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“it’s getting bad again”: the first line of a poem I write, curled up in a heap on my bed, at the start of March.
Although I’ve been diagnosed with Hypermobility Spectrum Disorder (HSD) for a few years ago, and have largely accepted that as my reality, I have a much more turbulent relationship with its common comorbid condition, Postural Orthostatic Tachycardia Syndrome (PoTS). PoTS causes a wide range of symptoms upon standing like tachycardia, dizziness, fainting or near-fainting, and fatigue, and it is significantly worsened by heat. For this reason, my PoTS was largely controlled, except for in the summer, until last year. The definition of ‘summer’ kept creeping to encompass more of the year, but it wasn’t enough to shake me from my merry denial.
Not much was, despite my friends’ best efforts, until my first summer at university. Some combination of the usual support falling away with independent living and my body’s steady decline meant that I was finding myself floored – sometimes in the most literal sense – in the middle of March. This wasn’t unlike what I had experienced before, but it was a new level of severity. Away from home, my ability to keep myself fed and clean, and my room tidy, were beginning to fall away.
That March and April are pretty blurry in my memory. Glancing through my camera roll and BeReal memories gives a picture of fragility: lots of time spent horizontal, electrolytes and hydration, comparing the salt in different foods, and desperate research. My medical records show a similar picture: a month with that many snacks cobbled together to make ‘dinner’ when I could hardly leave my room left me with multiple nutrient deficiencies on blood tests. Don’t get me wrong, there were good moments – I ran a fundraising event (in hindsight, I have no idea how), I finished that term of my degree, and read some excellent books – but at the core of it all, I was utterly terrified.
It wasn’t my first big flare away from home. The pain flare from hell, as I call it now, of the previous November had tested me significantly, and I spent lots of that time glued to my electric heat pad, hobbling with a crutch, or wincing as I chopped vegetables. But that had been different, somehow, and the fatigue hadn’t cut so deeply into the fibres of my being. Or maybe, there was more of an end in sight. I knew that every other pain flare I’d had hadn’t lasted longer than I could bear, knew the meds I was on were still working pretty well. Last spring, all I knew was that my PoTS couldn’t be medicated without seeing a cardiologist, and that wait list could take months and months. It was up to me to get myself there, with a long summer of fuzzy vision and pounding heartbeats stretching out in front of me.
The fact I am writing this is testament to the fact I did, somehow, keep myself going through that time. The worst of the PoTS lifted, I found electrolytes that didn’t taste too awful and invested in yet more compression garments, and wobbled my way through it. I finished the first year of my history degree with a grade that pleasantly surprised me, and a planned-but-unnecessary exam resit option in my back pocket and enjoyed a summer of flexible working on an internship I absolutely loved, alongside lots of LUNA shenanigans. When I received confirmation of my cardiology referral, I rejoiced: after so much denial, I had finally done something to ensure this would be the last summer I spent in a dizzy heap. I’d go as far as to say that it was one of the greatest summers of my life, on balance.
The summer of 2022 taught me a lot of things about me and this body. It showed me the depths to which my chronic illnesses could take me, and how absolutely terrifying that loss of control felt, more than any flare or health problem had before. I think those long, weary days, and all the hours I spent trying to gather enough energy to stumble ten paces to the kitchen, will haunt me for a long time to come. It also showed me that, despite everything, I could not only drag myself through a difficult time, but find so much joy amongst all the difficulty. I am immensely grateful to all the friends who listened to me cry, cheered me on as I advocated for myself at the GP, and kept me company while I laid on various floors – it is because of them that I can tell this difficult story with a smile on my face.
“it’s getting bad again”: the first line of a poem I wrote recently, which echoes the feelings I felt last year, with a new kind of depth. Last year, I was terrified of the unknown, all the things I couldn’t predict or stop. This year, I’m scared of the train speeding towards me: I know exactly what’s coming, and there isn’t much I can do to stop it.
Having had a tilt table test, I’m still waiting on the cardiology appointment to formally diagnose my PoTS and medicate it. From what I’ve been told, it might not be until much later in the summer. Until then, I cannot trust that my body won’t reach those same depths it did last year, that I won’t once again be marooned in a heap on a bed or floor. I’m not going to lie and say the likelihood of this doesn’t terrify me, because it does, but I approach it differently now. I’m well stocked on electrolytes and easy, frozen food. I’ve cooked as much as I can manage now, so I only have to reheat it later. I’m better equipped with the language to explain my situation to my university lecturers, employer, family and friends. I am doing absolutely everything I can to mitigate what feels inevitable, and for now, I will have to trust that it is enough. On the occasions where it isn’t, my loved ones will catch me when I fall, literally or figuratively. I have faith in that, and in my body to try its hardest, and on the hard days, I cling to those. On the good days, I pull on my obnoxiously bright compression socks and dance wildly around my kitchen while cooking dinner.