#(POTS)

[yellow-dress-basil]

Hey can someone with POTS explain what its like?

I’ve always dealt with dizziness on standing. Its usually manageable, almost like a little vision shift, but sometimes its BAD. Like I’ve fallen into walls when I get out of bed in the morning or had my vision black out most of the way. I kinda thought that just like, happened to people? But I recently have had it brought to my attention that it maybe doesn’t?

I’ve never passed out, but I think I’ve gotten close. Like blacked out vision, weak knees, etc.

I can often feel my heart pounding against my chest and can almost always hear it or feel it somewhere in my body.

Is any of that normal person stuff? Or should I book an appointment with my doctor?

(If it helps I have a lot of thus far unexplained digestive issues, chronic fatigue, ADHD, and Autism)

Please know I’m just trying to figure out whats wring with me and not make any assumptions about POTS.

Thanks everyone!

[blooming-lenses]

pots

2024/09/02

[lupusbaby]

I’m so happy my forearm crutches have arrived! I love them so much :,)

[sebs-out-of-spoons]

disabled and chronically ill peeps, gather please for just a second and listen to me ramble

last night, after my seemingly incredibly long shift at work (about 5 hours long), i asked my sibling (He/She) what her pain was at on the pain scale (going from 0 to 10, 0 meaning none and 10 meaning the worst).

his response “about a 2”

i wanted to cry

mine was around a 7, leaning on 8, and had been all day cuz my body has been hating me extra lately for zero reason

my BASELINE, what i am at when i’m chilling and relaxing, literally just where i start from, is at a 4

i told her this and we laughed and i cried some cuz i cannot believe that his pain is at a 2, not even at my baseline, after 5 hours of running around and doing tons of jackshit

and i then asked what his pain is at just normally, just her baseline

GUESS THE FUCK WHAT?!!?

it’s a 0

ZERO, PEOPLE, ZERO

so people really are just existing without pain? so people really can do 5 hours of work and feel barely any pain? so people don’t become more in pain drastically when we walk a lot, or when we do literally anything??

my brain honestly is in denial that her pain was only a 2

and i then asked him how long he was gonna be at a 2, annnnd guessss what? she says it’ll be at a 2 until after she’s rested a bit, then it’ll go back down to a 0 again

it’s the next day, i’m at a 5, leaning towards 6, who knows if that’ll change, and i am absolutely fatigued and exhausted

he’s going out on a date with her boyfriend, and they’re going to a bunch of places

i just want to sleep all day long and literally do nothing

i want to cry so much, but yeah, just so we’re all clear, literally able-bodied people were not lying, their baseline is at a 0

*lays on floor and sobs*

[thexie-and-stars]

saw someone say that pots is so fucking nonsensical, like she keeps a pickle in her bag and that stops her fainting, and this is soo TRUE!

Like, I keep soy sauce packets on me at all times and when I feel dizzy I just drink them and I don't faint?!

pots is so fucking wild

[chroniclesofchronicillness]

This makes so much sense

[vtk13]

“slut era” i whisper to myself as i rot in my bed, sick like a frail victorian child

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizontal, but I need more horizontal. I need to be absorbed by the floor. I think that would fix me

[mybodychoseviolence]

“surely this will not cause my chronic illness to flare up,” i say, actively doing something that has never failed to flare my chronic illness

[i-the-spoonie]

[little-pissbaby]

fun fact about me! I have hyperadrenergic Postural Orthostatic Tachycardia Syndrome (hPOTS). this means I am prone to fainting when I change positions or when I feel a strong surge of emotion, positive or negative. for me, laughing is my worst non-postural trigger.

this is a clip from playing lethal company with friends a few months ago. you can hear the eerie silence of presyncope at 0:19, and the sound at 0:23 is my face hitting the keyboard lmao. I played this for my mother and she literally pissed herself laughing and DEMANDED I show every single person I know (including my doctors, who thought it was funny to see and surprisingly helpful, especially for being audio only).

[certifiedgoofball]

i hate when i, a completely healthy person (very chronically ill), get sick (flare up) for no reason at all (i exerted myself way past my limit just cuz i didn’t wanna be “annoying”)

[lupusbaby]

Some people don’t want to hear this but sometimes accessibility is not sustainable or eco-friendly. Disabled people sometimes need straws, or pre-made meals in plastic containers, or single-use items. Just because you can work with your foods in their least processed and packaged form doesn’t mean everyone else can.

[spookietrex]

[disabled-bug]

I’m so proud of people living with chronic health conditions. That shit is HARD. Idk who needs to hear this, but if no one else has said it: I’m proud of you. You’re sticking it out through so much pain and grief. That’s no small feat.

Every small thing you do for yourself health adds up. The grief is heavy and it comes from a place of love. The grief knows the pain is wronging you.

I’m proud of you. I hope on the good days you can be proud of yourself.

Keep going.

[stellaltumi]

stop villanizing disabled people. stop assuming we're just being lazy. stop assuming we could be trying harder. stop assuming that we'll "feel better" in a few weeks. stop assuming that we have the same energy levels as everyone else. thanks for coming to my ted talk.