no official dx (yet), but i have a happy moment to share!
hey yall! as title says, no official dx yet, but i have all the makings of POTS, esp the hyperadrenergic type (MCAS might also be at play, and i also have a working dx of hEDS and migraine disorder.) but i had a new success today :)
as the weather gets warmer my body has been less and less forgiving. while im stronger than ever in terms of muscles and joint stability, my stamina is getting lower and lower due to POTSy symptoms. summer is always hard for me. in the cooler months, i have good luck with upping salt and water to about 5L a day w/ abt 1000mg sodium per liter, rollator or cane when life is rough, and sometimes compression socks, but lately it hasnt been enough.
but today i took a wheelchair i bought of FB marketplace last summer but never used out for a spin at the arcade with my best friend and man! it felt like i could have gone for miles, and was even able to recognize i was getting overstimulated and needed to go home before i started having a meltdown because my heart wasnt going crazy and i have all these awful sensations and fuzzy brain feelings. i was able to be in touch with my body, instead of zoning out and dissociating in order to keep upright and walking and all that. my energy went to having fun, not keeping my balance.
i got the chair when i got my first serious EDS related injury, the one that kicked off the diagnostic process, but denied myself the benefit of using it because "i CAN walk, im not *technically* a fall risk, ive never ACTUALLY fainted" etc etc, all the "im not disabled enough" type feelings. but tosay after therapy i said fuck it. who cares. my body has been telling me for months that it needs more help than its getting, and ive been refusing to listen, and now im suffering for it (good therapist, shes autistic and trans like me, and chronic illness and trauma informed! she actually has an academic interest in therapeutic outcomes of chronically ill patients, and does a lot of somatic approaches and stuff).
so i used the chair. and it worked. i checked my pulse through out the night-- pretty constantly 85-90, which is where it is when im sitting upright. i didnt feel my heart thumping in my chest at the speed of light. and i couldnt stop telling my best friend how happy i was, how much more clearly i could think, how little the arcade overstimulated my silly autistic brain compared to normal. its right wheels are a bit sticky, but besties gonna bring round the wd40 and the wrenches to figure out whats making it glorbly tomorrow, and i def need a lumbar cushion which ive now ordered and am waiting on. but im just really happy. because i didnt suffer on a night out with friends for once in my goddamn life.
obviously i will not be using it when i dont need it, like in the morning or for shorter times/distances, or when its cooler out, as i do NOT want to decondition myself. but for longer outings, especially at night when im already tired like today, i think its worth it.
if you have similar success stories, pleas share in the comments. if not, or if youre wondering if its time to start using an aid, take this as your sign to say fuck it and try one out.
tldr: finally allowed myself to use a wheel chair instead of ignoring symptoms and denying the reality of my disability. worked wonders. 10/10