planning things to a T is both my saviour and my downfall. i like to know where i'm eating and at what time, what the general schedule is and any extra-curricular activities in advance. if i’m unaware of any of these factors, i can start to cycle through millions of variations of how things are going to play out and spoiler, it’s usually bad. planning helps me keep control and composure so i don’t become overwhelmed in the moment, and feel as if i’ve made the wrong decision or that i am solely responsible for everyone’s fun. i realise this isn’t as important to some people, some of my friends are fine to decide in the moment and are happy to settle if their first choice goes awry, but i am not one of these people. i have rehearsed the entire meal in my mind, checked the menu in advance and eliminated any unknown factors because i just can’t operate comfortably on the fly. i know this about myself and that it’s very much a me problem so i tend to take control over plans with friends, my partner or my family. i like things to be nice, i like to feel as if i have spent my money wisely, and i like to carefully curate my experiences so i don’t cry — sue me! i’ve found a method of living that works for me (what i tell myself when i really just can’t ever relax <3), but of course there’s things out of my control that can impact this and reader, i never grow more comfortable with that.

take this weekend for example, it’s my boyfriend and i’s 5 year anniversary. i find holidays, birthdays and special occasions particularly hard because there’s extra pressure on everything being perfect. i will spend weeks researching the best airbnb, the best restaurants, the best everything and place a lot of intensity on the plan all coming together (i nearly always enjoy the planning process more than the actual event itself because the only thing i don’t account for is me being a massive weirdo and i’m really good at it you see, i’m a producer for a reason). this anniversary is a biggie so you best bet i’m pulling out the stops! location: our favourite town, timeframe: 3 day long bank holiday weekend, budget: keep it reasonable, plan: rekindle our love with copious amount of sex (see: this article) and have the most romantic weekend ever even though we fall into this trap every year for it never to succeed… but it’s actually really different this time because i’ve planned it with extra extra special care and there’s no way i will freak out even though i’m particularly sensitive around this holiday because i put loads of pressure on it. what could go wrong?

well, we woke up late with 12 minutes to catch our bus because we didn’t set an alarm. i try to avoid rushing as much as possible because it makes me really panicky, and i find it really hard to calm down once i’ve got myself all worked up. my thoughts become impaired, i can’t think quick enough what i haven’t packed and my boyfriend is even further behind than me. my brain can’t prioritise just to get out the door or calmly re-jiggle our route, instead it starts to consider all scenarios at once… if we miss the bus, we’ll miss the train and if we miss the train, the shop where we were going to buy dinner will be closed, and if we miss the shop i need to plan something else to eat and i’ll have to decide on the fly and then that’s going to impact this, and that’s going to impact that and Neeeeowwwwn… mayday, mayday!

it all becomes too much. i suddenly lose the ability to move past the first step as my emotions consume me, tears are brewing and i can’t make my body work. i start to try to make sense of how this could’ve possibly gone wrong, who’s fault is it. ah! my boyfriend went out for two nights in a row, why did he do that? ouch, that’s put salt in an old wound. why is it my responsibility to organise every aspect of our lives and plan everything? he always does this… enemy located. feeling unsafe, hurt. time is ticking, i am growing more overwhelmed each second. any solution becomes further from my grasp. my brain is haywire with trying to find reason, make new plans and self soothe. it’s all too much and even when i am finally out of the door 5 hours later (because it took that long for me to deal with it), i am still ruminating and unable to move past the events that have transpired.

i think of pierre novellie’s book “why can’t i enjoy things? a comedian’s guide to autism” as i too find i can’t really properly enjoy things. i get close sometimes, but i’m usually found tearing apart the situation/experience during it or afterwards. i should’ve eaten this instead, we should’ve gone there instead, oh if i just did this slight thing differently i would’ve had more fun — it’s exhausting. a mistake causes me to ruin my own fun. i can never “make the most” of something knowing it could’ve been better if i had just done something differently, and i won’t let myself forget this. the entire trip then fell into this vacuum, really i could’ve just wrote off the missed train and “made the most” of the rest of our time there but moving past my feelings feels too performative. i’m tired and depleted, i’m embarrassed and no longer excited, i just feel all encompassingly bad. to top it all off, i get very overwhelmed by touch when i am overwhelmed by my feelings so my ability to be intimate with my partner was then impacted — more upset. oh and when i started to enjoy myself a bit halfway through the second day after crying all morning, i came on my period at a gig without any of my supplies. tell me how a girl is meant to live laugh love in these conditions :P

the weekend comes to a close and we both feel awful, my inability to let things go of course ruined things more than something as feeble as waking up a bit late. i unfortunately can’t turn back time nor can i change one of my main personality traits — i can’t make the most of things, i can’t pretend like i’m enjoying myself and i can’t hide my disappointment when things don’t go as planned. i am trying to accept this fact about myself as in trying to pretend that i am a very chill unbothered girl, i don’t make too much of a point of making it known that things are important to me until it’s too late. i think of a few weeks ago when i tried to organise a dinner with friends but didn’t push for us to leave at the time i knew we should’ve done, and therefore grew silently agitated until we got there and cried in the street because we couldn’t be seated. i should’ve been more vocal with my partner that his social plans beforehand would trigger me from experiences of feeling second best and unimportant. i don’t really understand how people don’t have expectation for things nor do i know how to apply that way of thinking so i don’t become disappointed, but i can be more open about my neurosis and put things in place which would ruin things far less. my boyfriend came up with the idea that we could maybe plan for some fail-safes, have some alternative routes or excursions up our sleeve for if things were to go wrong. i think this is quite a good idea.

in lovely lisa’s format (aka mylongpause) — some glimmers from the weekend. we found a bar on the friday night that wasn’t on our list which had “let’s have a kiki” as the cocktail special which is our song of the summer. we spent a very funny evening in a club people watching and making each other laugh. we had a really wonderful meal at a restaurant we have wanred to go to for ages, had a fab squid sandwich and some delicious orange wine. we discovered two new bands that completely blew us away, and we nattered over a pint in a pub post gig like two music journos. i have since had some sex! bring out the mariachi band. i put too much pressure on dates and events being a certain way and in doing so, forget that i am not a certain way. i am not neurotypical, i am not well and i am certainly not chill. my brain works differently to the expectation of perfection i am holding myself to and i need to be more open, and accepting towards, what is going to make me wobble. i can’t “make the most of it” once the damage is already done, but i can try to make the most out of being me ahead of time.

XOXO gout girl

at the age of 12, i started my first year at secondary school which coincided with being diagnosed with my first chronic illness. i retreated to bed to deal with my chronic fatigue, and started to wish these years away too. i remember my mum telling me i would never get them back, to which i would always reply good. i didn’t want to be poorly and stuck in bed, but i didn’t particularly want to attend school either. i thought that secondary school would be a lot more exciting, but again it all felt horribly structured and boring — a box i could never fit into. i thought that with age, my life would expand and so, i kept waiting for it to do so.

i left school at 15 triumphant, finally i had broken out of the structure i deemed so uncomfortable. the pressures to perform in a certain way, to show up and be somewhere on time daily which all went against my chronically ill body. once i went to college though, i was met with the same humdrum. turning up to class daily, being sat in a room i didn’t want to be in for hours, feeling drained by too much socialisation. it was better in ways since i had chosen a subject of interest to study, but this was when i first felt my lack of agency. if i hadn’t become poorly, i could’ve been on a different path. losing my GCSE subjects to illness meant i lost the variety of different futures and it felt as if my destiny had been decided. before i knew it, i was back in the box again but time moved forward too.

being on the brink of adulthood felt exciting, up until my dad died 3 days before my 18th birthday. i was meant to be going to university that september which i ended up deferring, opting for the comfort of my bed for another year. this event changed the trajectory of my path, in going a year later, i met different friends and acted differently to what i would’ve done the year before. i was reckless, uninterested in any of my lectures and just wanted to party for a year to cope. but in this, i felt that excitement i had been longing for. the excitement to live as an adult, the freedom to do what i want and when i want. things were happening for me, i had finally reached where i was meant to be.

Subscribe now

i have always been wary of those who clung onto their university experience as the best years of their life because i would think to myself, how grim is the future then? surely there’s more to look forward to? but the saying of not knowing you were in the good years until they were gone rings true. i was living with my best friends, not working full time and my weekdays were spent mooching around galleries or running light errands followed by chai lattes. but of course, when i grew incredibly comfortable in these years, i started to long for more. i longed to be further ahead in my career, i longed to move in with my partner, i longed to make more steps towards adulthood, drunk on the possibility of who i was becoming. bang, and the time is gone.

i put my whole life into becoming an adult, and my reward? that familiar feeling of complete dissatisfaction, but worse, with the new addition of time moving so fast i can barely keep up. my boyfriend told me a theory recently that time is slow when you’re a child because every experience is new, and as you age, less things are new so you register them less. if only i had known to have hold onto this when i was younger as for the first time in my life, i am yearning to go back more than i am wanting to go forward.

as i near my 30th birthday, i find i am understanding things that felt too abstract before. i have been thinking on the lcd soundsystem song “all my friends” and this lyric in particular:

you spent the first five years trying to get with the plan / and the next five years trying to be with your friends again

i spent the latter part of my twenties investing in my career, climbing up the ladder to only reach the top and realise that i shouldn’t of rushed — i should’ve lingered. albeit always rebellious, i thought i could beat the monotony of the everyday but it’s caught up with me. is this it? the routine of waking up, going to work, being too tired to do anything afterwards, bed, repeat. eating breakfast on the train, lunch at my desk. living for the weekend, for the weekend only to fly by in a few seconds. having lived with chronic illness for so long, i thought i would get to exist outside of able-bodied expectation, but turns out i must work full time and exhaust myself (even more than the typical person) to live pay cheque to pay cheque, just like everyone else. i miss my friends but they too are caught up in the con of adulthood, the responsibility of employment and endless bills which has caused distance to creep in. we’re all in the same boat of navigating our late 20s but travelling separately down different streams — i now understand the final seasons of girls.

maybe it’s not all doom and gloom though. i heard florence and the machine on the radio a few days ago and she sang:

and it's hard to write about being happy / 'cause the older i get, i find that happiness is an extremely uneventful subject

there's truth to this, things do become less exciting once you become settled. i wrote essays about the beauty of the everyday with ease whilst i was at university so this concept is not totally lost on me, but my nervous system still seems to still register nothing happening (good) as nothing happening (bad). i have been in a stable relationship for 5 years, i am settled into a career and i generally have way less to moan to my friends about via text. i have grown bored of masking which would propel me forward into drinking too much that led to adventures that were guised as exciting, but rather left me feeling shame. when i was once excited by consuming yellow pills, i am now excited by the yellow curtains that fill my flat with artificial sunlight. although my friends and i are in different stages in our lives, i know i can rely on them and i hope that we find our way back to each other. i have ran away from mundanity for as long as i can remember, but in doing so, i could’ve been running away from contentment without realising. i am conscious that in living backwards, yearning for the past and wanting a do-over, i could end up on missing these years that i won’t get back (thanks mum) like i did when i was craving to grow up. i might not be exactly where i want to be in some areas, but only looking forward and back on my life is not doing me any favours — maybe sitting with mundanity for once will surprise me.

XOXO gout girl

but luckily i have met with therapists in my adult life that have been far more helpful than the ones i encountered as a child. my most recent therapist was amazing, she specialised in art therapy and EDMR. i really liked her and our sessions felt like catching up with a friend as she too was a neurodivergent, chronically ill queen. i didn’t really create art during therapy per se, i would usually sit and squish some clay or play with magic sand whilst i was talking and i found it all particularly cathartic. we had just started EDMR sessions when i had to cancel meeting with her, i was really relying on PIP to pay for some of the sessions but of course my application was denied and i simply could not afford £65 per week any more. i hope we are reunited one day… but until then, i have had to explore other options.

my work offers me health insurance which feels oh so american when i live in the UK. i have had this before at other companies but i never really understood it enough to claim anything, i managed to get some free physiotherapy recently from a practitioner who too has become to feel like a friend so it’s been pretty positive of an experience this time around. it was only a matter of time that i would explore other pathways via insurance, i found i could receive a chunk of therapy sessions for £100 which felt like a steal. wary of mentioning any pre-existing mental health conditions that they won’t cover, i applied for the therapy pathway using my most recent diagnosis of fibromyalgia as a guise and claimed to need help to digest this diagnosis… mwahahaha. not completely untrue, but little did they know i planned to unpack a lifetime of trauma in these sessions.

i had my assessment and was referred to a practitioner who specialises in CBT and ACT. i’ve always been a bit wary of CBT due to the homework element but figured i would give it a go anyway with how cheap these sessions would be. i hadn’t come across ACT before, ACT being acceptance and commitment therapy which from my google search seemed interesting as it is often suggested for those with chronic illness. i met with my new therapist last friday and i’m still digesting the session… i am not sure if it was the therapist or the framework itself i disliked, but either way it has left a bad taste in my mouth.

my new therapist is a man, i know that some are more comfortable with seeing a therapist of their own gender but i usually don’t mind too much. i have met with male therapists before and they have been as helpful to me as the women that i have seen. i am not sure if it was just his personality that rubbed me up the wrong way or again, if it’s the actual framework of CBT/ACT, but we first approached my idea of CBT and debunked it using the CBT structure. i think i won’t find CBT useful due to homework, that then becomes reality due to my thought process, blah blah. okay… but when we came to discuss my chronic illness, i was essentially told i could think my way out of my symptoms. hm. if only someone had thought of that before… would anyone be chronically ill?

i started to feel almost protective of my chronic illness as i was told that it had bullied me for the majority of my life. yes, to some extent i guess it has! but i’ve worked really hard on building a harmonious relationship with my conditions, the stress of me rejecting what i am so fundamentally feeds into itself and makes my symptoms worse — they are apart of me and something i can manage rather than get rid of. he explained the vicious cycle and how my thoughts impact my feelings and behaviours. this makes sense in the context of anxiety and depression, but for example if my thoughts are i need to work from home to avoid a crash when i feel tired, worn out and on the verge of a crash and then i behave by working from home to avoid said crash… is this not pacing rather than something that needs to be fixed?

to him i can think my way around my symptoms, challenge them and ultimately force myself into work… but who does that benefit other than my employer? i have learnt to surf the waves of crashes and request reasonable adjustments at workplaces so i can work from home comfortably when i need to because shock horror, i will most likely always need to. this is not me telling myself something that is factually incorrect and is something i can change if i just think differently. this is me living with neurodiversity and chronic illness for long enough to know i get incredibly burnt out from just being in an office, and having the experience of severe meltdowns that have led to being signed off sick in the past. i think what he does not understand is that i do challenge my thinking, i have challenged myself before to get myself into work and push past my feelings only to end up sitting there feeling like it was a complete waste of my energy. i don’t believe i should be using my limited energy to prioritise an hour commute to sit in a room on a dodgy chair where i can’t control the temperature or noise levels cosplaying as someone who is well causing me to crash in my evenings and spare time. i have worked on being kind to myself, on doing my best and aiming for the best balance between work and play i can get. i know that i have an inbuilt safety protection that goes noooope when i wake up that overrides any good intentions i had to get into work which i could maybe work on, but i also know this kicks in to protect me from becoming human soup.

maybe i’m completely missing the beat when it comes to CBT/ACT or maybe i simply just didn’t like him. i had to answer how suicidal i was out of 10 for safeguarding purposes — to which i said 1 out of 10 because i do experience intrusive thoughts but don’t have the energy to act on them — and i found him to be incredibly argumentative in response. i also felt as if i couldn’t get a word in edge ways at times when he explained these CBT concepts and found he spoke for me on more than one occasion. i am going to give it another chance next week as maybe there was a lot to get through on the first session and maybe i can move the focus to something a bit more palatable for the framework like low self esteem as i do feel strangely protective over my chronic illnesses, my burden and my bestie. if anyone has experience with CBT/ACT, please do let me know.

XOXO gout girl

after it takes my face, it takes my mood. i become low looow L O W. i live at the bottom of a well (a fitting place for a sad strange being me thinks) and there is no light at the top of it, no ladder or rescue. i’m the most miserable i’ve ever been and take on the form of a suicidal narcissus absorbed with nothing except my own melancholy. but hang on, i’ve actually always felt this way? it fully infects my brain and convinces me that how i am feeling right this second is my absolute, my be all and end all. things are abysmal and never ever getting better.

but then i catch an infection — rage. my partner becomes my foe, a random man who dare to disturb me in my well and well, i’m not having that… en guarde! i’m intolerant and nasty, i lose my conception of hurting another as red mist clouds my judgement. everything is annoying and at every opportunity i must protect myself. i’ve never wanted to be in this relationship and i’m far better off alone as a strong independent monster thank you very much.

i soon realise i’m not that strong of a mysterious strange being/monster/creature as my body starts to hurt a lot. did someone operate on me in the night and replace all my muscles with sandbags? everything feels heavier and i struggle to get through my days. i’m also t i R E D! why is there no one around to help me? i’m alone and i’m sore and i surely must be reaching the end of my life? then, there’s blood.

what sounds like a horror story is actually my experience of living with pmdd. much like the women who forget their experience of childbirth, i seem to forget that i experience symptoms of pmdd every single month. even when i can see on my period tracking app that i’m due on or when my partner tentatively suggests he thinks it could be incoming (begone foe!), i bat it away like this is the first time this has ever happened. it’s only when my period starts i go ohhhhh… with that first drop of blood, everything lifts. the red mist is replaced with rosy red-tinted glasses. now don’t get me wrong, my first day is pretty heavy and i get some nasty cramps but (most of the time) you could easily catch me doing cartwheels wearing all white. an exorcism has taken place and removed whatever was possessing me, i’m feeling good and sexy now 😎

i love being a woman and find menstruation pretty beautiful, i just wish pmdd didn’t feel the need to bully me. it can consume me for up to two weeks then i bleed for 5 days so that’s more than half the month revolved around my period. once it finishes, i only have one clear week of the month where i’m not impacted by it at all... hasn’t aunt flo got anything better to do than bother me? feeling like my face has changed is likely due to the rise in progesterone and drop in estrogen which literally changes my brain chemistry (wild) and that is probably related to my mood too. but i often feel like i don’t recognise myself. as a neurodivergent #traumatised woman, my mood is constantly up and down. i experience ugly meltdowns which follow a similar patter of not knowing it’s happening when it’s happening. it’s only afterwards i can reflect then i get upset. critical thinking skills? i don’t know her. in all honesty, life is just a minefield for me and it’s not getting any easier with age. if you are reading this and you experience symptoms of pmdd, i sadly do not have any wisdom on how to manage it. i just have to take the good sexy days as they come.

XOXO gout girl

as a product of being so far removed from normal development, any form of interest towards me would cause me to have panic attacks. i’ve literally ran away from people who have kissed me at parties over the years due to my discomfort; my inebriated state and neurodiverse charm often misread as something more. i didn’t sleep around at university, by this point i was covered in heavy scarring across my chest (from operations i don’t think i should’ve been subject to at the age of 17), and i was terrified to ever reveal this to anyone. i have suffered with body issues for the majority of my life, weight gain came with my diagnosis of hashimoto’s and being signed up to schemes like slimming world at age 12 of course caused me to develop heavy body dysmorphia. my naked body has been prodded, inspected and photographed more by random old male consultants i can barely remember the name of than any safe sexual partner. i have a dissociative relationship towards my body due to the safety of my skin being disrupted; i have felt more like a genderless asexual alien who has been dissected than i ever have as a woman comfortable in her sexuality.

around the age of 23, therapised and feeling good, i decided to try the apps for the first time ever. any time i had attempted this prior, i didn’t speak to anyone and deleted it after a week cos it made me so uncomfortable. i met one man, the only man i have ever met from the internet, and he remains to be my long term boyfriend of 5 years. when i started dating him, i realised i did have desire! turns out i was wrong for thinking i was a broken biscuit all this time who did not experience those types of feelings. i credit this due to my partner also having similar lived experience — disabled, operations too young with scars across his body as well — he immediately became a very safe person that i could explore this side of me with. also: hottie! but he had a very normal development with various partners before me whilst i was walking on the moon for the first time. i was excited about discovering this new sensory high, experimenting and trying new things, but his lower libido (i suspect as a product of pain) sparked off my RSD, tapping into all of my fears around intimacy and being rejected. our sex life has subsequently only ever been a site of turbulence that over the years has gone more and more downhill — even safe people can add to our pre-existing trauma without intending to.

i think accounts that navigate successful disabled sexual prowess are almost always reliant on one party being able-bodied. this is NOT to say disabled people do not have rizz! i think of a scene from the tv show we might regret this — a very cool account of disability and dating with drug use, sex and reckless behaviour created by and starring kyla brooke harris — where able-bodied abe says that he is having the best sex of his life with freya who is tetraplegic. i absolutely love this representation, but yearn for anything that is reflective of mine and my partners. he is disabled with problems in his hips, i’m chronically ill with problems in my knees, both of us have widespread pain that is getting progressively worse. i can’t say either of us are having the best sex of our life when we manage to have it these days, neither of us can really take control and am often left disheartened half way through or in a significant amount of pain afterwards. and yes i know there are many many ways to have sex, but we do also live in a society where sex is expected to look a certain way — if you’ve come across a porno where they pop a couple of paracetamol beforehand and struggle their way through while trying to remain aroused, do send over a link. whilst i have tried my hardest to dismantle my beliefs around what it should look like, my partner is less comfortable with accepting his limitations so we end up butting heads. i feel riddled with guilt afterwards when i realise he’s hurting and am left disappointed cos was it even worth it? i have therefore found sex to be less and less pleasurable over the years. my inexperience and fear means i never got to experiment, find out what felt good or try new things (my partner was never particularly interested in these ventures having passed his experimental years and i know he is not entirely responsible for my lack of sexual advancements but this did stunt me a bit) and i am now too entrenched in chronic illness and pain to ever be as explorative as i once was. a lethal cocktail of RSD, upset, grief, disappointment and pain means i have completely reverted — i started having sex at 24 and have pretty much stopped at 28.

i am grieving both backwards and forwards again. i wish certain things hadn’t happened to me at such a young age so i could’ve blossomed. i wish i hadn’t spent most of my life thinking i was grotesque and had navigated awkward, embarrassing young dating and one-night stands so i had thicker skin. i wish i got to explore my queerness and i got the chance to date around before i settled down. i feel like i should’ve had my heart broken by now, my inability to compare my relationship to anything else really makes it difficult for me to navigate. my neurodivergence makes it hard too, let’s be honest sex is weird and i can’t read signals very well… being point blank about it doesn’t seem to enchant my partner very much. i can barely get through watching tv shows these days without getting upset when i see a couple return from a date into each others arms into bed, this is something i have never experienced and probably never will. we use all of our energy to get out the house and our bed is a site of rest rather than anything sexy. his pain is better in the mornings, my pain is better in the evenings — we are never in sync. i made a joke recently that we need to hire someone to shag us both (and also clean around the house, a sex maid perhaps?) since we’re both often sexually frustrated but neither have the capacity (or confidence) to act on it. i grieve that my 20s are nearly over and i never got to be sexually free in my hottest years. i grieve that i know my pains are progressive so i’m past the most pain-free time in my life where i could’ve at least done a load of stuff that i could look back on and say that was fun if i never got the chance to do it again. i know i am always going to be jealous of any experience i hear from a friend over coffee, i know i’m going to live with regret and i know i am never be content as i am never going to have experienced sex in the way i fantasise over.

reader, i’m sure you’re crying out that maybe it’s not over for me. maybe me and my partner are just sexually incompatible, maybe this can all be fixed in couples therapy, maybe i’ll heal all my trauma and have my flirty thirties. to that i say maybe! but i can’t keep holding on hope that everything will one day magically shift, i’ve been doing this for nearly 5 years already. there will never come a day where either of us are entirely pain-free and able to reenact positions straight out of the karma sutra and the hip replacement in my boyfriend’s future might make things more difficult (not to blame, to be realistic). i know that my best sexual years have passed; i don’t see anyone credit getting a mortgage and having children and being in more physical pain as something that spikes sexual desire. i am trying not to dwell on experiences i feel i should’ve had and milestones i should’ve met as the relationship i’m in is many’s big door prize. we love each other very dearly, are best friends and entirely suited in so many aspects. we share a beautiful intimacy and closeness that transcends sex. the only way we will ever move forward is if we put less pressure on sex and stop measuring our relationship against able-bodied counterparts. maybe i am not rich in sexual exploration but i am rich in laughter, love and L**.

XOXO gout girl

**bf name redacted <3

being consumed by chronic illness for years has trained me to expect the worse. the baton of responsibility was passed down from mother to daughter for i was once too young to look after myself. my mother taught me how to advocate for myself and not to put all my trust in doctors, how to read my own results and remain curious towards my body. as an adult i’m ready to argue that my TSH is too high, i’m ready to provide medical professionals with answers to my symptoms through my own vigorous research. i’m ready to tell employers that something in my body is out of whack and i have this piece of paper to prove it! now we know, it’ll be fixed soon and i’ll be back on my feet in no time. can you believe it was just low vitamin d? it feels like knowing myself inside and out is what i was put here to do — a personal paramedic to myself without any formal training, just adrenaline and lived experience. my blood has let me down by telling a different story. it’s grassed me up and said there’s nothing wrong, don’t believe her! i thought we were all in this together, but my blood and my body seem to have had a falling out. being told everything is in range is many’s ideal result met with a big sigh of relief, but for me, it’s the worst news i could receive.

when i learnt at the age of 12 what chronic meant, i made a pact with myself and my broken thyroid that we were in it for life. but now i feel abandoned by my condition, what do you mean you’re doing okay? i’m certainly not, and i thought we couldn’t have one without the other. i imagine my fibromyalgia is to blame. having hidden behind my terrible thyroid results for so many years, i don’t know where one ends and the other begins. i can’t measure that through formal tests though, i’m practically minded and being given a blood test with markers of wrongness feels more reliable than a diagnosis. fibromyalgia is too abstract for me to understand, too intangible for me to grasp. i want to be told that my thyroid is low, i want to be told that an increase in medication will do the trick. i’m so used to hearing this so hope carries me through to the next test, only to be told that my levels have not increased. of course not, that’s why i’m tired. whose body wouldn’t feel like a tonne of bricks with results like that? yes, i too am surprised i got out of bed today with iron that low! i don’t want to be told by an endocrinologist that my results are beautiful, i don’t want to be told there’s no need for me to have further tests. i want my blood to prove that yes there’s something wrong with me because i’m not lying when i say there is.

i have been working towards being healthy for so long — a unobtainable project with a deadline that keeps getting extended — but i don’t know how to be healthy, i only know how to be sick. i only know how to be chronically ill, how to have something wrong with me constantly. to always be fundamentally unhealthy, not to be is lost on me. i know how to advocate for myself with specialists, how to read my own results and research new treatments. i know how to get out of plans last minute, i know how to swing working from home. i know when i need forced rest, how to wrap myself in cotton wool when the week has been too much. i know how to answer the phone when the doctor tells me my blood has shown a diagnosis i’ve had for 16 years, i know how how to brace myself when i’m told to just keep doing what i’m doing after i explain how severe my symptoms are. i have walked such a distance in my chronically ill shoes, the only certain aspect of my life being my diagnosis and i don’t know any other route. i don’t know how to leave the house everyday or hold down a full time job. i don’t know what it’s like to have energy and be full of life, to experience normative time and be in the same timezone as those who attend the gym 3x a week. i feel like a fraud, like i’ve made everything all up. like i’ve fiddled my results for years and have now been caught out. my blood is telling my body i shouldn’t feel the way i do, it’s nudging me to say there’s nothing wrong and i can live like everyone else now but i know that is not the case. i feel ungrateful for this certificate of wellness, but i am not deserving.

i have always yearned for the day i would receive these sparkling blood test results, A+ all round, but i thought i would feel different. i thought my whole life would suddenly change overnight. i thought i would have a spring in my step in the morning, i could suddenly work hard and play hard. being chronically ill would become a distant memory, something that took up half my life but hey i’m over that now. the tattoo on my knee that says ‘sick’ returning to it’s original intention meaning cool rather than a branding for what i know i will always be. i realise that even if i was feeling as good as my bloods suggest, i wouldn’t know what to do with it. i have made my peace this is just how i am, that i will always be intrinsically entwined in sickness. what would i do with all these years of investment in my sick body? how would i unlearn everything i have learnt about myself — my capacity, my flares? how could i let go of being eternally switched on, let go of being incredibly introspective and constantly on the hunt for my next diagnosis? how would i navigate the world without knowing that anything i do throughout the day will ultimately make me worse? my energy a sand timer that rarely gets turned over. how could i accept that with the right treatment, my life could’ve been different? that my childhood, my teens and my 20s could not have been snatched away from me. how do i get to know this new version of myself? one that can have a career, have fun, sleep well. who am i if i am healed? how do i learn to live otherwise? as sick as it sounds, part of me doesn’t want to be well because i’m scared. i’m scared because i don’t know who i am if not sick.

XOXO gout girl

Subscribe now

i could’ve been an artist. i could’ve considered the many shades of blue as i set up my easel amongst a riverbank. i could’ve made a scene come to life just by using my hands. i could’ve experimented with the medium, incorporating different techniques and brush strokes; some learnt, some instinctual. my perspective of the world could’ve become immortalised; my art could’ve been hung proudly on the walls of friends houses, at local cafes, in galleries. maybe i would’ve had an exhibition about me, maybe i would’ve been discovered by future young artists. maybe my paintings could’ve been sold at auction long after my death. maybe i would’ve been considered a trailblazer, an inspiration.

i could’ve been a dancer. i could’ve moved to the beat of my own drum, rhythm could’ve commanded my every move. i could’ve floated into any room, i could’ve got others to dance at weddings. i could’ve danced a multitude of styles. i could’ve mastered ballroom, ballet. maybe i would’ve moved in a way that felt good, maybe i would’ve depicted a tale of trauma without even uttering a word. i could’ve danced alone or with a strong partner, i could’ve won competitions or done it just for fun. i could’ve been front and centre, i could’ve been a backup dancer, i could’ve danced my way around the world.

i could’ve travelled full-time. i could’ve laid my hat in a different city each week, or maybe i would’ve lingered. i could’ve seen the wonders of the world and met characters just as enchanting. i could’ve roughed it in grimy hostels, i could’ve lived it up in flash hotels. i could’ve travelled in a van with a dog for safety. i could’ve planned with precision, i could’ve seen where the wind blows. i could’ve wrote of my experiences, i could’ve been guided by locals like anthony bourdain. i could’ve camped under the stars, the sound of native insects and wind amongst the clifftops could’ve lulled me to sleep. i could’ve learnt a new language, i could’ve eaten something rare, i could’ve broadened my horizons and understanding of the world. i could've taken a train to nowhere and found myself there.

i could’ve been an actor, a performer, a comedian perhaps or rather a jester, a movie star. i could’ve ran lines in my trailer, i could’ve learnt them on the tube. i could’ve learnt how to cry on command, how to take on a new accent, how to project my voice. i could’ve been typecast or i could’ve played someone entirely new. i could’ve performed a one woman play or been part of a stellar cast. i could’ve been a soap star, or a character from history. i could’ve walked in shoes that were not my own with authenticity or parody. i could’ve won awards, i could’ve done community theatre solely. i could’ve been method or i could’ve been natural. i could’ve lost my sense of self, embodying another, for a short while. i could’ve performed at the fringe, on tv, at my local pub. i could’ve drawn from my experiences or made them all up.

i could’ve been a singer. i could’ve poured my heart into writing songs of heartbreak, or i could’ve put a new spin on old tunes. i could’ve performed to a crowd of many, i could’ve been in a band. i could’ve connected with others over music, maybe someone would’ve taught me how to play the spoons. i could’ve played an instrument whilst i sang, or i could’ve been experimental with autotune. i could’ve had a following, or i could’ve sang in the shower just for me. i could’ve been rock, i could’ve been country, i could’ve gone beyond genre and been boundless. i could’ve played on the radio, i could’ve been an elvis impersonator. i could’ve poured my life savings into a tour, or maybe others would’ve done that to see me.

i could’ve been a jewellery maker. i could've meticulously carved wax, i could've fused metal together burning my hands rendering them sore. i could’ve sold my goods at markets myself or saw my wares beautifully displayed in the window of a shop. i could’ve mass-produced, i could’ve sourced rare stones. i could’ve scavenged materials, i could’ve grown inspired by the wonders of the sea. i could’ve poured over library books and learnt techniques older than me. i could’ve been entranced by vintage jewels and drawn inspiration into my creations. my jewellery could’ve be exchanged amongst lovers, gifted to friends. i could’ve bound people together like i did materials, they could’ve been passed down generations and told stories that outshined their creator.

i could’ve been a ceramicist, i could’ve crafted pots from clay i found in the ground and repurposed for use. i could’ve spent hours bent over a wheel, my finger tips could’ve been fired into the medium forever. i could’ve made great sculptures, i could’ve made tiny spoon rests. i could’ve studied abroad, i could’ve been inspired by archaeological artefacts. i could’ve crossed my fingers in hope that a piece fires successfully, i could’ve celebrated my wins and mourned my losses. i could’ve learnt not to be precious, i could’ve pushed myself to expand my skills. i could’ve spent hours reclaiming materials, i could’ve squashed my creations and created something new.

i could’ve been a filmmaker. i could’ve documented real life through a lens, i could’ve staged pretend. i could’ve wrote, starred in and produced my own material. i could’ve been a cinematographer for hire, i could’ve explored colour and symbolism. i could’ve yelled cut at the end of a take, i could’ve filmed solely on tape. i could’ve leant into themes, i could’ve bended genre to my will. i could’ve had my own tone, i could’ve mimicked others. i could’ve been brought in to advise, i could’ve taught techniques at college. i could’ve entered film festivals, i could’ve been described as an auteur.

i could’ve been a writer. i could’ve come up with grandiose tales or i could’ve reported on the day to day. i could’ve played with words, with prose. i could’ve rhymed and reasoned. i could’ve created worlds beyond our wildest dreams, i could’ve interviewed stylish folk for culture magazines. i could’ve helped others make sense of the world, i could’ve stared at a blank page. i could’ve wrote buzzfeed quizzes or hit pieces on famous figures. i could’ve wrote for the screen, and saw my worlds come to life. i could’ve wrote children’s books, the pages dancing with beautiful illustrations. i could’ve wrote from the comfort of my own bed, or in expansive stately homes. i could’ve put a piece of myself into everything i wrote and been recognised for my work. i could’ve wrote under a pseudonym and smiled to myself.

i dream and dream of what i could have been, but i forget that the reason i see myself so vividly in these lives is because they are parts of me. i incorporate these sides of me in the day to day without realising, they inform my taste and my personhood. i see the world through the eyes of an artist, i dance in the kitchen with my partner, i travel as much as i possibly can, i retell anecdotes to friends through animated performances, i sing along to the radio, i create key rings from secondhand beads, i take pottery classes, i studied film at university, and i write on substack. i love to assess my what could have been’s more than my what i am. i especially like to dwell on what i could’ve been if not for my chronic illness… but i am a tapestry of interests, my life a mosaic of different influences and colourful experiences. i can realise my dreams through small intentional acts and i am learning that i do not need to do them full-time or be particularly good at them to do them. as long as i am creating, i am being authentic to myself and if i’m being authentic to myself, i’m on the right path no matter where i end up.

XOXO gout girl

i understand it is to prevent hacking, but the only person hacking me, is me. i understand the need for 2-factor authentication when it comes to banking, to HMRC, to NHS apps. but the distribution across more and more websites makes me want to lay down and die. does anyone really care that much about hacking my non-sensitive work admin tasks? you can go ahead and do them for me if you wish! i lose my motivation to do the task almost immediately, often putting it off for another day but sometimes i’m forced to play ball. at the weekend i was in charge of booking a load of tickets for my friends, and of course my phone was on the brink of dying. i went to log into eventbrite on my boyfriends phone and had to enter a code from my email… after i had already turned it off. why isn’t there a warning for when 2-factor authentication (exhausting just to type) is going to affect me before i proceed. was there really a risk of someone hacking me so they could pinch my free club night event tickets? they could’ve had them, the venue smelt like farts and straight men circled us like flies.

the reliance on phones seems to be guised under convenience, but it’s rather very inconvenient. i thought we were all trying to cull our screen time? i’m out here trying to be a carefree girlie living off the grid (by that i mean, not grabbing my phone every 5 minutes) but 2-factor authentication demands i must have a device attached to me at the hip. i meet the sight of it with a groan, how important is this task to me? do i have the energy to go into multiple different rooms, overturning sofa cushions and staring into space to try to remember when i last saw my phone? can i tick an ADHD box which bypasses the process for me? i still haven’t found my wallet that i lost 3 days ago, i promise i’m good for it. i know that 2-factor plugins can be added to web browsers, but they’re invasive popping up every 5 minutes which disrupts my ability to complete tasks just as much… i just want to do my silly little internet tasks in peace.

in a world that is already not built for me, did they really need to add another brick? i’ve lost access to email accounts cos of 2-factor authentication, i had to go to the bank recently cos the app locked me out and i was just wailing i’m sorry, i have adhd! because i couldn’t present a card i had lost. i can never remember access codes or to update addresses — i’m likely to lose access because of myself more than a hacker. it’s great we’re moving towards a safer internet, but how about keeping a bit of basic accessibility please. maybe one day it’ll save my bacon. but until then, i’ll continue to procrastinate to avoid it.

XOXO gout girl

my grandfather and father had similar lived experience and with fathers day coming up, i thought i would write about them. my hungarian grandfather fled his homeland during the 1956 Hungarian revolution and my father escaped to Italy on a boat as an infant before emigrating to australia as part of the Istrian-Dalmatian exodus. both brilliant men became entrenched in tragedy and disability and passed away before their time. because of this, i was too young to engage with their history when they were alive and ask them questions about their existence. the knowledge i have of their experiences is therefore based on what my mum can recall (both in conversation and detailed in a book of her life i requested for my 25th bday) or from letters my dad wrote prior to his death. aspects of their existence might be slightly incorrect or convoluted for this reason, but either way, i would like to celebrate and remember them best i can.

my grandfather - ishván pest

the story goes that my hungarian grandfather ishván or as he became known since it is the direct equivalent, stephen, was waiting to board a bus as a young adult that was destined for the united states. his friend, eddie, who he was travelling with at the time needed the toilet and that trip caused them to miss the bus. they then chose to travel to the UK and my grandfather was sent to bradford. here he became a baker, and at some point moved down to London. he worked in a petrol station and met my nan, they dated and soon wed once my nan fell pregnant with her first child of two — my uncle and my mother.

my grandad either did not like to discuss his upbringing, or my nan did not ask many questions — both are probably true. we knew that he was adopted, but the circumstances of this adoption are hazy. we recently found the papers and can see he was adopted two days after his birth into a family with the surname pest, we don’t know his original surname. my mum speculates that perhaps an upstairs downstairs situation had occurred as at some point as there was an suggestion he could have been a decent from royalty. his only living relative my family knew of was referred to as “hungarian nan”, she and her stories are too lost to time. this wasn’t the last time he changed his surname though, my nan felt embarrassed to take “pest” due to the negative connotations the word has in the english language. whilst my grandad’s surname was pronounced pesht like Budapest, it is pronounced as it is spelt in the uk meaning an irritant, an annoyance. she first went by mrs best to guise this and my grandad later changed his name by deed-poll to preston. he became known as stephen preston, and this adapted surname is still used by my family today.

my mum speaks of this fantastical figure that is her dad and my grandad. he was highly intelligent, a master chess player, off-beat, loving and extremely funny. in between his two front teeth, he had a strip of gold that he would polish with Brasso. he played piano accordion and cooked them goulash. she speaks fondly of him tinkering in his workshop in the basement of their house, had a stall down portobello market where he sold jewellery that he had made and antiques. he was always bringing home random, odd animals from the market for them to keep as pets; crayfish, newts and a rabbit which sadly passed away due to them feeding it curry… it was the 70’s. he taught himself the art and science of horology (fixing/restoring clocks and watches) where he became highly renowned in this field and was employed by the science museum in south kensington. my mum speaks of a particular historical clock that only he was able to fix, i believe the majority of the watch collection have now been put into storage and he would’ve been one of the last to touch certain items.

a year after i was born in 1998, my grandad came to visit me and my mum but went home as he wasn’t feeling very well. my uncle took him to the GP, where they explained his decline in health, but the doctor insisted that he “just needed a holiday”. turns out he had suffered from a mini-stroke, which led to a major stroke. he lost complete movement in the left side of his body and subsequently became disabled, my mum speaks of a christmas eve where she was frantically wrapping presents as my grandad laughed on the sofa that he couldn’t even help her by cutting some sellotape. his disability robbed him of his career in horology, chess and independence — he could no longer drive and had to give up his car and small moped that he had kept L plates on for years; another colourful detail of his existence. we would visit him in croydon, not far from where i live now, and i remember this gregarious, cosmopolitan man who would make me belly laugh deeply. i can still hear his laugh even now.

in 2007 before his 70th birthday, he suffered a heart attack at home and passed away, i was 10 at the time. my grandad was the first, and remains to be the only, corpse that i have seen in the funeral parlour. i am grateful for that experience as it demystified death and i got to say goodbye to this wonderful man, if i remember rightly i kissed him on my head. my mum kept his ashes in our house for ten years and she would speak to him as she dusted around him. i mourn for the conversations i could have had with my grandad, the knowledge that he could’ve shared with me. i would love to know more about his history and what made him tick (horology joke). he lives through vibrant stories and various artefacts that my mum has inherited; some funny magnifying glasses he used for meticulous work and various beautiful watch faces. i wear a bracelet he made, my mum does too, and we carry him with us in memory and adoration.

Subscribe now

my father - zdravko paul stoičić

unlike my grandfather, my fathers history has been detailed to me in excess. but due to my age receiving these accounts across hundreds of letters and printed annotated photos, it was not something that i could digest. my dad was born in a village called crikvenica on the coast of croatia which he left when he was less than a year old to immigrate to australia via italy. in the below letters (3 pages out of 8), he speaks of how the conditions were so terrible in post-war yugoslavia, his family escaped via sea with no water or food (except for a bar of dark chocolate) so they did not signal their escape to the neighbouring country of italy, he reckons they were the first people to cross via boat. the italians were kind, they provided food and shelter and they stayed in a village called bari. they remained in these camps for 2 years, his sister was even born during this time, before they were offered migration to a different country; canada or australia. he says that this journey took 6-12 months, the ocean liner travelling via the suez canal. they reached australia, but they lost his dad for a while! once reunited, they were stationed in another camp in bonegilla before eventually moving to sydney. he speaks of living on a farm, riding his tricycle where there was every animal under the sun, he notes this was the best time of his life. reminiscent of the film eternity (2025) where people embody their happiest form in the afterlife; a large majority of men turn into themselves as a boy.

my mum lived in australia for a while but after 7 years, she was ready to return to the UK and put plans in motion to go back. one evening in 1995, her flatmate pestered her to go out and even though she didn’t feel like it, she pulled herself together and went anyway. here, she tapped a man on the shoulder asking if she could pinch a cigarette. that man turned out to be my father, and she remembers thinking to herself that she would know this man for a very long time. whilst this sounds like the start of a love story, it is rather a tragedy. there is a lot of messy family drama which entailed multiple moves across the globe, visas expiring, an engagement (my mum following in my nan’s footsteps planned to change my dad’s surname to Valentine — his middle name being valentino — as she disliked Stoicich) and a break up when i was 3 that led to a mutual commitment to family and idealistic intentions were born. plans were made to take turns visiting each other’s countries, copious letters and photographs were sent via post, and weekly long distance calls were had. we visited my father in australia when i was 4 and went on a holiday of a lifetime, but at the age of 5 my dad fell poorly. what happened to him is the stuff of heartbreak, but it happened nonetheless.

i had to get my mum to write down what exactly had happened to my dad a few years ago as when i was younger, i could not fathom any of this. she tells me that it started as a stomach haemorrhage; my dad had a stomach ache at work which caused an artery to burst. he was given a 19 pint blood transfusion whilst he was in a coma and doctors started chemo to suppress his immune system as they thought an autoimmune disease was the cause. but his organs became infected due to this, his brain and heart specifically. they cut him down the middle to tend to his heart infection, and in order to bring the inflammation down in his brain, they injected intravenous antibiotics into his neck. this damaged his brain and severed the part of your brain that translates hearing, so when he woke in hospital he was deaf. he was only in his forties. with nothing wrong with his ears, he became deaf and disabled for the rest of his life.

i didn’t understand how i had seen my dad recently and now, he was different. my memory of my father up until this point was that he was this cool fun guy, who worked in TV and had a speedboat. i didn’t necessarily mind the distance as our trips to australia were fun and special, i was used to our set up even though it baffled anyone i shared it with. i started to receive calls from this man who claimed to be my father, his australian accent and voice distorted from his deafness; it terrified me. i was told that it was my dad at the end of the line, i would speak to a third person who typed up what i said for him to read once i signed off with “go ahead”. hearing his voice made me cry as i didn’t understand, and i remember declining to speak to him. my heart breaks when i think of how quickly he found an alternative way for us to keep in contact and how dismissive i was — i have had to forgive myself as i was literally a child, i was 5. we bought a fax machine, and my dad would send letters all through the night. i remember the noise it used to make, and my mum often had to write to say paul, it’s 4am - speak tomorrow. my dad, always the romantic, wrote me beautiful letters via fax and as part of his brain surgery recovery, i have his entire life story across annotated pictures. but the amount of this was overwhelming (we have an entire 30L box full to the brim which we refer to as “dad box”) and his handwriting had changed which frightened me also. i couldn’t attach myself to the things i had knew; his voice, his handwriting, his image and so, i detached. i am grateful to have all of these letters as an adult as while i was too young, too upset, too distant to digest them at the time, it warms my heart to have now. he loved me so much, enough for the both of us when i withdrew, and i refer back to his writings of encouragement even now.

how people approached the topic of my dad, was not at all. me and my mum, traumatised by his illness and subsequent decline, was met with total disinterest. family members never asked about him, no one offered their condolences. this benefited me as i did not want to acknowledge what had happened… but it would’ve benefited me a lot more to have support and process it instead. he was positioned as a man that had fled the country abandoning his family, rather than a man that had succumbed to a terrible fate which meant he became epileptic and would never be able to fly again. he sent me birthday presents, christmas presents and letters of love in abundance. he was interested in every aspect of my life, my mum’s life. even though it didn’t work out between them, she says he was her soulmate and they never stopped loving each other really.

i started to pester my mum to see my dad when i was around 11, i hadn’t seen him since i was 4 and even though my mum warned me he would be different to how i remembered, i think part of me thought maybe it was all a big mistake… my cool fun dad surely would be there waiting for me with balloons in hand at the airport like he had years prior, ready to throw me about while i giggled profusely, and ready to take me fishing on his speedboat, passing jellyfish and other wonders of the sea. me, my mum and nan embarked on an adventure to australia for 6 weeks and i saw my dad for the first time in 7 years. i remember meeting him in a hotel room; his hair was long and unkept, he was wearing long sleeves in the boiling heat and he told me he loved me over and over. i smiled but i immediately became traumatised, i could barely go near him for the rest of the trip. whilst we were there, my mum became entangled in legal battles; his family, not particularly savoury characters to say the least, was trying to get power of attorney over him as they said he was not in his right mind. he was highly intelligent and capable, he had just become disabled. everything about that trip was different, before we were welcomed by his family with open arms, and this time we weren’t even allowed in their house. it was all too much for me to deal with and i took everything incredibly inward. he communicated with a whiteboard where i would write, and he would speak, but every time i heard his voice it continued to frighten me. my mum cut his hair, and we went on day-trips together but i would remain at arms length, in the sea, walking ahead. i went anywhere away from the pain of what had happened to my dad.

after this trip, i started to get poorly myself. i was diagnosed with hashimoto’s hypothyroidism at the age of 12 which is an autoimmune disease where the body attacks itself. i do believe the stress and upset of seeing my father is what caused this, i held everything in and as we know, women who do this are more likely to develop chronic illnesses (i won’t go into my health too much, but if you’re interested you can read in full here). the amount of childhood trauma i had accumulated by this point was beyond my years, i remember being told by a CAMHS school counsellor that she didn’t even know where to start — i didn’t see her again after that. i started to associate seeing my dad with illness, as if his conditions were catching. i continued to distance myself more, i didn’t want to see him again as i was terrified of getting ill further; my teenage years were spent in bed, unable to get to school, and i couldn’t risk my life being more impacted by illness. he continued to write, to fax, to call but i would half-heartedly send birthday cards and updates in return.

as i started to get older, i started to understand things more. i was 17 and wanted to see him again but i wanted to get my studies out of the way first, just in case i did get sick again. he would write that he had a bedroom set-up for us in his house, how he couldn’t wait to see us, he loved us dearly and missed us often. i had recently been to LA which my dad had put money towards, my mum was bugging me to write in his fathers day card and to send him some photographs of my trip. i always found this a bit difficult, to write “to the best dad ever” when i felt i barely knew him. i did it eventually though, and 3 days before my 18th birthday in July 2015, we received the call he had fallen and died in his home. i was in bed at the time, and that bed became my site for a year. i deferred university, and entirely broke down. the guilt i felt was unimaginable, i always thought we had more time and i learnt the fathers day card i sent never reached him because i sent it too late. i remember calling my best friend at the time, bawling, and her reaction was so minute i thought she had misheard me. in my grief, i forgot to pay my mobile phone bill and giffgaff took a voicemail my dad had left me a few weeks later with it. i never received the care that i would expect one to receive after losing their father. i grieved more for the future, than i did the past — i had just completed my BTEC in tv and film and he worked at the ABC as the satellite coordinator (the only one to hold that job) in australia for years. we had so much to talk about, our adult relationship was really just starting. but that was snatched away from me, as was knowing my father when i was a child.

a few years ago, i got made redundant and i was due to receive full pay for my notice period which was 3 months. this coincided with the year of my mum’s 60th birthday. sod it, i said, let’s take a trip to australia. i hadn’t been since i was 12, but now 26, i felt ready to go back. we planned a trip of celebration, to visit places that my mum spent time with my dad and to ultimately visit his grave. i had never been able to watch the funeral — i still haven’t — but we knew where the plot was and i suggested we should go on valentine’s day. his middle name was valentino, which my mum wanted to change to valentine for a surname if they got married (as mentioned above), and he had sent me a bracelet in 2005 that said “to stephanie, my valentine”. i would also always remember the date. our trip was wonderful, it was so nice to spend that amount of quality time with my mum for 3 weeks and be shown australia through her eyes. she claimed she could see my dad on every corner, telling me stories everywhere we went. we had bottomless brunch for her birthday at the bar where they first met, we stood outside of his old house where he would play guitar to my mum and stroke her hair. we visited landmarks and revisited experiences i remembered as a child. we visited the aquarium i had seen and remember from VHS tapes, we went over the bridge that my dad drove over with me and pointed out his dream house — the one that looked like a diamond. i made sure i had a coke slushy from mcdonald’s which i remember vividly having there; my emotional support drink. valentine’s day approaching, we went to buy some flowers and a card, then went to the plot where he is buried.

as i mentioned prior, my dad was croatian and therefore his family were devout catholics. we were asked to pick a song for his graveside funeral, we chose a 90s club-hit which we laugh was probably incredibly inappropriate when we look back, but it was my parents favourite song with lyrics that were appropriate: and i miss you, like the deserts miss the rain. i knew in advance that his grave was what i call a double decker; my nono (grandad) at the bottom, my dad in the middle and my nona (grandmother) on top. but nothing could’ve prepared us for what we discovered, my father’s grave did not have his name on. we could only tell he was there from my granddad’s obituary, and a small photograph of my dad. we both cried, horrified. this was a product of his terrible family, money hungry and unwilling to pay for the engraving, denying him of the respect he deserved. there’s so much power in a name, and he has been placed in essentially in an unmarked site — something reserved for criminals to deny them of public commemoration. i remember lying down, knowing he was underneath me, crying as my mum went back to the car to get something. she gifted me a slate plaque of a photo of me and my dad, i decided to write on the back of it with sharpie. his name, his death date so that he could be respected, honoured and seen.

there’s so much i’ve missed out which paint a picture of my dad’s character. my dad worked at the ABC in australia in the master control room where he meticulously watched a load of TV’s to identify mistakes. he loved a gadget — when he passed, they found he had wired up his own illegal connection to access cable TV for free. he was a certain flavour of intense at times, but my mum says he was intelligent, knowledgable and very funny. she speaks of his dancing eyes, and natural eyeliner and his lion’s mane hair, that i’ve inherited. he spoke with his hands, and dusted crumbs off them in a specific way whilst he was eating which i also do. my mum says we have similar mannerisms, similar temperament and (occasional!) pedantic nature; she often debates the concept of nature or nurture. he was difficult at times, and so am i. these are traits i will never know firsthand, but are ones i can live through via stories and the comfort that i carry parts of him, even though he didn’t teach me. i live vicariously through very precious VHS tapes, his voice and our time together now pretty much burnt into my mind from years of watching. it hurts that i never got to spend time with him as an adult and i experience this grief backwards, i mourn for the future we could’ve had more than what we did have. having my own experience of chronic illness and disability, i know i could’ve coped better with age like i was on the way to when i was 17 before he died. i will always be sorry for the distance that was between us — the literal distance as a product of being across the world and the distance i put between us as a product of trauma — but i understand this as circumstantial rather than of choice. i have two tattoos in his memory, the first being his signature (ZPS) that he would sign his letters with and the second, being a line from one of his letters (joy, joy, joy). something he would always say to my mum is that he could never wallow and think why me, because why not. his name might not be listed on a plot in australia, but he does not live there in my mind. he lives on the page, his handwriting dancing as he writes something incredibly beautiful and profound; always the romantic, always present. i connect with him now like he taught me, through the written word.

to return to my original opening point… my grandfather and father suffered significant hardship that i will never know the complexities of. whilst i have my own entanglement with chronic illness, i have grown up in a safe environment and never had to flee my living situation. i will never understand what it is like (i hope) to leave a home that has become war torn, i have never had to learn a new language out of necessity and adjust to a completely new culture. their history runs through me as i am quarter hungarian, half croatian and a quarter english: a predicament for the england v croatia world cup game tonight. i admire their strength to build their families, cultivating better futures for their children. to become successful in their field, to climb up the ranks of complicated careers. they found friendship, my grandad found kinship in the hungarian association, and my father would spend christmas with the salvation army. they loved without limit, always wearing their heart on their sleeve. their perspective on life enchants me, how they remained open and positive when life really gave them the brunt end of the stick. while i have a tendency to wrap myself up in a quilt, grow weary towards my situation, they faced things head on and never stopped advocating for themselves — they both won their cases for medical negligence. they both encapsulate per ardua ad astra, through adversity to the stars. wherever they are, i hope my grandad is playing chess again and my dad is listening to lou reed.

p.s. my dad always used to call me grasshopper bcos i was always jumping around as a kid and on the 10 year anniversary of his death, i saw there was a grasshopper on my mums bedroom ceiling! in essex! the south east of england! people never truly leave us.

XOXO grasshopper girl

i grew up with a hairdresser as a mum which has mostly been a blessing, and only at occasion, a curse. i have experimented with my hair in a thousand ways.i have had every haircut under the sun and dyed it every colour of the rainbow. i think of the practise of cutting hair as inherently intimate, but we tend to outsource the job to strangers (which is something i plan to discuss in future articles). i have never had to worry whether the stylist will understand my vision as it so happens, my stylist is my biggest cheerleader. i am not subject to awkward small talk, forcing me to rehearse lines about my life in my head before i sit in the chair. this is an experience i have always shared with my mum, she is never phased by my requests and rarely discourages me, even if i ask her to shave it like i did in the summer of 2016. i barely have to book an appointment and i am not constrained by costs which means i can act on altering my style almost immediately. this has granted me freedom, but sometimes when i’m feeling particularly impulsive, regret. but oh well, my relationship with hair is very fluid — i know it will grow. awkward stages are just that, a stage. a haircut becomes a marker of a period in my life where i wanted to try something different, or maybe i was different and i wanted to encapsulate that. i’m no stranger to playing with gender and i am a lover of change. i view everything as a better opportunity to understand myself and i use my hair as a tool in order to do this, for better or for worse.

i mentioned during a doctors appointment for a mental health assessment that i had cut all my hair off recently, my hair probably the longest it had ever been now sits above shoulder length. the female doctor said did you really do that? in a voice that was tinged with more concern than any response she had given prior to my struggles with the side effects of the SNRI’s prescribed for fibromyalgia. during a heatwave recently, i felt agitated by my hair. my hair is particularly thick, and i honestly just wanted rid of it during that moment. my mum was present with her scissors, so that’s what we did. under the spring sun, we tamed the beast on my patio; my history and everything i have carried with me the last few years was soon sprawled across the floor. i have been thinking on our relationship with hair ever since that appointment, it’s something i often come back to as my 2019 MA dissertation was about the connotations and experiences of women and non-binary people with shaved heads. i discussed this recently with someone i had just met, and she proposed the idea that when she sees someone with a shaved head, she thinks they have a journey ahead of them. i like that idea and wish i came up with it myself, we are all on our journeys but some are perhaps more confident in displaying that than others.

the value we put on women’s hair is astounding, my long locks were often tangled from my inability to look after them because i am chronically ill but cutting them off into a more suitable shorter style is more alarming than not. i came across as more presentable and sane with my hair resembling that of a birds nest, merely because it was in a feminine style and was what was expected of me. as a society, we are wary of risk. alarm bells sound when someone does something “drastic” like changing our haircut. but to me, are we not just changing our avatar? whilst i miss plaiting my hair and the style that i spent years growing, i have merely pruned the bush and can look forward to the stages of growth once more.

leaves will fall and hair will grow, unless it’s related to a health condition that prevents it, that’s life. i can marker different stages of my existence, ages and interests all from a photo of me rocking a different haircut. it is healthy to change, even with as something as temporary as a haircut, if only it was perceived as such. there’s a bravery in a new look and from experience, there are no bad haircuts really. you suit every style, because underneath, you still look like you.

XOXO gout girl

even before my diagnosis of hashimoto’s hypothyroidism at the age of 12, i was tired. i would sleep through the night deeply as a baby, and sleep in as a child at sleepovers when my friends rose at 6am. getting up for school was always been difficult, and i left at 15 due to my inability to get out of bed as a product of chronic fatigue. i have struggled to attend university classes, get into work and i still can’t leave the house everyday because fatigue will always catch up with me. i’ve never been a morning person, but i have always struggled to sleep at night. i yawn incessantly, i always have done. being tired is my one true form, and it is a surprise if i wake up with any energy. i’m pretty used to my lethargy by now, but with me starting new medication for my fibromyalgia that has made me even more sleepy, i’m officially tired of being tired.

whenever anyone shares a bed or room with me, they note my constant yawning and fidgeting. if you’re that tired, just go to sleep! i’ve been told on numerous occasions. if only it was that easy; i take magnesium glycinate, l-theanine, and CBD oil. i spray my pillow with lavender spray, i wear an eye-mask and i have the best intentions. but when i lay my head on the pillow, but that’s when the chatter starts. i can’t relax enough to fall asleep, i reflect on my day or future worries as the person next to me starts snoring within minutes. and yes i’ve tried yoga! the morning is a different story though. once i’m asleep, it’s impossible to wake me up. i go into a deep comatose-like state, awaking groggy and barely ready for the day ahead. i am non-negotiable in this state, i fall back to sleep and miss attending commitments like work, school etc. it sometimes feels like my body has a fail-safe that kicks in when i subconsciously think participating in something is going to be too much, i unconsciously wrap myself in my quilt and remain in the safety of my bed. sometimes i’m so filled with anxiety about missing my alarm, i don’t sleep at all. either way, i’m dragging myself through my days like a tonne of bricks.

i was recently diagnosed with fibromyalgia, and my consultant said that my lifelong sleep difficulties were due to my inability to switch off. i already knew this in part due to having ADHD, but what really stood out to me is when he said whilst i sleep i am digesting years and years of emotional, and physical pain. no wonder i wake up exhausted, my brain is working overtime instead of resting and recuperating! one route of treatment he proposed was to try an SNRI called duloxetine which should even out my dopamine and serotonin levels, essentially making me register less pain. well alright-y then.

duloxetine did help my pain a little bit, but the tiredness that came with it was unreal. as a sleepy girl who struggles to get through the day as it is, i didn’t think i could feel more tired. shortly after taking my dose in the morning, i would start to feel the effects and by 4pm, i was ready for bed. the thing is, i don’t have any energy to spare! this absolutely floored me and i had to be signed off work to cope. i did raise this with my consultant, but he was not particularly interested as he said he is a pain specialist, not a sleep one. he suggested i try to take duloxetine of an evening, and to try a nightly glass of wine to help me drift off which really sums up the usual patients he sees as a private clinician in harley street, london. i found taking it before bed was worse though, i could not keep my eyes closed. i think this is due to me metabolising the medication overnight; it made my heart beat a samba and my restless legs perform a nightly can-can dance that kept me, and my partner, awake. the lack of sleep made me manic. i couldn’t sleep at night, and the mania pushed me through my days. i felt euphoric, but i didn’t have the energy to leave the house. i was cycling through a hundred different moods, and my impulses became unmanageable, causing me to cut off all my hair.

i quickly returned to taking my tablets of a daytime, but with that, my daytime fatigue has returned. as someone with two energy limiting conditions already, my scarce amount of energy is very precious. i shouldn’t have to pick between being in pain or being awake, so i have made the decision to titrate off of duloxetine. these are the sacrifices we are expected to make though, i remember seeing my endocrinologist earlier this year who told me my blood test results were beautiful but she couldn’t help me with my brain fog, or my pain, or my fatigue. we have to be happy with the small wins and suck it up, even if the medication that is “helping” reduces our quality of life further.

tiredness is a huge part of my life whether i like it or not but i have grown comfortable with my form of organic tiredness, the type i know inside and out. i cannot accept any additional artificial tiredness, self administered via a tablet. i am disappointed that this medication did not work for me, but having lost such a large proportion of my life to fatigue already, the small gains are not worth it. back to the drawing board i guess.

XOXO gout girl

both my partner and i are disabled, i have adhd and am chronically ill, whilst he is physically disabled (and also probably has adhd). we always fall out over housework, the odds are against us with our various health conditions, but we still need to run a home which causes friction. i always do too much, i get bursts of energy, am adept at multi-tasking and spend more time at home. he always does too little, has a one track mind and requires reminding but arguably is more busy at work. we both live in pain. we have discussed the prospect of polyamory just so we can have a cleaner as our third. i would be taking applications from anyone with executive function, but i think maybe i don’t need to now as i’ve now met god, and god is a dishwasher.

we have lived together for 3 years and was looking to upgrade our space because honestly, we were driving each other mad in our tiny shoebox of a flat. we found a beautiful new abode, but said abode has an open plan kitchen. uh-oh, no more hiding dirty dishes behind closed doors and hoping no guests grab themselves a glass of water during their visit. we are going to have to sit in the room where they’re piling up, we can’t plead lack of object permanence. the route to the outside space is via the sink, we’ll be reminded of our filth whenever we want to relax. we’ll have to keep on top of it, but how do we both become able-bodied domestic angels overnight?! i believe in miracles.

we didn’t know. we didn’t know that the flat had a dishwasher. the tenants were in when we viewed the flat so we didn’t investigate the cupboards, and the listing did not include any pictures that i would usually obsess over, no zooming into every nook and cranny. we received the keys a month later so that was when we finally made our discovery, a dishwasher that looked like a cupboard, we genuinely held each other in silence.

i didn’t know a dishwashers power, i’m working class! i’ve never had access to this wonderful machine before. why does no one credit a dishwasher as the ultimate relationship saviour? as the cure to executive dysfunction, as the ultimate accessible appliance. it should be the first solution i read in an agony aunt article in relation to men being a nightmare in regards to household chores, there should be a link on the NHS website when you google any chronic illness with a significant discount code for those diagnosed. is it a gateway drug? i can’t ever live without one now.

our kitchen, clean. our relationship, saved. our time spent doing literally anything else over boring washing up, in abundance. i’ve never been one for religion, but call me converted.

XOXO gout girl

i have been that cool, chronically (ch)ill girl; chill girls don’t draw attention to their chronic illness, chill girls don’t ask for alternative dietary requirements, chill girls say they don’t have accessibility needs. i have caused damage to myself, and to my body, by pretending to be chill; to not dare take up any more space in the world than my peers, and make myself as small as possible so that i can blend in. honestly no worries, honestly it’s fine, i say as i accept meals that i know contain mass amounts of gluten so not to offend the host. i’ll make it “easier” for the group by agreeing to share something that i know will make me sh*t myself later on. i’ll drink beer in a nonchalant way when cider is unavailable, and sure i can definitely stand for prolonged periods of time whilst we socialise with no issue! i always do too much, i always overcommit and book in a thousand plans when i’m feeling good then cancel at the last minute when it all catches up to me which frames me as a flakey, bad friend.

this is mostly my fault, but maybe fault is the wrong word. i carry this behaviour with me from my childhood, it was hard to explain and educate other children on the reality of being chronically ill. whilst they were bundles of energy, i was tucked up in bed. being gluten free and dairy free was merely a myth in 2009, how was i meant to explain that a lunchtime milkshake at the wimpy would disrupt the absorption of medication i’m on for life aged 12? i seemed to attract a lot of dodgy friends around this time too; they were outcasts like me, but they did not share my naive softness and did not treat me very well. i learnt from them that people didn’t particularly care about my troubles or illness so i stopped talking about them entirely. i think part of me didn’t want to acknowledge a lot of what was happening to me either. i started to withdraw socially, sever my friendships as i didn’t have the energy to upkeep them, and would provide very elusive excuses as to why i couldn’t attend parties, school proms and other engagements last minute. i missed out on a lot of formative experiences due to this. my mum would encourage me to engage in the world as a child as she would say “you won’t get these years back” to which i would reply “i don’t want these years back”. i didn’t understand depression at the time, but upon reflection, it’s pretty textbook. i do also wish i could get those years back now.

when i started to make stronger friendships in my later teens, i still kept people at arms length. i never really explained why i couldn’t attend college daily, and why i would leave functions early from what i can identify now as burnout from socialising. i knew i had a chronic illness, but was unaware of my neurodiversity at this time. i would beat myself up for not being able to engage like everyone else, and that became a deep rooted self-hatred which i only properly started to dismantle once i was diagnosed with ADHD at 23. my aloofness made me look cool and laidback though, and i carried this with me.

i had some pretty heavy party years, hiding recovery from surgeries that i still don’t discuss. i became the ultimate cool girl; hot, game, fun. without the sex though, but that’s a story for another day. i had completely detached from my chronic illness, and hid any sign of it. i stopped having needs at some point, and i would just go along with everything. when i lived in a shared house, i would lock myself in my room for days at a time. i didn’t want anyone to see what i was really like; bed-bound, depressed, chronically ill. i just wanted them to see the fun, cool, chill girl down the pub. i wanted to protect everyone from the horrors of the reality of being chronically ill, but who was this hurting other than me? it felt like a secret i had to keep to myself, pinky promise to never tell. i navigated with traits of imposter syndrome, terrified that if anyone found out i was lying about being healthy, i would be extradited from society.

i am a people pleaser as an adult, but that’s because i cherish the friendships that i have. i am lucky to be surrounded by some pretty special people and i want everyone to be happy. i want to attend every event possible, and i want to spend as much time with my friends as i humanly can. i will say yes to everything meaning my calendar is often, overwhelmingly, over-booked. i also have a partner who is incredibly sociable, he is disabled and has his own approach to that, but he tends to be able to push through in a way i can’t. whilst i am comfortable cancelling plans (to some extent) as a way to survive, this isn’t something he can do with ease which means he has held me to attend plans in the past that have led to me to have incredibly intense meltdowns afterwards. being more engaged with my needs means i am more attuned to my body crying out. meltdowns cause me great mental distress; i get so overwhelmed and struggle to regulate my feelings, cry hysterically and eventually shutdown. i experienced this most when my partner would force me to spend weekends with his parents, 3 intense days that start at 9am and finish at midnight. i cannot spend that amount of time with anyone let alone people that demand a lot of my attention, drain me significantly and force me to perform for them. i had a falling out with his mum which was born out of me struggling with symptoms of burnout and chronic fatigue whilst on a family holiday which was really the turning point. i was extradited from the family due to being honest about my illness, my worst fear coming to life once people discovered i wasn’t healthy. this set me back a lot but without the pressure of having to see them anymore, i can also extrapolate that agency for other things in my life.

i haven’t crashed out or had a proper meltdown for a while, and i credit this to my decision to not fill my calendar to the brim this year and say no. this means i have missed out on a few things that i would’ve liked to attend, but i wouldn’t of enjoyed it propped up dead like weekend at bernie’s anyway. i am making a conscious effort to slow down, like i said i am only hurting myself by pretending to be chill with absolutely no needs. i am trying to be more honest about my chronic illnesses, use elusive excuses less and set perimeters in advance. i would love to attend your birthday drinks, but just to let you know i have 3 busy in office days at work and engagements in the evening so i might be too tired. i’ll do my best though. could we maybe meet at your house rather than the pub? i would be more comfortable on the sofa there. would you mind if we picked a different restaurant so i can access something gluten and dairy free? this openness has been met with nothing but open arms, and if it hasn’t like my partner’s mum, this is a reflection of their character. in allowing myself to have needs, i can meet them and pace myself better. i can eat what my body requires, and living in a world of compromise, i can eat something alternative beforehand if there are no options for me without the guilt of being polite. i can live life to the fullest capacity by understanding my capacity. i can reclaim rest days without the feeling i should be doing more, or that i have more of a responsibility to other people than i do myself forcing me to push through and ignore my body. i have been using a visible armband to track my symptoms and if my baseline is low, like today, i can cancel the forest bathing session i had planned. it would not be good for my body to force myself to walk in 29 degree heat when i’m already dysregulated. there will be other sessions for me to attend, other things for me to experience. life is good like that. i can be a better friend, partner and daughter by not pretending. my experience means i meet anyone’s hardship with an extreme amount of empathy, love and care. i never expect people to push past anything for me, i don’t mind if they cancel last minute if they are not doing okay, and i never want anyone to feel like they can’t express themselves, so i don’t know why i set such a ridiculous standard for myself. the longest relationship we have is with ourselves, and that is a relationship i have neglected for many years. i can still be cool, hot and fun, but i can also be gentle, thoughtful, and honest towards my capacity, and towards myself.

XOXO gout girl

i love books. i love how tactile they are; their smell, the noise of the pages crinkling under my touch. i was the neurodivergent child that read beyond my years, and would grow upset when other children did not treat their books with the upmost care. i love visiting bookshops and browsing charity shops on the weekend, i love the notes that strangers have left in preowned pages for me to find. i love lounging on the beach devouring chapter after chapter, eventually using my book like a swiss-army knife; as a way to block the sun, as a pillow, as an eye-mask. i display what i have read in my home, and collect what i have not knowing that one day, when i am ready, a whole world is waiting for me within the pages. my favourite job involved me arranging and stacking books for hours at a time, i would sprawl across the floor reading the blurbs of books i was drawn to, using their covers as a visual menu for me to discover. i am consciously moving more and more away from electronic devices, i use a comically small phone as a way to keep my screen-time down and actively invest in physical media, so it was a shock to me when i found myself purchasing a pre-owned kindle off eBay earlier this year. within my first two weeks of owning it, i had read 6 books. i credit this to certain design features, and accessible qualities that i did not realise would make such a positive impact on my capacity to read, who knew my kindle was such an accessibility king.

anti-glare, backlit screen

i’m a child of the internet, so i love me a screen. like a baby, i’m attracted to the bright lights and novelty of devices, my neurodiversity feeds off the dopamine i get from notifications and my inquisitive nature could be best compared to that of a cat so if there’s a screen nearby, best believe i’m staring at it. as someone with ADHD, peeling myself away from my iphone has been an intentional act. their addictive nature serves me no benefit, i have lost hours down reel rabbit holes, but having grown up in a climate where i have received all of my information via a screen, i need to get my fix somehow. my kindle has been a perfect substitute. instead of reaching for my phone in times of boredom, consuming information that has no value, i can now reach for my kindle and get the same kick. i’m turning pages like i would be scrolling. i’m bathing in the comfortable - but less harmful due to the sidewards positioning - blue light that doesn’t disrupt my sleep. i suffer from light sensitivity so being able to have agency over the backlight is beneficial as i sometimes find the pages of a book to white to look at if i’m in broad daylight. the screen has anti-glare too so i can use it in different weather, and i find i focus better on the words than i do a normal book. no need to sit in an awkward position to block the sun, i can see just fine from here.

long battery

i know you don’t have to charge a book. i know this. but in a word of convenience where things are actually often more inconvenient, the battery capacity of the kindle is very welcome. it often takes too many steps for me to charge a device, my electric toothbrush is covered in cobwebs and i sleep my best when my phone is off-charge. but the battery life of my kindle is strong, sturdy - i’m in safe hands. it barely drains when i consume for hours, it doesn’t die mid-chapter at a key moment, like my phone so often has. i’m able to just leave it in my bag and use it without worry, with weeks in-between charging sessions. i’m never disappointed, and in fact eager to charge it when the time comes as i’m so impressed with it’s capacity; it deserves a little treat.

weight

my days of lugging hard-back books in a bag over my shoulder in a brooding, art student-y way are over. i live in chronic pain and as much as i love books, they are a weight that i struggle to carry. i often have to abandon the book in my bag and replace it for a bottle of water, deeming my travels well hydrated, but boring. on days i do carry one, i can only carry one so switching from novel to self-help book is impossible; if i’m in the mood for one but only have the other, nothing is getting read. i do not have this issue with my kindle though as he slots into most of my trouser and skirt pockets, it weighs nearly 50g less than my iphone 12 max and i can carry multitudes of books without any issue. my kindle, my king.

dexterity

i experience wrist pain and i can find it difficult to hold a book open with two hands, keep it open and then page flick. i can lose my grip, drop it or cause more pain by straining especially if it is heavy and has a particularly flexible spine (unlike me). but with my kindle, i can use it one handed! no need to bend back any pages, i can tap with my thumb or a finger on my opposite hand, swapping which one is holding it very easily. as previously discussed, how lightweight it is really helps with how i hold, or rather lovingly cradle, this device.

books at my fingertips

perhaps the most obvious of all, but i love how easily i can access books on my kindle. any book i’ve heard about being a best-seller, or fawned over the cover of as i’ve walked past a bookshop, is right there for me to download and enjoy. i can purchase, and immediately access a range of books in all different subjects which is pretty neat if you ask me. this serves my impulsive side pretty well as i can discover so much all for a pretty reasonable price, or for free when i had my kindle unlimited trial. also, if i want to channel my inner 90s hacker girl, i can also torrent books onto it… shhh. i support authors everywhere i possibly can though, i recommend material via word of mouth and if i could not afford to access their work during my time of reading, someone i have spoken to about it has since bought a copy. my kindle has made it possible for me to access a breadth of material and subjects that i was not social-economically able to access before. i’m a big fan.

maybe it isn’t news to you that e-readers do bits, but it was to me. the downsides of my kindle is it has ads, but i’m pretty used to mentally not acknowledging them since i work in advertising. i have my eyes on a kobo so i can access free library books which is just a wonderful concept. please don’t stop buying books when using an e-reader though, i certainly won’t.

XOXO gout girl

Subscribe now

the gross - vomit, bile and toilets

i am what we call a “sicky person” which means i could vomit at almost any moment, and i have seen inside myself more than i care to admit. due to how often my head is in proximity to a toilet bowl, i no longer receive the tenderness of someone accompanying me, holding my hair and patting my back. i now embark on solo ventures where i question my very being, staring into the void of my yellow bile. outside of pregnancy and hangovers, vomiting is rarely a topic that is discussed, and it was such a pillar of my personality that i barely questioned it. sometimes, i just get too hot and feel sick, i credit this to my internal thermostat being broken due to hashimoto’s hypothyroidism, and being unable to regulate my temperature. only recently did i discover that it also disrupts my digestive track, slows my metabolism and makes me nauseous as a result. i think of all the places that i have vomited - on my way to work in the street at 7am, skilfully into a crisp packet on a train platform - and in effort to hide this, i put my body through ridiculous amounts of stress and jovially denied the severity, refusing any offers of attention or soothing due to the regularity. if i had felt more comfortable in acknowledging this, maybe i would have found coping mechanisms sooner. whilst i do not celebrate the act of vomiting, it is uncomfortable and painful at times, i have grown unfazed by it’s presence and now see it as a visceral reminder that i am not looking after myself in the way that i should be. i have to take my medication 30 minutes before i eat so would often skip breakfast, making me nauseous on my route to work, so i now making eating before travel a top priority. ginger melts are an absolute lifesaver, and i consume these almost daily. i press the pressure points in my wrist to ward off travel sickness, sitting in the front seat where possible. if using your fingers is tricky, you can also purchase wristbands that do this for you. by embracing the gross parts of ourselves, we can learn how to comfortably live with them.

the gout - accepting a “masculine” diagnosis

gout; a type of inflammatory arthritis that predominantly affects males over 30 and famously, henry the eighth. a diagnosis that i, a 28 year old woman, have received. i could never have imagined to have so much in common with the pork pie dads down the pub, the king that celebrated beheadings with a side of beef, but my uric acid levels bind us together and create crystals around my joints. i could argue that crystals are inherently feminine, if only green aventurine formed around my knees instead of uric acid to soothe and reduce inflammation. femininity naturally follows me as i cried when i received this diagnosis which i cannot imagine the men before me did. however, maybe i will take a leaf out of their book and make light of the situation. gout is fondly referred to as “the disease of kings” and it might just be a signifier of a life worth lived. an ode to the steaks i have cooked with my partner, the glasses of red wine toasted with friends, the rich indulgent meals i have tucked into on holiday. maybe i’m romanticising something that causes me pain, but can’t a girl dream.

the grimy - the realities of being chronically ill

being chronically ill is not pretty. i’m no stranger to a depression pit, and i have spent a lot of my life rotting in bed. i also struggle with up-keeping basic hygiene. as a society we value cleanliness so highly, and other those who cannot maintain these exhausting, time-consuming routines. with the rise of the “clean girl” aesthetic, women with chronic illnesses, disabilities and/or mental health issues are further marginalised. i often cannot shower before work, i rarely wake fully rested and have to use my energy just to get up, reserving my strength for my 50 minute commute into central london. i usually run errands in the tracksuit i’ve been wearing, and sleeping in, for the last week and my long hair is too hard to wash and detangle regularly — i reckon my body consists more of dry shampoo than it does water. i am a self confessed grimy girl, but this does not mean i can’t feel nice about myself. in being honest about my capacity, i can put things in place that help me manage more.

i made the switch to cotton underwear a few years ago, the breathable material increases the longevity of wear, and i find them comfortable for day-to-day activity and sleeping. i love baths, i find them a lot easier to withstand than a shower and i can wash my hair with more ease. i often have these on my lunch break when i am working from home, and spoil myself with products that make me feel good… copious bubbles, hair treatment and magnesium salts are an absolute must! i recently got a product trial from grüum (not an ad) which included their melting sleep butter, and when i drop a little bit into my bath, i emerge with skin like i’ve applied a full body lotion that i would never have the energy to do with my hands! i always airdry my hair, i’ve found products which make it look nice without all the effort of styling with a hairdryer and no heat is better for your hair too! if i can be bothered to wear any makeup, my routine is incredibly minimal. i have used the ordinary’s serum foundation for years which is incredibly cheap, lightweight and it doubles as an spf. i add a bit of mascara and that’s me done. i’ve found cleansers that double as makeup remover a good way to wash my face of an evening if i have the strength, otherwise i stick with products i can sleep in that do not flare my skin up overnight. i struggle to brush my teeth so i have two toothbrushes, i use my electric when i do not find it too overstimulating (ADHD-core) and then a soft manual for lower energy days. my dentist has prescribed me a high fluoride toothpaste that helps prevent tooth decay, and repair the damage that vomiting has caused. i sometimes let my friends know when i’m having a bit of a stinky day before i go to meet them, and they do not love me any less. we can harness that love for ourselves too, we just have to cherish ourselves and be understanding with our capacity.

disclaimer: my intention with this article was to destigmatize our associations of being “gross” related to femininity, and provide some gentle examples of how i manage to navigate these feelings myself. i use the language of gross and grimy as a way to reclaim these negative feelings, and do not wish to cause offence if you experience these struggles but are not comfortable with these descriptors. i understand that with chronic illness, cleanliness is a basic human right that is often stolen from us, and this is very upsetting. if you do not identify with this, or are unable to act on any of my suggestions above, you are not gross; i often am unable to act on all my suggestions too. i say with the upmost love and care that you are doing your best. i hope that by contributing to this conversation, i have made you feel less alone.

XOXO gout girl

Subscribe now

i was 12 when i was diagnosed with hashimoto’s hypothyroidism, a condition, i was told, women in their 30s are meant to get — an age that felt so unimaginable to me, an age i surely would never reach. i was 12 when i was told by a doctor i would die if i did not take my medication daily, i was 12 when i was punished by the education system for being too poorly to get out of bed, i was 12 when i started to grieve a life that felt over before it had even begun. i can say with confidence, these years were the hardest. i spent these formative years in hospital beds, or often just my own bed, unable to engage in the world in the ways a child should be able to. my mum was threatened with prison for my inability to get into school, my home was infiltrated by men in odd socks trying to forcibly remove me from the safety of my bedroom, and we were even referred to social services because my mum mentioned to the doctor once that she had considered looking into alternative medicine. when i should have been met with kindness and compassion, i was met with harsh conditions that i could not imagine being able to endure now let alone when i was so little. i was 15 when my mum pulled me out of school as a by-product of having all of my GCSE subjects taken away from me. i was removed from my classes, not allowed to engage with any of my peers and destined to study in isolation teaching myself English and Maths so that I could remain within what was legal. my illness was treated as a crime, something that i had done to act out and i was to be punished accordingly. i was a curious child and having my future, my quest for knowledge torn from me was a fatal blow. if it wasn’t for my mum’s strength, i could have become the nothing that the education system believed i would become. but she managed to get me into college a year early, and my life started to feel brighter, one that i could maybe get used to living.

the thing with grief, is when you grow more comfortable and befriend it, there’s always more around the corner. i received extremely high grades from my BTEC and had been accepted into the University of Greenwich to study film in September. three days before my 18th birthday in July, i found out that my dad had passed away. my dad, entrenched in illness and disability too, lived in Australia and had done for my whole life. i was 5 when he became poorly in a way i could not grasp, he became deaf due to a surgical procedure gone wrong that started as a stomach ulcer which i still cannot grasp. i believe the shock of seeing him aged 12 was was brought on my hashimoto’s, and for that reason, i was terrified to see him again and kept putting it off thinking we had more time. i wanted to get my studies out of the way, i couldn’t afford losing my education again and risking being diagnosed with another chronic illness. it is only with age i can forgive myself and relinquish some guilt, but like my chronic illness, i have now lived longer without seeing my dad than otherwise. it’s funny how we can still connect with things that are gone.

i was diagnosed with ADHD inattentive type at the age of 23, this was both life changing and heart wrenching. i could finally let go of my years of hate towards myself, my conception that i was simply just a bad person who was just bad at things, i could finally understand why i struggled. i say that lightly as of course, i still remain my worst critic (working on it), but ultimately it did allow me to accept myself in a way i had been unable to prior. but it of course came with more grief, why hadn’t this been noticed earlier? i had experienced meltdowns as an infant where i would become so inconsolable that i would sandbag, i had an LSA in primary school and was taken to Marsh Farm when Ofsted would visit, i was such a perfectionist i would rip and rip pages of written work out until i wrote without making a single mistake. would my treatment at school have been softer if i was diagnosed at the time of my troubles? would i have been treated less like a naughty child if there was more understanding that my brain worked differently? i grieve for the acceptance i could’ve had. i of course reflect on this now when we understand neurodiversity more as a culture, and perhaps things might have played out exactly the same with or without a diagnosis. i have tried to let this go best i can, and try to make accommodations for myself to work with my brain rather than against it, but this remains a work in progress.

i have just finished my MA degree and i’m in my first “proper” job at 25. we are post-pandemic where i was on furlough, and had been shielding under the impression that my auto-immune disease would increase my likelihood to die if i was to catch covid. i had been denied the reasonable adjustment to work from home an extra day to manage my fatigue, had been made fun of for experiencing sensory overload in the office and i am haemorrhaging. this was a product of the hormonal implant however, i had remembered that PCOS (PMOS) was on my medical record from when i was 12 and maybe it was worth reinvestigating. i was immediately prescribed Metformin, which I had been on before when i was younger and it has some gnarly side effects. after a few weeks of this and discussing with my diagnosed friend, i thought it was bizarre that they were going off a diagnosis i had received when i was pre menstrual. i was so young that i had not even received an internal scan, of course my periods were not regular as i had barely even started having them. the road to getting re-tested was long, i was faced with doctors telling me that once i was diagnosed, i was diagnosed. that’s that. feeling entitled to know my own body, i managed to get a blood test and had to read the results myself which determined i did not have PCOS. i then argued my way to an internal scan as i felt that i deserved one, this of course came back negative. i have one ovary that is slightly, slightly polycystic. this still remains on my medical record to this day, and there has been no accountability for the harm that this mis-diagnosis caused me. i was given medication that was not for me, multiple times, and i was even told at 12 i would not be able to conceive a child. i was grieving a child i couldn’t have when i was merely a child myself with a diagnosis that felt too adult, too beyond me. as of yesterday, PCOS was renamed to PMOS — there is a chance that maybe i do have this as the criteria was different when i put it to bed a few years ago. i am glad the general conception of PMOS is changing medically as i am sure others have been harmed by the misunderstanding of this condition.

i am 27 and i am still sick. i have struggled in every single job i have ever had, i’m still fatigued in a way that never seems to regenerate and now my body hurts more than it ever has. i am finding it hard to get through my days with the body aches and joint pain i am experiencing. i have always tried to follow a gluten free, dairy free diet for my hashimoto’s but it can be exhausting doing this on my own accord so i find a nutritionist with similar lived experience. in our first session, i explain my aches and she listens. she then explains that she sees quite a few patients with hypothyroidism, and what i am explaining, is more than i should experience as someone solely with this condition. she asks me if i have ever considered fibromyalgia, to which no i have not. i do not know much about the condition but she implores me to look into it, things start to add up and i raise this with my GP. they issue me some blood tests and on the way to work, i receive a call. Gout. i am diagnosed with gout as a woman under 30, the medieval type of diagnosis that Henry the eighth is famous for. an inflammatory arthritis caused by uric acid linked to a lifestyle of beer, red meat and lavish living. this was a shock as i can’t say i feel particularly gout-y, i do not experience pain in my big toes but it’s my knees that give me gip. my nutritionist, lost, as what i was encouraged to eat for my thyroid now contradicts that of a gout-friendly diet. the absurdity quickly becoming that of comedy, i too felt lost in this new diagnosis and still have not received any help with it from my GP.

i am now 28, burning out from another job and unable to manage much more with the pain i am in. in February, i received blood test results that were outstanding. my thyroid results being the best they had ever been, but why was i still struggling? in chronic pain, chronically fatigued. i decide to book myself a private consultation in harley street with a consultant who specialises in fibromyalgia. unlike the endocrinologists who came before him, he listens to me and empathises. i have had far too many consultants shout at me, frustrated that i am not getting better in the way they would like. this consultant explains that he sees fibro patients daily, and what i am experiencing is just that. he told me that when i sleep, i am processing YEARS of pain which is why i wake up not fully rested. this includes emotional too so everything i have written, plays out whilst i sleep. the fact i have managed to obtain two degrees, have a successful career and live independently is astounding.

so here i am at 28 with another chronic illness. well, it could’ve always been there hiding behind my hashimoto’s, i wouldn’t know as i can’t tell where one ends and the other starts. i initially grieved as i felt i had been presented another roadblock, another hurdle that i do not have the energy to jump. but upon reflection, i now see it as as a better opportunity to understand myself, as a way to cope better, as a way to change my destiny. i recently went to a retreat which was wonderful and enriching. i met someone who had Hashimoto’s, and had conversations about chronic illness which i have never been able to have as i do not know anyone with lived experience. i spent the retreat in a significant amount of pain though as when i slow down, things catch up and i realised the way i have been living is not particularly viable. i work in a fast paced advertising role which requires me to work in office, show up for long hours and be reliable — things i find difficult as someone who is chronically ill and neurodivergent. i have always wanted to write but denied myself of any creativity in my youth due to feeling “not good” enough, but i am now connecting with the written word more as my brain is fast but my body is slow. i hope that this substack becomes a space for me to express myself freely and contribute to conversations about chronic illness, but more importantly, connect with those who thought they were alone like me. i thought i was going on the retreat for solitude, but instead found connection, community and kinship which is really the secret to healing.

XOXO gout girl