#pot syndrome

[havegaysex]

I'm having a wheelchair fitting on Friday

Then it's 3 months wait till I get it if all goes well That means that by the time fall rolls around I'll be able to go leaf peeping with my friends on like those really long nature walks. And I can go to the botanic gardens in Denver and I could probably get a library pass for the Denver museum too. I haven't been to a lot of museum places in a really long time because before I got a mobility aid at all when I was trying to push through as a high schooler I almost passed out at the botanical gardens from the pain so I found a bench in the sun to lay down on and claimed I had a migraine because that was the only acceptable form of disability around my dad and now I can go as an adult with a friend or a partner and not have to worry about pain or low blood pressure.

[agendergenderqueermasculenbyguy]

I plan to make electrolyte popsicles (again)

Yay orthostatic dysregulation

[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.

[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

[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”)

[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

[jenacat8-blog]

Being neurodivergent and chronically ill is crazy because you already have issues with executive functions and then your body hinders you even more. AND your sensory issues are heightened by the pain you feel.

[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).

[p0is0n-is-th3-cur3]

Having dreams crushed by disability is such a deeply traumatic experience, the realization that you’ll never be able to do the thing you want most in life because your body isn’t able to handle it. Waking up the day after you received the news and feeling that utter sense of heartbreak in your chest. Watching people go on and do those things while you sit on the sidelines, forced to watch bitterly. That feeling of being trapped, imprisoned by your inability to do what you love. The grief, the anger, the sadness. All because your body doesn’t allow you to.

[potsiepumpkin]

Useful information

[teacupbug]

My controversial opinion is that I think chronically ill people should be able to fight one doctor a year

[i-the-spoonie]

[spoonfulofhannah]

Fatigue feels like you have sandbags tied to your feet while trying to walk. It feels like you haven’t slept in weeks. It feels like gravity is pulling you down. It feels like cotton balls are in your head, clouding everything.

Fatigue is NOT the equivalent to being tired.

[spookietrex]

[chronicallydragons]

Anyone else with chronic pain ever get really absorbed in a project and dissociate from your body while you're working but then you finish and you come back to your body and you're just like AAAAAAAHHH! WHAT'S WRONG?? oh yeah. The horrors. Never mind