tryingmybestbutyknow

[tryingmybestbutyknow]

LMAO My rheumatologist made me circle the places and it ended up looking something like this…

When I try to make a list of all the places I feel joint pain and ended up listing EVERY FUCKING JOINT?!?!!

Anyways I'm scheduling a follow up with my doctor gdhdjsj

#chronically ill #ouchie posting #chronic pain #joint pain #joint problems #possible hyper mobility?? #pots syndrome #potsie

[tryingmybestbutyknow]

I caught a bug. But I lived!!!

It took a two Tylenol, two Motrin, and a Muscle Relaxer. But I lived!!!

#chronic pain #chronically ill #joint pain #joint problems #pots syndrome #potsie #sickness #possible hyper mobility??

[tryingmybestbutyknow]

Question of the week: what is the most unhelpful thing a person has told you about your illness/disorders?

My answer:

“Just don’t go to sleep.”-My old doctor when told I was experiencing really bad fatigue.

#chronically ill #chronic pain #chronic fatigue #fibromyalgia #fibropain #potsie #pots syndrome #possible hyper mobility?? #disablility #question of the week #joint problems #joint pain

[tryingmybestbutyknow]

disabled people are allowed to have hobbies that clash with our disabilities by the way

I'm allowed to like journaling even if my hand tremors make it so I can't do something as "pretty" as an abled bodied person

I'm allowed to like crocheting even if it's bad for my joints and it takes me double the time it would take someone else to finish a project

and yes I'm trying to switch to knitting which is lighter on the hands, but even that - even fucking using my phone - makes my finger hurts

I'm allowed to complain about it, just like you - specially if you're abled - are not allowed to tell me off about it

it's so hard for us to find joy, you're not allowed to police the small things that help

[tryingmybestbutyknow]

the way that no one wears a mask at my local LGBTQ clinic, and in fact comments on my mask like it's just this hilarious little idiosyncrasy that I still wear one and not because I'm immunocompromised and we're in the middle of a pandemic ... as if there isn't an airborne virus that literally fucks up your immune system ... as if we didn't lose a generation of queer people to another virus that fucks up your immune system ...

[tryingmybestbutyknow]

Sometimes being disabled is metaphorical tunnel vision. For every small action, there's pain and fatigue on the other side, so you overthink and procrastinate every move you make. You put on real shoes instead of slippers for the first time in 6 months and wonder if it was always this hard to tie your shoes? You're not sure exactly what's different, but you just remember it being... easier.

At a routine appointment, your doctor lectures you about deconditioning instead of ordering physical therapy or diagnostics for your worsening neck pain. You can try again in 4 months.

You look up deconditioning later, but all you can do is wonder why they haven't come up with a term for a disabled person acclimating to their severe pain and limitations to the degree that they can't even tell exactly in what ways their disability affects them anymore.

[tryingmybestbutyknow]

One of the questions I had to answer for a job application was “is your disability a visible disability” and like… I don’t know?

Is it visible when I’m flaring up and walk severely hunched over in pain? Is it visible when I have to sit down on the ground in public? Is it visible when I’m sitting on the ground and using my heart monitor? When my face is completely covered in a rash? What about when it’s my hands? What about when it’s my arms and legs? What about when I wear clothes to hide it? Is it only a visible disability in the summertime? What about when I’m popping pills in public? When I open my bag and you see that it’s half full of medication bottles?

When it’s most visible is when I can’t leave the house at all, when I’m in the fetal position on my bathroom floor unable to move. Does that mean it’s invisible because only my parent and my Roomates see me like that? Is it audible if it’s only them who hear me throwing up?

I don’t think the visible/invisible dichotomy is always as black and white as people make it out to be. Especially for people with dynamic disabilities.

[tryingmybestbutyknow]

Has anyone used compression to help with leg pain (or any pain really)?? I'm thinking about getting compression socks because literally nothing helps except for pressure. The only issue is that the pain goes up to my thighs, and most compression socks are knee-highs :(

[tryingmybestbutyknow]

notes for my impostor syndrome:

• no, it's not painful to walk for abled-bodied people

• no, healthy people don't usually use every chance they get to lean against walls or sit down

• no, ableds don't dream about shower stool

• no, ableds don't celebrate days when they're not in pain. because usually they're not in pain

• no, ableds don't want to stop walking mid-way, lay down on the ground, curl up and cry and whine from pain

• no, ableds aren't exhausted by their own bodies 24/7

[tryingmybestbutyknow]

Thinking about how I never mentioned my joints popping to any of my doctors cause I thought that was normal (cause it’s happened since I was a kid) but maybe I should have…

#chronic pain #chronically ill #chronic illness #should i be concerned #??? idk #i honestly don't know #joint pain #joint problems #pots syndrome #potsie #possible hyper mobility?? #i did laundry yesterday #my wrist still haven’t #recovered