at masking, that people may have no clue you’re in so much pain unless you say so!

3. Excuse myself and go take a quiet moment when the noise gets a bit much, to avoid overstimulation. Can you buy yourself some of those noise reducing ear buds?

4. Schedule in more time for stretches and mini walk abouts for my joints

5. Only book 1 or 2 things in a day instead of multiple, even if you are feeling good at the time of planning!

6. But yes sadly, also admitting to myself and to those around me, that sometimes it will mean just having to not go to an event and miss out, especially when my body is just not feeling up to it.

Today I am allowing myself to do very little. I need to rest. I also need to remember that resting for me may look different to what other people do.

Resting my body today will actually mean: meditating to calm my nervous system, frequent gentle stretching, a hot bath, eating healthier, avoiding overstimulation by limiting noise, having minimal conversations and very little decision making, maybe having another cry for emotional regulation. And the biggest one of all, not feeling guilty about any of it, otherwise it’s not really resting at all.

So balancing activity and rest, really is a bit of an art form to master with a chronic illness. It involves a lot of planning, a lot of decisions, compromising, sacrifices, explaining, avoiding, protecting, comforting, mistakes, learning and a whole lot of self reassurance.

I wish it were as easy as just sitting down and putting your feet up!

Sending you all healing thoughts. See you next week, when I hopefully feel a little more rested.

Lots of Love & Hugs,

Amanda x

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It’s currently 4am as I write this. I’m sitting on my rocking chair (yes I have a granny chair), wrapped up in a duvet, drinking a mug of sleepy time tea, and dipping in and out of ‘The Lord of The Rings’ book through blurry tired eyes, trying to make myself sleepy enough to go back to sleep. I’ve been doing this on and off for months now.

Sometimes the not sleeping part doesn’t bother me, it’s more the fact that no one else is up, it can get a bit lonely. Why does it feel like the WHOLE world is asleep and I’m the only one up?

Also, having to be super quiet so you don’t wake everyone else up in the household is such a pain in the bum bum. You have to tiptoe about and make sure you don’t make any noise. I can find this super frustrating, especially when I’m in a lot of pain and just want to sob loudly and feel sorry for myself. So I wrote a silly poem about it to make myself feel better…

Don’t wake the healthy 

Pain strikes 3am
my body like clockwork in its dysfunction.
I creep around in the witching hour
trying not to wake the healthy. 
Each step to the kitchen
electrocutes my spine. 
I stifle the urge to scream,
because we can’t wake the healthy. 
I gulp down water like its medicine
trying to dilute the sickness.
I pick up a book, but it’s too late,
or is it too early for words?
I put on the TV for company,
turning the voices down to a hush, 
as we mustn’t wake the healthy.
I stumble around in near darkness,
wincing at every noise 
my clumsy hands make.
I open the window to cool 
my tear flushed cheeks,
stopping dead as it creaks.
I pause to listen-
I try to make my breath ghost-like,
my anxious heart a quiet drum. 
Did I wake the healthy? 
I hear the resident owl hoot 
and hoot again.
It's call cuts through the silence 
followed by a loud shriek 
that could wake the dead. 
He doesn’t give a fuck 
if he wakes the healthy. 

Since being diagnosed with Ankylosing spondylitis, I’ve found sleep one of the hardest thing to master. It gets to about 3am and my body wakes me up right on cue. It’s usually pain that does it. The thing with anky spon is that a lack of movement makes your joints stiffen which then leads to pain. I feel like the Tinman in the Wizard of Oz, needing my next hit of oil on my joints. ‘Oil my neck!’, I wunna shout out in the night.

For me personally, I mostly get horrendous stiffness around my ribs, neck and lower back. When I take a deep breath I can literally hear my ribs crack and creak (ew) if I don’t stretch regularly.

During the day this is easier to manage as I can stretch and walk around at regular intervals, but obviously at night, when you’re sleeping, you can’t really do that as much. So all the stiffness starts to accumulate until it hits 3am and my body screams at me ‘I’ve had enough, I need to move now, wake up!’. It's not the type of pain you can simply ignore.

At first I would wake up, get out of bed, walk around a bit, stretch, and I could slip back into bed and sleep until morning. At one point, I even prolonged the waking up from 3am, to around 4 or 5am instead, by administering certain protocols before bed (it was like a military operation). For instance, a hot shower or bath, covering myself in ibuprofen gel, taking magnesium tablets, light stretches, meditation, journaling, praying to the sleep gods with a sacrificial offering (ok maybe not the last one, but I thought about it!).

I kept the room dark and cool. We updated our mattress. I put bamboo and cotton sheets on the bed. My partner and I went to bed at the same time each night and woke up at similar times to get into a good routine. I tracked my sleep patterns with my Whoop watch.

I made sure to balance my activity through the day. Too much activity and fatigue would make things worse. But if I did no exercise, the stiffness would make things worse. I made sure to tire out my brain by reading and learning new things, but not too much, or again the fatigue would make it worse.

It was all a fine balancing act.

I did everything I could possibly think of!

And most of the time it worked. I established a really good sleep routine and for almost 2 years it worked pretty well. Not as good as before I got sick of course, but manageable.

However, recently, even with all the above routines, I still can’t sleep. And now it’s not even staying asleep that’s the problem, it’s also getting to sleep in the first place that’s become an issue.

It’s now turned into full blown insomnia. Which sucks.

However, it’s not the first time I’ve had a period of insomnia. That didn’t last for ever, so I have hope that this time it won’t last either. I don’t want to panic or turn to sleep medications just yet.

The last time I had insomnia was over 10 years ago now, when I lived in Canada (a story for another day). Which coincidentally is when I think my first symptoms of anky spon started to rear it’s ugly head (although I didn’t know it at the time). I had painful IBS symptoms, headaches, neck aches, vertigo. I was also terribly homesick with out of control anxiety, pretty sure I had Seasonal Affective Disorder (SAD), and it was also around this time of year (autumn/winter time) which I’ve always struggled with, mood wise, due to the lack of sunshine.

So whilst I don’t suffer from all of those things now, I can see some correlations and patterns.

I know I’m not alone in this. I read that up to 91% of people with ankylosing spondylitis also have issues with their sleep. Mainly due to things like pain and stiffness. However, they did mention that mental health issues can also play a part. People with anky spon are more likely to suffer from things like depression and anxiety- partly due to the physical aspects of having raging inflammation in their body, but also because of the social and mental toll that having a chronic illness can have on a person.

I’ve been feeling a lot better recently regarding my depression and anxiety. I feel more stable. Like there are less violent ups and downs and more of a flattened out wave if that makes sense. More stable than I think I’ve ever felt in my life, despite everything going on with me. I feel I’ve become more resilient. I’ve become less hypervigilant. Less adrenaline spikes. I feel less guilty for taking care of myself now. I like myself more. I let myself feel all the emotions instead of bottling them up like a pressure cooker.

But I was thinking, maybe insomnia is happening right now because all this stored anxiety is finally releasing itself from my body? It just seems a weird coincidence to me that I had a huge ‘Aha’ breakthrough moment in my therapy sessions a month back, and that’s exactly when the insomnia started.

This time the insomnia feels different, it’s almost like a restless energy that needs to come out. Like the human version of the zoomies. I don’t feel anxious or even worried about having the insomnia right now. I don’t have racing thoughts or a thudding heart. I don’t feel pressured to ‘fix it’ like I did last time. Yes, it’s super inconvenient and I wish I didn’t have it. But I feel like it’s just something my body has to do. I don’t even feel that foggy headed the next day after getting so little sleep. Which I know sounds a little ‘woo woo’, but my gut is saying to me, just let it all out, let your body do what it needs to do, don’t worry about it, this phase will pass in due course.

It’s like when your body finally feels safe enough to rest, that’s when your body gets sick or has a flare up. Like when you finally take a holiday break and that’s when you get a cold. Or you have a panic attack after the stressful event, once your adrenaline has reduced. Apparently it’s called the ‘let-down effect’.

I’ve been reading books like ‘The Body Keeps the Score’ by Bessell van der Kolk and ‘The Body says No’ by Gabor Maté, which have been really interesting and talk a lot about the importance of this release of tension stored in the body due to things like unresolved grief.

As well as therapy, I’ve been working a lot recently on letting myself feel all the emotions and tuning in to what my body needs, and most importantly not feeling guilty about it.

I try to pinpoint exactly what I’m feeling, but less about trying to think through it and it’s origin or rationalise it with logic, but more, asking myself where in the body am I feeling this tension, and then working on that part of my body- be it with movement, massage, yoga, meditation, dance, singing, creativity, deep breathing, having a cry etc.

I may look on the outside like I’m an ‘emotional mess’ at times, but actually, letting out my emotions in this productive way has made me so much calmer and steadier. I do understand I can’t let everything out whenever I want, I’m not a hysterical toddler, but there are ways that I can regularly incorporate this tension release and self-awareness in my every day life, in a safe and more ‘productive’ way.

So I think insomnia may be rearing it’s head at this time for me due to physical, mental and emotional reasons. However, I’m trying to take the pressure off myself and not get too stressed about it. I’m going to try and make my body feel as safe and cosy as possible, releasing all that pent up tension that's been stored up for so many decades, in the best ways I know how.

….guilt free.

So for now I’m going to rock away in my rocking chair, read my fiction books, sip away on my hot tea and tell myself it’s all going to be ok, and just hope that after a time it will all balance itself out once again.

Until then, at least I have my little owl friend as company through the lonely and quiet nights…. hoot hoot! I think they live in the old oak tree outside of my kitchen window. He’s loud and proud. What shall I call him/her?

How about you?

Do you have chronic sleep issues with your illness? What has helped? Do you have a particular sleep schedule that helps? Do you take medication for it? Is there anything that makes it worse and we should try to avoid? Has treating your anky spon with biologics/medication helped with the sleep issues? Have you read the books mentioned above? How do you release emotions or tension? What do you do to make yourself feel safe? I would love to know in the comments below.

Leave a comment

Thanks again for stopping by. I’ve just realised that I’ve been writing on Substack now for 6 months!! Wow that time has flown by. I’m super proud of myself for sticking with a regular practice of writing and I’m so happy to have found such a lovely community here. I’ve come across such amazing people and it’s restored my faith in humanity. Whilst the world might seem a crazy and scary place right now, I know deep down that kindness and empathy will win out in the end. So keep being your kind and amazing selves.

Sending healing thoughts to you all. See you next week!

Lots of Love & Hugs,

Amanda x

Share In my bones...

You may have heard the term ‘Ghosting’ before, it seems to be popping up a lot recently with the rise of social media and internet dating. However, I don’t think it’s a new concept at all. I bet everyone has experienced it in some form or another over their lifetime? I certainly have. Especially since being diagnosed with a chronic illness.

So what is ghosting?

I’ve seen it being defined as ‘ending a personal relationship. Suddenly and without explanation withdrawing from all communication’.

And wow, does it hurt.

I recently read an article on The Telegraph called ‘I’m 27 and dying of cancer, but my friends are ‘ghosting’ me in my final days’. The title speaks for itself. The article goes on to say this phenomenon is called ‘cancer ghosting’. The article follows a young man called Josh, who says that his friends stopped replying to his messages the further along he was on his cancer journey.

I had not heard of this exact term before, but it triggered something within me. I was deeply moved by this article and I can’t stop thinking about it. I cried when I first read it. It brought up a lot of emotions, for many different reasons which I will touch upon below.

Emotions it brought up for me:

1. Anger. How could his friends do this to him? How could another human being abandon their friend in their dying days? No matter how uncomfortable death is, there is no excuse for this behaviour. When someone you love is dying, you be there. You have a lifetime to process your feelings, but they don't.

2. Sadness. I find it so upsetting that he spent his last months/days wondering why his friends abandoned him. Instead of finding peace, connection and closure in his dying days, he had to be faced with unanswered questions, feelings of betrayal, and loneliness instead. This breaks my heart.

3. Disgust. The comments section regarding the article on Instagram was truly gross to me. The sheer lack of empathy from some people continues to shock me. There were such comments as ‘His friends probably tried but they were tired of the complaining’, ‘he doesn’t seem like a cheerful person’ and ‘he probably didn’t deal with it gracefully’.

   Why do sick people continually have to invalidate their own emotions/feelings to make other people around them more comfortable? Even on your death bed, society is forcing you to wear a mask, shoving toxic positivity down your throat. It’s sending the dangerous message that you need to hide and repress huge parts of yourself. You literally have to say sorry and feel guilty about dying now too. If you don’t comply, society will reject you. I know I shouldn’t judge humanity by the comments section on social media, but my god does it make me worry about the future sometimes. It can feel like a very dangerous and scary place.

   The truly annoying thing is, these people jumped to conclusions. They pushed the blame. ‘Probably' this, ‘probably’ that. They were projecting all their hate on him because they couldn’t accept their own uncomfortable feelings. If they had read the whole article, it showed what a loving, carefree and funny guy Josh was. But even then, why does he have to be happy and smiley (even in death), to be loved and accepted?

4. Hope. However, there was also an outpouring of love from people wanting to reach out and connect with him. People empathised and had similar experiences with their own cancer journeys and were connecting with one another by sharing their stories. There were other people that were as shocked and mortified as I was that this was happening to him. It gave me hope that humanity hasn’t lost all of its empathy just yet.

5. Confusion. It brought up a lot of unresolved feelings about one of my own experiences of ghosting. Someone I classed as one of my best friends ghosted me a few years back. I am still left wondering what I did that was so wrong, that they felt they didn’t even want to give me an explanation. Did I mean that little to them? It made me question our whole friendship and it’s tainted every experience we ever shared together. Over ten years of memories felt ruined. Was she faking it the whole time? I’m now super paranoid that I’m pushing other people away without realising it. My self-esteem has certainly been knocked because of it. It’s made me constantly question and doubt myself when I try to make new friends or connect with the ones I still have. I hate that it still bothers me so much.

6. Grief. It reminded me of the loneliness and grief I felt when my mum died over 20 years ago due to cancer. Thankfully, many people were there for her in her dying days. However, I feel most people don’t know how to be around someone who is grieving and mourning the loss of someone they love. I often felt like people were avoiding me after my mum died. When I went back to school the kids would sometimes stare and point at me. They didn’t know what to say. They would get uncomfortable if I expressed sadness or tears.

   I understand why kids couldn’t deal with that, no other kid had lost their parent in my year, but it was also the adults around me that didn't know what to do. I was often left alone (emotionally) to deal with these huge uncomfortable feelings by myself at the age of 12 years old. I learnt that expressing certain emotions was acceptable- like happiness, and others- like sadness and anger, were not because it made others uncomfortable. So I held them inside. I truly believe this caused me not only a lot of unnecessary emotional and mental distress, but also a lot of physical problems too. If you don't let your emotions out, the body will find ways of doing it for you.

   This also happens to a lot of people who have a chronic illness. People don’t know what to say to someone who has an incurable condition. They often ask ‘Are you feeling better yet?’. ‘Well no, that’s the point, I will never feel better’ you reply honestly. They shift around uncomfortably, make awkward small talk and run away. So you learn to nod your head and say something like ‘Just plodding on’. ‘Yes, I’m fine thanks’. You learn that expressing your true feelings often leads to rejection, so you hold it all inside, letting the loneliness and disconnect fester within you instead. Sometimes that feels easier to deal with than flat out rejection.

7. Fear. When you have a chronic illness like I do, it makes you feel incredibly vulnerable. You rely more on those closest to you. Both in a practical way, like chores around the house when I’m too fatigued to do them myself, but also in an emotional way. I need people to talk to and to feel loved. I need reassurance that I'm still loveable even when I can't contribute as much. You rely on people to come to you, because you don't always have the strength to leave your own bed/house.

   Reading this article unlocked a fear in me that I hadn’t voiced before- the deep fear of being abandoned. Humans are social creatures. We have evolved to live in communities. We’re not supposed to live life alone. Our bodies are wired to be around people- our hormones and nervous systems are built for connection. When we don’t have this, our bodies interpret this as being in imminent danger. Anxiety takes over. It makes us sick. Because back in the day, being outcast by your group would have meant almost certain death. You can’t survive on your own out there in the cold. Whilst Josh, the man in the article, had his mum and nurses to look after him in his dying days, it made me question, who would show up for me?

   I know deep down that I have people close to me who love me, but I’m sure Josh felt his friends would have shown up for him too, but they didn’t. I feel silly for even saying it, but the doubts start to creep in on those days when you feel more sick and vulnerable. The ‘but what if’s’ start to win.

8. Guilt. I thought to myself, how many times have I intentionally (or unintentionally) avoided someone going through a hard time, because I had no idea how to console them, or because I didn’t know what to say to them. How many times have I felt uncomfortable because I couldn’t take their pain away, so instead of reaching out, I retreated? Which made them feel even worse!

   We’ve all been guilty of this. Yes, there are times we need to protect our own mental health and boundaries, but I’m sure there are many instances where we could have been braver and had those difficult conversations instead.

So why did I continue to read the article?

Wow, that is a lot of emotions from just one article. You might be thinking Why did you continue to read it if it upset you so much?

It would have been really easy for me to just stop reading it and put it away, go about my day as if nothing ever happened, but that was exactly the reason why I continued to read it...

Because it’s too easy these days to turn our backs on uncomfortable emotions and hard conversations. To ignore people. To ‘swipe right or left’ with no explanation. To close our phones and pretend people don't exist. To ignore our own emotions and bury them away, unresolved. It desensitizes us to people's pain.

But nothing ever gets resolved that way.

People are left with confusion and unresolved grief. They will jump to the worst case scenario in their minds and always presume they are the problem. It will eat away at them.

I’ve learnt that if I don’t talk about stuff, it gets trapped in my body. I don’t want to do that to myself any longer.

Maybe if we all started talking about these things (loneliness, death, grief, illness), they wouldn't feel so scary. We wouldn't have to face them alone. Things could move forward, instead of stagnating. Emotions wouldn’t turn to poison in our own bodies.

How I wish it went…

What would've happened if Joshes friends were just radically honest with him instead? Maybe they would've said something like:

‘I’m so sorry you’re going through this Josh. I don’t know what to say to you. I don’t want to say the wrong thing. I’m scared and I’m feeling a bit uncomfortable, as I don’t know how best to help you. I’ve never been around someone who is dying/ ill before and I don’t know how to deal with this’.

And what if Josh was open and honest with them back, and replied with something like:

‘It’s ok. I’m scared too. This is shit. I don’t know how to deal with this either. But you don’t need to do or say anything. Just show up and sit with me. That would be enough’.

How different would his last days be if those honest (and yes hard) conversations took place? He would have felt seen, comforted, supported. His friends could let go of all that tension and guilt. All the responsibility wouldn't have fallen on his mother's shoulders. She would have someone to support her in her grief too. They all would have deepened their relationships and felt a connection like no other. Heart to heart, soul to soul.

So what can we do?

Sometimes words are important, but sometimes just sitting with someone in silence is enough. It’s the showing up that counts. It’s having the right intentions behind your actions. You don’t need to offer solutions. You don’t need to find a cure. You don’t need to find the right words. You can just sit there. Hold a hand. Hug them. Meditate or pray with them. Sit in a contemplative silence. Watch a movie or listen to music together.

Just having someone next to you in tough times is incredibly powerful. You can feel their energy, their warmth, hear their breath- it’s comforting to know another human being is next to you. Their presence shows how much they care. Your nervous system can relax. You feel safe. Suddenly all those scary emotions don't feel as overwhelming anymore.

And isn't that what every human being on this planet ultimately wants to feel….safe?

So people may laugh and throw around the term ‘ghosting’ like it's one big joke, but I think there's a really toxic and frankly quite dangerous element to it all. It's teaching people to ignore certain emotions, teaching them to repress them. Distracting themselves to oblivion. We can’t process emotions if we keep numbing them out.

The culture of ghosting is teaching people to not have the hard conversations that are so desperately needed for closure. It teaches people to not check in with themselves and others. It's teaching society that they can throw people to the side like they’re garbage. Including some of the most vulnerable, like the ill and the disabled, which we saw in the story outlined above.

It makes people feel like outcasts and the only way the body can respond to this is with deep stress to their nervous systems. And we all know the damage that stress does to both our bodies and to society at large.

Overall, I feel it can lead to people losing touch with their humanity, empathy and feelings of safety.

I feel incredibly thankful that I have amazing friends and family around me at this time to help comfort me and to make me feel loved and safe, but I know a lot of people don't have that right now. It really saddens me because it feels like that should be a basic human right, to feel loved and to feel safe. To feel seen.

And the sad thing is, it often wouldn’t take much for that person to feel comforted, it just takes someone in their life to simply show up, that would be enough…

How about you?

Have you ever been ghosted? How did it make you feel? Did you wish that person would have just been honest with you instead, or did you appreciate the lack of confrontation? Was ghosting actually the best way forward for you instead? How did you find closure after being ghosted? I would be really interested to know in the comments below.

Leave a comment

Sending you all healing thoughts. See you next week!

Lots of Love & Hugs,

Amanda x

Share In my bones...

It has been nine months since I was diagnosed with ankylosing spondylitis, and it’s been almost two years since I went to my GP complaining of joint pain in my spine and pelvis. In that time I had to quit my job due to the pain and fatigue it created. I stopped driving. My social life took a nose dive. Most of my hobbies took a back seat and napping took a prominent role in my life. My bed was/is where I spend the majority of my time.

Now you may think ‘Wow, what exactly do you do with your life now? You must be so bored…lonely…depressed’. Which yes, I admit, sometimes I am all of those things, but so is everyone else at one time or another, even with a fancy job and an active social life. But I can honestly say that the last couple of years have also been the most rich and enlightening time of my life. I have been given the gift of time to think. Deeply think. The big scary, looking into the unknown ‘why are we all here’ void. Apart from pain and fatigue, I've had very little distractions from that void of questions. Of course I wish that it wasn’t given to me in the way that is has been, with a big dose of chronic illness on the side, but whether I like to admit it or not, it has given me the time to think and sort through a lot of my mental and emotional baggage.

Now again, you may say to yourself, but isn’t too much time to think a bad thing? Couldn’t that drive a person absolutely bonkers? And I would say truthfully, yes, sometimes, but it doesn’t have to be…not if it’s done in a ‘constructive’ way.

My illness has stripped a lot away from me. When I was first diagnosed I thought my life was over. In some ways it was. I had to say goodbye to the old Amanda. I was suddenly faced with a new Amanda, and for a time we awkwardly stared at each other. She stood at one side of the room and I at the other, and we didn’t even dare glance over. Who was this person? What do I say to her? What do we do now? I didn’t know how to act around her; this new version cries and sleeps a lot, she seems lost and confused with no direction. She doesn’t have a job, status, purpose, money, kids…she doesn’t look well anymore. She doesn’t have all the usual labels, so how am I supposed to know what she is about? How can I tell who she is? How do I relate to her? She’s so raw. She can’t hide her pain anymore. She makes me feel uncomfortable.

You see, when I became ill, I literally didn’t have the energy to wear that mask anymore. You know the one we all put on to make everyone around us more comfortable. The people pleaser mask. The one that holds back what they really want to say. The one that does things to make others happy, in spite of your own wellbeing. The one that gets that job, buys those things, carries out those hobbies, to show the world ‘Look at me, I’m happy, I have my life together, I’m worthy of your love and adoration. Please accept me’. But who are you when you strip away all those societal labels? What’s left behind? What is left at your very core?

At first, my knee-jerk reaction was to think, nothing, fucking nothing, that’s what’s left behind. But I couldn’t have been further from the truth! I just needed the time and perspective, to peel away all those layers underneath the mask, and discover who was there waiting for me.

Is therapy the answer?

For years I had been contemplating going to therapy. I knew that I needed to talk to someone about what I was going through. I was ‘pro’ therapy and believed it could help others, but for some reason I never truly believed it would help me. Could talking about my problems to a stranger really help that much? What could they suggest that I hadn’t already thought of myself? Maybe I was beyond help. What if they couldn’t help me and that was my last resort, who or what would I turn to after that? That was a scary thought.

However, I’m so glad that I took that courageous leap of faith (because it is really courageous by the way). Therapy has opened up my eyes to a lot of things in the last few months. It’s given me the space to not only think and talk about the dreaded ‘void’, but to then constructively deconstruct it in a manageable way, problem solve through it and start to come out the other side. My therapist doesn’t tell me what to think, she has guided me to come to those conclusions all by myself. The answers have been there all along, I just needed a gentle nudge to get there. Therapy is great because it doesn’t just give you one nudge and throw you off into the deep end, it nudges you again and again until you can do it by yourself with ease. It gives you accountability to keep doing the hard inner work that is so desperately needed.

Therapy is like a deep clean…

I’ve been thinking of it in terms of a weird analogy. Do bear with me…

So you know when you have that sudden urge to spring clean your home, say your kitchen. You feel like you want a fresh start and you want to make things more minimal and manageable. So you pull everything out of the cupboards at once, lay it all over the floor, start sorting things into piles; this pile is to throw away, this one is to keep, this one to donate etc. Deep thinking about life is like that. When you start bringing everything out of the cupboards and look at it all, it looks like a complete crazy mess. It feels overwhelming. You start thinking oh my god, where did all this crap come from. How did I accumulate so much of this stuff. Where do I put it all. What am I going to do with it. Why did I start doing this at 11 o’clock at night on a Wednesday. There is no way I can put it all back neatly. I’m running out of time ahhhhh, and we start to spiral.

Now the sensible thing to do would be to take a deep breath, start with one object and think, where did this come from? Do I need this? You chip away slowly. You take your time and just keep going until it’s done. You would take breaks when you need to. You realise you can ask for help if you need to. You can get equipment or tools to make the job easier, like boxes, a label maker, a skip etc. But the main thing is, and the most important part is, that you keep going no matter what. You push past the uncomfortable mess and come out the other side, even if it takes you years, you keep going. A task done slowly is better than a task unfinished.

Eventually, you get the task done and you feel lighter, happier, the kitchen looks great, you’re proud of yourself, you invite others around to bask in your glory. You have marvellous dinner parties in your new kitchen and your friends get so inspired they go home and do the same thing. People see how happy you are and just want to be around you and spend time in your new kitchen. Before you know it, everyone you know has beautiful kitchens too. You’ve helped your loved ones reach their potential as well. You suddenly have all this free time on your hands because you’re not bogged down with all that clutter and guilt and stress. You have the room to try new things and your life becomes expansive instead of claustrophobic. How healthy and productive does that sound?

But often what we do instead is panic and either just start shoving all the crap back into the cupboards haphazardly, even worse than it was before, and some stuff breaks or gets lost. Sometimes we panic so much, that we leave it there, this giant pile of crap in the middle of the room. We’re paralyzed with fear. So we try to live around the crazy mess. At first we think we’re doing a good job of ignoring it, but it starts to eat away at us. Which of course starts to make us feel guilty and stressed. We start trying to shove the crap onto others. Here you take it! You get jealous of other people’s clean kitchens, even though they secretly have messy cupboards too. Resentment builds. How dare they have what I want. You can’t even use any of the stuff you have anymore because now you can’t find it properly. You stop inviting people over because you’re embarrassed, you don’t even want to talk about it because it stresses you out so much. People around you start feeling uncomfortable and don’t want to talk to you about their kitchens because it just gets weird and awkward. Your messy kitchen reminds them of all the clutter they haven’t dealt with also. So they pull away and avoid you. Eventually you try to avoid that room completely. You are so fearful of going in the kitchen and being reminded of all the crap you haven’t sorted out, so it just sits there. Years pass and nothing gets resolved. All that potential has been wasted. All those dinner parties that haven’t happened. All those friends and family you pushed away. All those years spent worrying about it, and all that energy used ruminating on it, could have been used to face your fears instead.

Bloody hell I’m exhausted just thinking about it, but that's what we do in our own minds with our unresolved problems all the time.

But that’s where therapy comes in. Therapy allows me to empty all my kitchen cupboards i.e mental clutter. It allows me to deeply think about all the crap in my past, my life now, and my future. Lay it all out there.

But then my therapist is like Marie Kondo. She helps me to organise my mental and emotional clutter (instead of my kitchen cupboards). She guides me to look at each memory or thought, one at a time, and work through it at my own pace. Whilst I do this, she offers me gentle reassurance at every step. Instead of asking me ‘Does this item bring you joy?’, she asks me ‘Is this thought helpful?’, ‘Is this pattern of behaviour serving you?’, ‘Is there a different way of thinking about this situation?’.

Then we take a break and come back to decluttering my thoughts the next week, and the week after that. It doesn’t seem so overwhelming anymore. The stuff in the kitchen cupboards wasn’t the issue. We all have stuff. It was the not dealing with it that was the problem. I was putting too much pressure on myself to get it all sorted out in one sitting, so much so that I avoided it altogether and it never got resolved. I didn’t ask for help. I pushed my unresolved stuff onto those around me at times. I would start thinking about stuff at unproductive times, setting myself up to fail. I now know I wasn’t facing my problems. I just left all the baggage there, distracting myself with other things- boyfriends, moving abroad, jobs, chasing unfulfilling careers and buying stuff, blaming others and just hoping the other stuff would magically get resolved. This lead to me pushing away the people closest to me. I didn’t want them to see the real me, I was afraid I would disappoint them, but ironically I was doing that anyway because I wasn’t owning up to my problems.

Hello me…where have you been?

But what’s more sad is that I pushed my authentic self away at the same time. I was wasting my own potential. I was the one getting in the way of myself. Instead of feeling guilty about it, therapy has given me the tools to deal with the problem in a loving, productive, non-judgemental way. I am learning to take reasonability for the role I had in it all. It’s ok that I was stuck in that blame cycle for a while, that’s only human. But I have to acknowledge that by blaming everyone and everything else for my problems, playing the victim, meant that 1) I was taking away my power and control over the situation and 2) I was sitting in my ‘kitchen (emotional) clutter’ and letting it completely take over my life.

Now I’m not saying I was the reason for all the heartbreak in my life. There are some things that were not my fault at all, but I’m learning that it was probably due to other people not owning their own crap that caused those problems. If we all took more responsibility over our own actions and healing, we wouldn’t project onto others and the world would be a much healthier place. We have the power to break the vicious cycle.

I am definitely not saying that I caused my own chronic illness, or other people do, of course not! But becoming ill has certainly been a huge catalyst in making me face my problems. If I didn’t become sick, I think I would have continued to distract myself, spiral and be buried under the weight of it all for many many more years.

My kitchen cupboards i.e my mind, are nowhere near clear and tidy just yet, I don’t think they ever can be 100%, but I can see that I am making huge progress with the help of therapy. I do think people could get to these same conclusions that I have without therapy, but for me, therapy has made it easier to get there. It’s made the journey to ‘enlightenment’ quicker, less scary and tailor-made to me.

This time to really think and being supported to do that in therapy, has been a way of bridging the gap between old Amanda and the new. I can look at the new Amanda now without disgust. We’re edging closer to one another. She doesn’t scare me so much anymore. I actually quite like her a lot of the time now. I can see qualities in her that I missed first time around. I now know, that I judged her way too harshly. Under all those societal labels, fake masks and insecurities, is actually where all the good qualities lay. They were hiding before. Now I can see all those qualities, the ones that really matter. Like empathy, kindness, loyalty, open mindedness, resilience, creativity, curiosity, wanting to be helpful and a deep love of learning. Society at large may not reward these qualities, or at least they rate them below money, status and power in the modern world. But trust me, they are the real gold. The people in your life, the ones that really matter, will see those qualities and love you dearly for them. You should love them dearly about yourself too, because you are amazing 😍

Can love really heal us?

When I asked my husband the other day what he loved about me and why he fell in love with me (I was feeling needy ok!) he said ‘I love you because of your capacity to love and care deeply, your kindness and your empathy. I fell in love with your heart’.

Before, I think I subconsciously saw those characteristics about myself in a negative light. I thought they made me ‘too sensitive’, ‘too emotional’, an overthinker, weaker somehow, that people would use those things against me, take advantage of me, or call me weird for showing that side of myself. So I started to hide them away from most people. The full depth of them anyway.

But when Will told me he loved me for exactly those qualities, I realised in that moment, that those things have always been there within me. I didn't need him to tell me that it was ok to let them out. They were just buried under layers of societal expectations, insecurities, fear of rejection, people pleasing, guilt and ego.

And you want to know the really exciting thing I have discovered since becoming sick?

Those beautiful qualities he saw will always be there. They are free, limitless. They don’t rely on something so fragile as money or status, other people's opinions or even health. They will always be there no matter how sick or poor I get. I will always have the capacity to love and to be loved. Ok I don’t have a job, but I will always be able to contribute to those around me, with love. I am still a valuable part of society. Even when people die, our love for that person continues. That’s the legacy we should be striving towards.

My own mother died over 20 years ago. I don’t remember her because of her job or how much money she brought to the household. I remember her because of her heart and her love for us as a family. I remember her hugs. She was so generous with her time, effort, love and energy. I remember her laugh and the way she told us bedtime stories. I remember her gentle and caring nature. I remember her patience when she taught me how to bake cakes. I remember her silliness and how fun it was to dance with her to Spice Girls. I remember how she made me feel. She wasn’t perfect, no one is, but she always tried her best. There was never a doubt in my mind-she loved us with her whole heart and that love has carried me through the most difficult times of my life. She may not have been here in body for the last 20 years, but her love has always been here and always will be. She is still providing. Love can literally transcend time and space. Isn't that pure magic?

So why are we wasting so much time on trying to cultivate all those superficial labels and some ‘empire’, when instead we should be cultivating what we already have inside of us; love, connection, compassion, empathy, being open minded, patience, understanding, being authentic and human, open communicators, the willingness to grow and learn, self expression, creativity, being generous with our time and attention, listening, showing up and trying to do our best in whatever capacity we can. That’s the beauty of it. Even when you are sick and all you can do is lay in your bed, you still have all those amazing qualities inside of you.

Now you might be thinking this all sounds like toxic positivity. I’m sick Amanda, I don't feel much love for myself or those around me. I don't have the energy to do anything right now. But again, that's why loving yourself is so powerful. You can be the authentic you, the one who gets sad and angry, the one who feels like a failure, or guilty or a burden. The one that makes mistakes and doesn't feel enough. But you still deserve love and can give love even with those feelings, that's the point. All you need to do is to show up with all those messy human feelings and you own them. You do your best to identify them and move on eventually, but some days I just tell myself ‘Ok I happen to feel sad today, but I still love myself. I'll just have to be MORE generous with my love today and be MORE gentle with myself, not less’. I think where we all go wrong is truly believing that we're not worthy of love unless we're happy and successful. What utter bollocks. We're human and that means we're going to have all the range of emotions, again and again throughout our lifetime. Forgive yourself for being human. We still deserve our love and compassion.

We’re told money and power and success are in limited supply, so we all compete and fight one another for it. But you know what is overflowing with abundance and always will be? You guessed it, love! I think we all know this deep down, but it's only been recently, with the help of therapy, where this thought has really stuck with me. It feels radical, but it shouldn't be. I know there will be tough days ahead, especially with a chronic illness, but somehow it feels less daunting knowing I will always have the real Amanda by my side through it all. The one that can always give and receive love.

And finally, the really beautiful thing is, that love is contagious. Once you start loving yourself, others around you start to feel inspired to love themselves better too. Everybody wins. No fighting for ‘success’ scraps anymore.

So let's redefine what success really looks like, together!

If you are someone who is sick right now and are worried about not being able to contribute, and you think writing on Substack doesn’t mean much, or pursuing your creative passions is not worthy of your time and energy, then I would like to try and convince you that it does matter, more than you may realise. If the soul purpose to be on this planet is actually to love and to be authentic and to express yourself, doesn’t that mean that being creative, in whatever form and capacity that best suits your unique self-expression, is actually one of the best things you can do for yourself and your community? Being creative is a way of letting out those suppressed emotions in a healthy and productive way, that's why it feels so good 😊 Of course we can’t all quit our jobs, we still have bills to pay! But we can carve out some time for ourselves, in whatever capacity we can, and not feel so damn guilty about it.

If you think doing the ‘inner work’ is a waste of time or wouldn’t be right for you, can I convince you to give it a try in a way that suits you? If self-actualisation is the way to reach your full potential in this world, isn’t ‘working on yourself’ one of the best forms of kindness you can show yourself and your loved ones? I know therapy isn't always accessible, but there are plenty of other ways too. For example, therapy books and workbooks written by certified professionals. You can develop more self awareness with practices like YouTube meditations. Can you find someone you trust and speak to them about your feelings? Can you research healthy boundaries and how to out these in place?. These can all be a great starting point. The importing thing though is to keep doing it, it's not a one time thing, it may take years or a lifetime, but it's the most worthwhile thing you could ever do.

Conclusion

Overall, I've realised that to accept my chronic illness and to be able to move on with my life, I need to accept myself as I am first, and that means all of me, including the parts I don't particularly like, including the illness. It doesn't mean I'm excusing bad behaviour, I'm owning that shit and taking responsibility. I'm forgiving others for their part in it too, as they are also only human. I'm moving on, instead of getting stuck. The more I share how I'm feeling with those around me, with honesty and openness, the closer it brings us together. It also signals to them that they can trust me with their big feelings too. A healthy cycle of vulnerability and healing can begin. I know it's scary, but isn't the alternative (being stuck and alone in your troubles) even more terrifying? The trauma that happened to you isn't the only issue, it's the wound that it developed INSIDE of you, the festering wound that's not being healed, which is also part of the problem and continuing the trauma.

So recently when those doubts creep in and I think to myself, what should I do with my life now that I’m too sick to work, or to have kids, or to do all those hobbies I did before.

Firstly, I take a deep breath and let out a deep sigh of relief.

‘Don’t worry ’, I tell myself, ‘the real work is only just beginning ’…

What about you?

Have you ever tried therapy? Has it been beneficial to you? Is it something you would like to try? Has there been any reasons as to why you haven’t tried it- accessibility, money, the wrong type of therapy being offered, waiting lists? I would love to know in the comments.

Leave a comment

Sending you all healing thoughts. See you next week!

Lots of Love and hugs,

Amanda x

As promised, this week I share with you snippets from my diary, of my time travelling around Scotland with my husband in our trusty VW campervan.

You can catch up on lasts weeks article below, which talks about why I choose a campervan as my preferred way to travel these days with a chronic illness.

I’ve been to Scotland a few times now; one trip involved visiting Edinburgh with close friends, another trip we did the North Coast 500 route (NC500), but this time we mainly focused on the Cairngorms National Park, with a few mini stops to Fort William, a spectacular drive through Glencoe and a day trip to the Ilse of Skye.

Here are some snippets from my diary from my autumn trip. Warning though, it is a long post and it may be cut short in your emails, but you should be able to read the whole post in the app or the Substack website!! I hope you enjoy :)

Monday

I always get a little apprehensive before a trip. I worry that my symptoms will flare up and the trip will get ruined in some way. Thankfully Will is very supportive and manages to put my mind at ease. We are trying to go with the flow more and enjoy what we can, no matter what happens.

We pack up the campervan and set off late in the evening to avoid the traffic. The roads are wet and flooded in areas, but it hasn’t dampened our spirits. We put on our road trip playlist and I start to get excited for the week ahead. I love road trips. I love the freedom of them and all the possibilities that an open road lays out in front of you. It feels so refreshing to break the cycle of routine and mundanity of laying in my bed, day after day, due to the illness. Hope starts to stir.

A layer of mist covers the surface of the roads and we start to see more and more sheep in the fields as we drive further North. We arrive at our halfway point at Tebay services near the Lake District. It’s midnight, we’re tired and my joints are starting to stiffen, so we decide to sleep overnight at their campsite nestled in the woods. We set up our bed in the campervan and get cosy for the night. Before I go to sleep, I peek out from the blinds and I see rabbits line the hedgerows, their little noses twitching as they eat, and I hear an owl hoot away in the distance. The leaves gently rustle above our heads and a tree branch creaks in the wind. I love all the comforting sounds of nature around us. My nervous system starts to calm and I slip into a deep and restful sleep, all warm and cosy in my burrow.

Tuesday

We wake up early and make our way North to Scotland. As we reach the border we see people pulling over at the side of the road to take selfies. The Scottish flag big and proud greets us as we both turn to each other and smile. ‘We’ve made it!’.

The landscape is so different to where we have come from in the East of England. I look around in awe and wonderment. Here the scenery is like a beautiful patchwork quilt of different textures and colours. Autumn has well and truly begun and my eyes enjoy taking in all the rich colours. The trees put on a sublime display with leaves taking on a mixture of deep burgundy, burnt orange and bright yellows. When the sun shines upon them, they glow and radiate like embers from a fire. The juicy red rosehips and berries glisten in the hedgerows.

My eyes continue to scan the countryside and I can see tufts of tussocks poking up. The heather has started to turn from a deep purple to brown in places. Belted Galloway cows munch away in the lime green fields.

Craggy hills and mountains start to rise up. The sun casting huge cloud shadows on the rolling landscape. I love it up here. For a moment I feel absolute peace. There is no pain or anxiety in my body. I can finally take a deep breath and relax. The holiday has officially begun...

We make our way into the Cairngorms National Park. The roads become narrower, single track in places, but there are plenty of laybys to soak in all the amazing scenery. Our campervan starts to rev as we drive higher into the mountains, 12% inclines & declines in certain places. Our ears pop with the altitude changes. I spot a herd of deer in the distance and a stag looks up in our direction, he doesn’t take his eyes off us, his antlers point proudly towards the bright blue skies.

We pull over at the Glenshee ski slope resort for a quick stretch and coffee in their café. It’s not busy now, but come wintertime it will be transformed into a snowy paradise, full of adrenaline junkies skiing down the slopes. The air is so cold and fresh up here. I stand and take in the views while filling my lungs with the mountain air. I feel like I can take a full deep breathe here. The air reaches parts of my lungs that it can’t quite touch when I’m back home in my traffic filled town. The mountains in the distance take on a smoky blueish hue and I can see a light dusting of snow on the highest peaks.

After our coffee we continue on our way to a National Trust area, The Linn of Dee, which was apparently a favourite picnic spot of Queen Victoria. I can see why, it’s beautiful and tranquil here. We park up in the carpark and notice a sign which says that campervans can stay the night for a small fee of £10, so we decide to do just that. It’s nestled away in the quiet forest and the air smells vibrant with pine. We can hear the soothing sounds of the River Dee nearby, which will help lull us to sleep later on. But first, we decide to put on our walking boots and take a late afternoon stroll on one of the hikes that follows the River Dee as it makes its way through a rocky gorge.

I worry that I won’t be able to complete the whole hike due to my joints and fatigue. I start to feel a little panicked, but Will reassures me again that we can always turn back if we need to. We take it slow and this actually gives us the time to really soak in all the beautiful scenery. We walk past roaring waterfalls, salmon ladders and see red squirrels scampering in the trees. We walk through carpets of soft moss that bounces underfoot. We have to stop every few minutes to take photos of the mesmerising autumn show that the trees have put on. Everything feels worthy of a photograph. It feels like something out of a fairy tale.

It takes us an hour to complete the hike and my hips are starting to sting as I climb back into the campervan. There are a few other campervans that have joined us in the carpark, but its completely quiet. Everyone is respectful of one another and we all close up our blinds for the night as the sun starts to set. It feels comforting to know there are others like us who seek the peace of the forest. Kindred spirits.

We cook some food and then get tucked up in bed, ready for an early start again tomorrow. I love hearing the gentle roar of the river in the background, and once again the lullaby sounds of nature drift me into a deep sleep.

Wednesday

We rise early and watch the sunshine stream through the pine trees as we sip on our coffees. We pack up and take a short drive to our next destination, the village of Braemar. We briefly stopped here on our last visit to Scotland, but we promised ourselves that we would come back to properly explore it, as I completely fell in love with this cosy place. Everyone is so friendly and makes you feel welcome. You can tell there is a strong community spirit here, which instantly makes me feel relaxed and safe. It has cute shops and cafes, including a chocolate shop, patisserie and even it’s own brewery. It has stunning views of the surrounding mountains. It even has a wishing well next to the bridge that overlooks the River Dee, which runs through the centre of the village.

It has a Braemar castle to explore on the edge of the village, and it also has a Highland games centre. I would love to come back next year when the Highland games are taking place at the start of September, as it looks like such a unique experience. The exhibition room has examples of the traditional outfits they wear with kilts, tartan and sporrans (leather/fur pouches) on display.

Braemar also has the cosiest pub called The Fife Arms, where we spent most of the evening having mouth-watering food by the crackling fire. I would recommend trying the haggis, neeps and tatties! We also booked ourselves onto one of their whisky experiences in Bertie’s Bar. Their website describes the atmosphere perfectly as ‘a labyrinth of whisky bottles, arranged like books on shelves, backlit in a lustrous amber liquid casting a seductive glow across the room’. The staff are incredibly knowledgeable and Will was in his element tasting an array of the whiskies they had hand picked for him.

It’s a good thing we have warm full bellies and a glow from the whisky, because the temperature has dropped tonight. We take a walk back to the Braemar campsite on the edge of town, where we had already set up the campervan earlier in the day. The skies are clear and the light pollution is minimal here, so you can see all the twinkling constellations. We take a moment to let our eyes adjust to the nights sky and take it all in. I can see the stars between the stars here, which I can never see back home. I feel so content in this moment, knowing this is exactly where I want to be right now; looking up at the stars with the love of my life by my side. We wrap up extra warm tonight with hot water bottles and thick socks, and we fall asleep with smiles on our faces. It’s been a perfect day. My body is tired, but I’m happy.

Thursday

It’s a cold morning and there is a coating of frost over everything. The campsite has suddenly transformed into a sparkling winter wonderland overnight. It gives me a taste of what the winter must be like up here in the mountains.

We have breakfast at the Bothy café in the village, which has a great selection of gluten free food and pretty views of the River Dee. This café is great for people watching, as it attracts both the locals and the hikers that pass through. I watch a brave man sit outside in the cold, eating his fry-up. I smile as I notice he’s wearing a kilt. The cold doesn’t seem to bother him in the slightest.

After breakfast we take a short drive to Balmoral Castle, the Scottish home of the Royal Family. The inside of the castle is closed at this time of year, but the grounds and gardens are still fun to explore. As we stroll through the gardens a cat pokes its head out of a hedge and lets out a loud meow. It rubs itself along our legs and enjoys a stroke under the chin. I wonder where it came from. Perhaps its a royal cat!

Exploring the grounds didn’t take long, so we decide to do the hike to the Prince Albert cairn, which is a memorial erected by Queen Victoria in 1862.

I’m super proud of myself for completing this walk. The paths were steep and bumpy with tree roots. I had to take it slow and perch on numerous rocks to catch my breath along the way. My knees and hips started to sting half way up and there were many moments I thought I couldn’t continue, but other walkers who passed us said the views at the top were worth it, which made me determined to continue.

Going for walks like this may not mean much to other people, but to me they mean everything. Before I got ill I loved to walk in nature. It was a form of meditation to me. It’s what lit up my soul and gave purpose and meaning to my life. Being in nature is one of the few places that I feel truly whole and able to be myself. Mother nature lets you take off your mask. It doesn’t judge and embraces the real you with open arms.

I’ve had to give up so much in the past few years due to my illness; jobs, certain friendships and dreams, but one thing I refuse to let go of is my love of hiking in nature. I don't care how long it may take me now, or how sore it will make me the next day, I have to do it. I refuse to let that part of me go.

I beam a huge smile as we arrive at the summit. We find a couple of rocks to perch on and we spend ages looking out at the scenery, getting lost in time. You can see for miles up here. The sun shines down on us and warms the skin on my face. It’s so peaceful and still. Time stops. My mind stops racing. My anxiety detaches from my chest and floats off into the ether. Moments like these are what I cling onto in the dark times, they keep me going. This is where I heal.

Friday

We sleep in late to recover from the epic walk we did yesterday. My hips and back are a little sore, but not as bad as I thought they would be, which is a nice bonus. We drink coffee in bed and enjoy the slower pace of the morning.

It’s our last day at the Braemar campsite and at midday we set off to continue on our adventures. We have a whisky tour booked at The Glenlivet distillery in Ballindalloch. The distillery is practically in the middle of nowhere, but the Speyside area is perfect for making whisky. The distillery was immaculate but very cosy.

I enjoyed sampling a few of the whiskies at the end. I’m not usually a big drinker, due to the autoimmune disease, but it felt rude not to have a ‘wee dram’!

I learnt that I like whisky that’s been matured in a sherry cask, as it has spicy ‘Christmas’ flavours, with honey and dried fruits, yum. They even gave us a free glass to celebrate their 200 year anniversary which was a nice touch. Will couldn’t drink as he was driving, but they gave us small bottles to take the samples away with us. The Scots take great pride in their whisky and I can see why. It was fun to learn about the history of the area and how they still use locally sourced ingredients.

After the tour, we continued on to our stop for the night which was at the Glen Nevis campsite near Fort William. Fireweeds line the roads, their orange feathery leaves look like flames in the autumn months and burn bright in the evening sun.

We arrive at the campsite as the sun starts to set, but we can still see the outline of the Ben Nevis mountain in the background. If my body was in a better state, I would have wanted to hike some of the mountain the next day. However, I have to listen to my body and know where it’s new limits are. I feel myself starting to get a little upset and let down by my body, but Scotland has a way of snapping you out of your sadness. I hear several loud bellows cutting through the darkness. It’s rutting season here in Scotland and the red deer stags are filling the air with intense noise and excitement. I can’t help but laugh and wonder how we are going to sleep through all this ruckus.

Saturday

We set off early to the Ilse of Skye. The journey there is breath-taking. We drive on the winding roads up and through the mighty mountains and pass crystal clear lochs. Buzzards soar and ride the air currents above us. I watch waterfalls cascade down the mountain slopes, running under the roads as we drive over stone bridges. I love spotting all the abounded ruins nestled in the hillsides and seeing the smoke rise up from the chimneys of the cosy cottages. I daydream about who lives in these houses in the middle of nowhere and I imagine living in such delicious seclusion.

We drive over Syke bridge and I’m surprised at how busy it is. It feels like such a contrast to the roads we have just been on. Suddenly there are traffic jams and honking car horns, people spilling from the pavements onto the roads. I start to feel my anxiety rise up in my stomach. We stop at the cute town of Portree and take a wander around, but I can feel my heart starting to beat in my chest and my joints feel sore.

I can see the appeal of the place with it’s cute shops and colourful houses, but these days, busy towns are not what my mind and body need. I crave the open wild expanse, deep quiet and stillness. I need time to move slowly, letting my joints warm up at their own pace. I feel I don’t belong in the rushed chaos where others seem to thrive.

We decide we should move on to a few of the nature highlights instead, like the Man of Storr and the Fairy pools. But even there, the carparks are rammed and the paths are full of people. I can feel myself getting frustrated and overwhelmed before we even leave the safety of our campervan. We stop at Lealt Waterfall instead, which is amazing, but I feel rushed and my legs are too stiff and slow to keep up with the pace of everyone else. I want time to be able to daydream and look out at the sea and watch the ravens dance on the wind, but people are pushing past and it jolts me back to reality. It’s such a shame because I can see the beauty of the place. The misty mountains are haunting and atmospheric. It’s unlike anywhere I have ever been before, but I can’t get lost in it in the way I want to. There is too much human movement and noise to allow my mind to ease and fully appreciate it all.

We decide to call it quits and start to make our way back out of Skye. Before I would have beaten myself up about it, but now we are more understanding of my limits. Thankfully Will is also a huge introvert and craves the same quiet that I do. We would rather drive through the mountains and stop in a quiet layby appreciating the views in a contemplative silence, then get tangled up with the other tourists. They scramble to take the ‘Instagram worthy’ photo and I sometimes feel they forget to really appreciate what’s right in front of them with their eyes, not through a lens. One thing this illness is teaching me, is to live in the present moment, and I am grateful for that lesson.

We do manage to see a Highland cow (Coo) though before we leave and I actually got to stroke it’s thick fur which made me deeply happy. But once again, my experience was cut short by a small queue of people waiting beside me to do the same thing. They brush past my arms and I can feel the energy of other people starting to drain my own. I’m looking forward to getting back to the tranquillity of the mountains.

Sunday

Today is our last day in Scotland. My body is starting to get fatigued and sore from travelling, so I know its time to head home, but I can’t help but feel sad that the trip is coming to an end. The thought of going back to the prison of my bed fills me with dread.

We decide to travel back down via Glencoe, as everyone says how absolutely astounding the scenery is around there, and we were not disappointed. There are points where I audibly gasp at its beauty. I tried to take several photos, but it came nowhere close to capturing the dramatic views. Instead I decided to sit back and just enjoy watching it from the window, hoping my memory will do it justice.

I read that the Glencoe mountain range is ‘built from some of the oldest sedimentary and volcanic strata in the world. They were subsequently moulded, sheared and repositioned by a geological event known as a ‘cauldron subsidence’ which took place 380 million years ago’.

I feel small and insignificant amongst these tall mountains, but in the most humble and inspiring way. I look up at the mountains and can see all its veins, with scree and waterfalls coursing through them. Although its made up of rock, its feels like a living breathing entity.

My problems seem to melt away here. These mountains have stood for millions of years and will be here long after I have gone. It makes my perspective shift and that’s what I love about being out in nature. It gives you that much needed kick up the arse. It reminds you to appreciate what you do have right in front of you, and to enjoy the precious moments you have on this planet. I lean over to Will and squeeze his hand in mine. I couldn’t imagine anyone else I’d rather share this moment with.

The indifference of the cows in the field next to us makes me laugh. They don’t care at all about the stunning views which surround them. People travel thousands of miles to view this scenery every year, but all the cows care about is the next bit of grass to chew on. I wonder if they realise how lucky they really are. I guess we all need that reminder sometimes…

The post holiday blues hit me hard this time around. Probably a mixture of hormones and the days becoming shorter. My anxiety and depression reared up and it took me some time to feel like myself again. It felt like such a shock to my system to go from such beauty and connection with Will up in Scotland, to going back to the isolation of my flat, without anyone to talk to when he’s at work.

It showed me how important getting out in nature is for my wellbeing. I’ve made a promise to myself to get out more this winter, even if that means a quick walk around my neighbourhood in the rain and cold. My motto this year has been something is better than nothing, which I will apply to this also.

Bring on the next adventure!

How about you?

Do you get post-holiday blues? Have you been to Scotland? If so, which parts did you enjoy? Do you prefer a city break holiday, or do you lean more towards nature ones? Do you find this preference has changed since becoming ill? Did you enjoy this travel blog? If so, I'm tempted to do more in the future as I find them so fun to write. I would love to know in the comments below.

Leave a comment

See you next week! Lots of Love & Hugs.

Amanda x

One of my favourite things to do is to explore new places and to go on adventures.

Travel has always satisfied this need to explore. I love it all. Trying out new foods, learning about the history and culture of a place, absorbing all the amazing scenery around me. I’ve been incredibly lucky in my lifetime and managed to travel to all corners of the globe. I’ve been to Europe, Japan, Australia, America and even lived in the Canadian Arctic for a time!

However, when I got diagnosed with Ankylosing spondylitis (AS), I thought those days would be over, or at least become incredibly difficult. I worried that the disease would steal yet another part of myself.

However, over this past year, since my diagnosis in January, I’ve made it my goal to continue to prioritise exploring, so I can still satisfy my travel bug. I find it’s great for my mental health, it keeps life interesting, you learn new things, and it also pushes me out of my comfort zone, in a good way.

I’m going to be honest with you all, I often find travel quite overwhelming and anxious making at times. Life with an autoimmune disease can be tough, that’s no secret. There are some days where I am too exhausted to leave my bed, let alone leave my house. So why do it to yourself , you may ask?

For me personally, there was a time right before I got diagnosed where even the thought of leaving my house was a terrifying prospect to me. My thoughts would race. I would convince myself that I would have a massive flare up of my symptoms and fall gravely ill. I thought that people wouldn't help me and that I wouldn't be able to get back to the safety of my home in time. How would I describe to them what was wrong when at the time I didn't even know myself what was happening in my body? I would get so worked up over these thoughts that I would have panic attacks before I even set foot outside. I let the fear take over. It stopped me from enjoying life and completely stole my independence and confidence. I don’t think those closest to me knew the extent of it. I held such shame over how much I let it take control, that I didn't tell anyone, other than my husband.

I am still working very hard to gain back all that I have lost over the past few years, but for me, travel is a way for me to do that in a safe but fun way.

To me, travel is not just a nice vacation time. It’s a way for me to grab life back again. It provides me with a healthy challenge; to prove to myself that I can still do hard things even when they are a bit scary and physically tough on my body. It lets me escape the mundane. It gives me a break from the isolation. It reminds me that there's a big beautiful world out there beyond my bed. Overall, it’s a way of me saying a big ‘F**k You’ to fear. I’m not going to let you win this time.

Why a campervan?

My husband and I were in the position to be able to buy a VW campervan last year with some inheritance money. We thought long and hard what to do with that money. Should we do the sensible thing and pay off some of our mortgage, or should we squirrel it away for that rainy day? But in the end we thought, you know what, today IS that rainy day. Life is too short and we should enjoy things now. I have no idea what my health will look like in the future.

Together we’ve had too many reminders of the fragility of life, with several of our family members sadly not reaching retirement age due to illness. So together we decided ‘Why wait to live out our dreams, let’s go on some adventures now’. We turned the incredibly sad loss of Will losing his mother, into something special. We bought our beautiful VW campervan and named her ‘Carol the California’ as a tribute to his late mother who left us this generous gift. I think she would be so happy to know we're celebrating her adventurous spirit in such a way. Here's to you Carol 💓 We feel she blesses each one of our adventures and keeps us safe.

So far we have explored many parts of the UK, and earlier this year we took her on a ferry to Jersey. She was even part of our wedding, and back in April we spent our honeymoon in the campervan in the idyllic Lake District.

Next year we hope to take her further afield to Europe (if I’m feeling ready), but our latest adventure took us to Scotland (tune in next week for how that turned out!).

For me personally, a campervan is the most perfect way to travel with AS, and below I explain a few of the reasons why:

• We have lots of storage space and everything is within easy reach. I can have all the stuff I need around me to make me comfortable. I don’t have to carry around heavy bags or suitcases. We have these IKEA collapsible storage boxes which are great for extra storage which we shove in the back.

• Heated seats which are glorious when you start to get that lower back ache.

• You essentially have a bed on wheels, so whenever I get a bit fatigued we can pull over and easily set up the bed for a quick rest and nap.

• You can get closer to nature. I love all the fresh air you get whilst camping. My body and mind feel better for it. I get to see things that I would miss being in a hotel, like watching the stars on a clear night, or hearing and seeing all the different types of wildlife.

  

• We bought an extra mattress to go on top of the one that was provided in the campervan, so there is very little pain in my hips and back at night. I’m pretty much guaranteed to have a good nights sleep, which isn’t always a given at hotels in a different bed to your own.

• Our particular campervan has a fridge built in, so we can store plenty of fluids and snacks to keep me hydrated and fed. I can load up on my gluten free and dairy free alternatives, which I may not be able to find when we’re away. It will also be very handy to store my biologic medication in the future which needs to be kept in the fridge.

• We store a Thetford Porta Potti on board in case of emergencies. If you have IBS/ a tiny bladder like me, just knowing it’s there takes so much stress away. We can easily pull over wherever we are, pull down all the blinds and have complete privacy.

• You can keep relatively germ free and socially distant from people if you so choose. For example, Scotland has some amazing park ups and wild camping spots; you literally don’t have to be around another soul if you want to keep away from germs, especially if you are worried about your immunity levels being on biologics etc.

• You have the freedom to be spontaneous and plan around your fatigue levels. Most campsites don’t need booking weeks or months in advance like a lot of hotels or B&B’s do. There is the option to wild camp or stealth camp as they call it, but we mostly stick to campsites so we have access to electrics, water, showers etc. A lot of the campsites we have visited have great accessibility e.g. disabled bathrooms/wet rooms, good pathways to the facilities, lowered sinks for washing up if you’re in a wheelchair etc.

• There is a pull out table inside which I can use as a handy desk. This was my latest set-up catching up on a few Substack comments.

  

• One of the best features of having a campervan i.e a home on wheels, is that when I’m feeling overwhelmed or in need of a rest, we can just close the blinds and shut out the chaos of the world. I can rest up, make a cup of tea, have a little snack and feel refreshed. I don’t have to wait until I get back to a hotel or back home. The comfort of home is always in reach. Which is great for a massive introverted person with an autoimmune disease and major anxiety that often overwhelms her (who me?).

What are the cons?

• Now of course the most obvious one is that not everyone can afford a campervan. I am fully aware we are super privileged in that respect. Travelling in general can be expensive, but you can do it on a budget. There are plenty of companies that rent out campervans. I would highly recommend, at least once in your lifetime, to go on a campervan road trip. It's such fun. There is a whole culture and community around it, other people with campervans wave and smile at you as you pass each other by. It's like being part of a club.

• It can take a lot of preparation, but I find this would be the case whatever form of travel I took. This is getting easier over time though. I make lists and spread out the packing over a week so I don't exhaust myself. A lot of things we keep packed in the van, so all we need to do is pack a few last minute bits and we're off.

• Setting up the beds and moving around in such a tight space can be a bit physically draining at times. The key is just to give yourself plenty of time and mini rest breaks along the way.

• It’s very dependent on the weather. Obviously things are a lot easier in the summertime. When it's cold and rainy outside it can limit what you do, but when the weather is a bit crap, we snuggle up, put our mini projector up and watch a movie to pass the time. Camping is a great way to reset, slow things down and spend some quality time with your loved ones. There is something so cosy about hearing the rain falling outside when you're all wrapped up warm inside.

General tips

• Don't book too many things in one day. Give yourself plenty of time to rest in between activities. We try to keep plans as loose as possible as my energy levels can fluctuate so quickly. Remember travel is not a tick box exercise trying to cram in as much as possible. The aim is to enjoy yourself. At first I would feel so guilty that we couldn’t go and see everything. I had major FOMO. But slowing down and really enjoying one or two things actually made the whole experience so much more relaxing. Isn’t that the whole point of a holiday anyway?

• Plenty of stops to stretch. Sitting in the car for long periods of time can be absolute agony on your joints. Factor in some stops along the way and have a good stretch to ease the pain.

• Stock up on food, water & fuel where you can. Especially in remote areas like in the Scottish Cairngorms or Highlands. You do not want to run out of fuel in the middle of nowhere in the mountains. That would be one cold and windy walk to a petrol station!

• Pick your travel companions wisely. Only go with people who truly understand your needs. Explain to them that you may need to take things super slow and gentle. You don’t want people that make you feel bad or guilty if you need to change plans last minute, or take a nap during the day or when you don’t want to walk aimlessly around the shops all day. You deserve to have a good time too.

I know this is quite niche, but I hope you found it helpful all the same. I guess I wanted to show people that even with a chronic illness you can still travel. It may just have to look a little different to what you did in the past, or what other people do. I wanted to show people that you can still get out there and enjoy yourself. It may take some extra preparation and planning, but I think it’s worth it.

At first I was so worried that my symptoms would flare up and I wouldn’t enjoy myself, or I would let my husband down, or a million other reasons why I couldn’t do it. But eventually, my overall thinking was, if I’m going to feel like shit all the time (which is pretty much guaranteed these days), I may as well feel shit in a place with a great view! If I can’t change my body, then I need to change my way of looking at things. I can’t always wait until I feel better to go and do something now. I may just have to expand my definition of travel and to find a new way of doing it, in a way that suits me.

For me, it took some time to build up the confidence to do it, but it’s improving with each trip I take. Do I sometimes flare up and get sick whilst away? Yes. But we adapt and deal with it. We still manage to have a good time once we take the pressure off. Do we get to see as much as everyone else? Probably not. But my new thinking is, something is better than nothing.

When I get back from a trip I do often feel more tired, but I think the pros outweigh the cons. Sometimes I have to do things which physically exhaust me, but are great for my mental health and spirit. I get so lonely and isolated being stuck inside my home all day and travel has been a great way of breaking that cycle. Now I plan in rest days after we get home to help balance it all out again.

So if you are on the fence about taking a trip, I encourage you to give it a go. You might surprise yourself. Try something small, like a weekend away and build up from there. And then let me know how you get on! I would love to hear your travel stories.

How about you?

Do you find travelling hard with your illness? Have you tried a campervan holiday? Are there any places you would recommend to visit? Or do you have any tips you want to share? I would love to know in the comments.

Oh and feel free to message me if you want further details about campervan travels in particular. I have loads of good tips, lists of campsites (in the UK) and equipment recommendations if you want them. Too many to list here!

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See you next week for part 2 of campervan adventures, where I will share snippets from my diary, and some more photos from my latest Scottish road trip!

Sending you healing thoughts.

Love & hugs,

Amanda x