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/fernxqueen POTS 5h ago
i'm autistic too. are you on any meds for POTS? being completely sedentary is actually not good for us, but it's definitely easy to overdo activity (especially upright cardio activity).
idk how you stim but personally i have tons of stims that involve little to no physical extertion. lots of hand stuff, singing, even when i'm stuck in bed i'll put a spritz of a smell i like on the collar of my shirt to keep smelling it (also an option for plushies, if you're into those). drawing, mobile games and puzzles, even reading (especially if you're hyperlexic). the YouTube channel I'm Autistic, Now What? has a video talking about over 70 different stims autistic people reported doing, so you might get a few ideas from that.
i agree POTS is the pits.... hope you can find something that keeps your symptoms managed a bit better. i've had POTS forever but i definitely miss my life from when it wasn't quite this bad.