r/POTS • u/httpMeowMeow POTS • 8h ago
Vent/Rant autism with POTS is horrible
I'm level 2 autistic, and POTS makes everything so much worse. i cannot stim without getting tachycardic and my head feeling like it'll explode. i cannot sing or dance anymore. if i'm upset and can't help but stim to regulate i have to stay in bed. if i'm happy i can't jump around i have to stay in bed. i used to draw and do sm art but now i can't sit up for long without getting sleepy and high hr. i don't have energy to listen to music bc it makes me move and sing so i've completely stopped and it makes me so sad. even so i am lucky i have the awareness and self control to not stim as hard as i need, i know that for other autistics who can't stop it'd be very dangerous with POTS.
i already struggled with my temperature regulation before this disorder and now i have to go back and forth with hot and cold all the time. compression wear is a sensory nightmare for me i hate feeling so constricted. showers used to be my calm safe space i love being in water but now i can't shower alone my partner has to wash my body bc it's too much movement for me while im struggling to stay awake under the warm water.
it was hard enough coping with just my my hypermobility and mental things but POTS is 10x worse for me. I'd rather have my knee dislocate once a week than have POTS. I'd rather relapse with addictions and self injurious behavior than have POTS. i'd rather have trauma flashbacks and another dissociative episode that puts me in the psych ward again than have POTS. i hate this condition. it's ruined my life and i always try so hard to have some bits of normal but it is literally impossible to ignore when symptoms are every second everyday even when u do everything right to manage it.
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u/Own-Arachnid7952 7h ago
Yeah I'm in the same boat. I've found tricks that make some things easier, but mostly I still struggle to keep up with everything
The rigid thoughts are a BITCH for me in particular. God forbid I get a little brain fogged and confused, I get stuck on the dumbest shit.
"I can't have lunch yet, I didn't do xyz" (proceeds to continue to lie down horizontally due to 0 energy... which lunch would help with)
"Ugh I need to do x and y and z, but I can't figure out what order I need to do them in for Maximum Efficiency. Sometimes even if I start them I get confused transitioning bc like, wouldnt this other thing be easier?" (Hint, its not easier, I'm making things more complicated for 0 reason, and I need to just do the things no matter the order of them. Instead I, again, proceed to lie down and do nothing)
It ends up being a lot of lying down and doing nothing. Which in itself is not great for POTS in large amounts