I have POTS too, as well as scoliosis and OCD - Obsessive Compulsive Disorder!
The scoliosis technically isn’t a a disability, as the spinal curve has to be at 30 degrees for it to count as one, but I got diagnosed at 26 and last time they checked it was 29, so…
It affects my ability to sit, stand, or even lay down for extended periods of time, causing discomfort and a fair amount of pain if I don’t shift positions every couple of minutes.
Now over to the POTS- I also struggle with drinking enough water (I’m probably dehydrated but that’s neither here nor there) and getting enough sodium. My doctor advised to buy salt pills, which I think have been helping. Also I really like salt, so I don’t mind putting extra on my food. Back when I was younger, I used to eat straight piles of salt… there may have been signs
Fatigue is a BITCH. I’m tired literally all the time. I can literally sleep for 12 hours, stay in bed all day, sleep another twelve and wake up exhausted.
My vision blacks out any time I stand up after sitting for over 10 minutes (sometimes less), but I’m also lucky enough to have not fainted!
I can still do exercise and physical activities, but man does it take it out of me. I do dance twice a week, and in one of my classes it’s fairly normal for my vision to black out around 5 times in the last fifteen minutes, and it takes about twenty minutes after class ends for my breathing to fully return to normal.
Speaking of which, sometimes my body randomly decides I shouldn’t be able to breathe, so that’s fun. No pattern that I’ve discovered yet, but it hasn’t made me pass out yet so it’s on the back burner
My body is also really bad with temperature regulation; I’ll frequently overheat or get extremely cold out of nowhere, and I can’t stay outside for long periods of time when it’s hot (or in general… every reaction my body has to the outdoors is negative. Sunlight makes my skin itch and eyes burn, even if I have them closed and I’m in the shade on a cloudy day).
As for the OCD: I’ve gotten a better handle on it over the past couple of years, but it used to be really bad.
My main obsessions were evenness, cleanliness, and safety. The compulsions that grew from that were:
Evenness — making sure I touched everything an equal number of times on each side. I bumped into the doorway with my right shoulder? Now I’ve got to do it with my left too. And then both again. And again. I particularly like sets of four and eight, so it would go something like right-left-left-right left-right-right-left left-right-right-left right-left-left-right. It also affected my breathing, as I had to make sure I inhaled and exhaled the same amount. Think of it like there’s a line that marks when you’ve breathed out all the way (not uncomfortable, but to the point where you would usually take another breath). For every amount over that line that my inhale took me, I had to exhale that much further under the line. Basically, I would be breathing out to the point of extreme pain in my lungs/chest from lack of oxygen.
Cleanliness — if I had to sit or lay on the floor for some reason (for example, at dance, but this was the case for any floor), it would send me into a near panic attack until I could take a shower and scrub myself off. The main issue was hands, though. I’d spend on average probably about 20 minutes washing my hands every time, and I scrubbed them so hard and so much that the skin would break open and bleed every day, no matter how gentle I was with them otherwise or how much lotion I slathered them in at night. It still now takes me around 5 minutes to wash them, but hey, progress
Safety — I was constantly convinced that my parents were going to die every time one of them left the house. I’d cry in my room after they left because I was sure it would be the last time I ever saw them. I always had to make sure the last thing I said was that I loved them, or they would die not knowing how much I cared. The other thing, which I still do to this day, is quadruple checking the locks on all the doors before I go to bed, as well as checking behind doors, furniture, in the stairwells and inside of closets (anywhere big enough for a human to hide) to make sure everything was normal. I can’t even close my eyes at night if I don’t do this, and sometimes I’ll get up to redo the whole routine if I felt like I didn’t do a good enough job earlier.
Anyway thank you for the tag!! Sorry it took a few days, I knew that I’d need to do this sometime when I had a while to sit and write everything out (this took about 40 minutes, lol-)
Absolutely zero pressure, I know this is a deeply personal thing for a lot of people. However, should you want to, I’m more than happy for anyone, whether we’re mutuals or not, to reblog and share your own story!!
@stxrfiish (I don’t know who my other chronically ill/disabled moots are… sorry gang, I swear I love you ToT) + the openest tags you’ve ever seen
Happy disability pride!!!
