#opossums chronic illness rants

[caffeinatedopossum]

I feel like I have an unacceptably low level of control over my body. Like obviously there are some things that no one can control but I have like actual big problems because of it. I'm not really sure how to describe it but it's not just me being really clumsy (although that is an effect of it) or even the tics I have.

It's like I can feel my body moving wrong constantly but I can't correct it and it hurts and it sucks and I'm tired. I'm tired of hurting myself, making mistakes, breaking things, acting like it's fine when in reality I'm constantly afraid of how much any movement I make next could hurt me. I need to move to stay sane, I want to workout and get stronger and go on walks with my friends. I wanna get better. I can't even roll over in bed without pain and I'm just so tired.

#opossums chronic illness rants #seriously though this sucks so much and idk if theres anything i can do about it but i wanna try #its probably a combination of a lot of different things #like muscle weakness and instability from ehlers danlos syndrome both making each other worse #along with the poor proprioception from autism the dizzyness and weakness from the dysautonomia #the fact that i cant really see and even possibly inner ear damage (thats a new one that ive been suspecting more and more recently) #im not sure if the ear damage would be just from built up ear wax or maybe or something else #but im really not having a good time because it brings back bad memories #when i was a kid (8 i think) my mom was convinced i had compacted ear wax but given that she refused to ever #take me to doctors she decided she had to fix it herself #which led to a lot of excruciating trials where she stuck wires and que tips stripped of their cotton into my ears #and tried to scrape out whatever she could. even though i wanted her to stop because it hurt so bad i would start crying everytime #im also mildly suspicious that might be what damaged my ears in the first place... but i really have no way to know that at the moment #all i know is i dont want anyone looking in or putting things in my ears ever again #it doesnt even matter how much i trust them because now anything put in my ears hurt #like even when im just regularly cleaning them with que tips it hurts and im reminded that might not be normal #idk if you read these tags let me know if cleaning your ears is supposed to hurt i guess? #im honestly not sure. like i just always assumed i wasnt being gentle enough or something but it doesnt matter what i do #its not super painful either just a little bit so i ignored it because i assumed it was normal #since a lot of 'normal' things hurt for me. which i now know to my surprise isnt normal at all but i didnt figure that out #until i actually got people to believe that these things were hurting me #apparently its very hard to find anyom #who believes that opening bag clips or trying to lift a jug of milk are actually quite painful for me #they usually just say im way overreacting and when i was a kid i just believed them i guess

[moss-opossum]

When I say "I would theoretically be interested in this activity, but I can't do it, my disabilities make it very difficult" and people try to be helpful by making half a dozen recommendations (not accessibility recommendations, just general advice), it shows they really don't get it.

If I desperately wanted to do that activity, yes, some of those suggestions might help. But I am not passionate enough about this one hobby to dedicate time, energy, and other resources to crawl my way towards proficiency in it (especially if it costs money or I would need to travel to do it!!!), and simultaneously deal with everything else I genuinely need to do (these actually necessary tasks are also exhausting!).

Additionally, at the end of the day, I would still struggle with that hobby, and that can be super disheartening for me. I don't think any of that should be expected if it's not something I want to go through.

I get that these people are trying to be helpful, but I often end up having to argue with them because they’re holding me to a standard that I cannot reach and don’t want to wear myself out for.

Disabled people absolutely can engage with hobbies that are difficult for us, but we should not be expected to force ourselves to do activities that push our very real limitations if we don’t want to. Asking us “is there a way we could make this more accessible?” is great, but please do not push us if we ever tell you “no” for something. We’ve likely already thought about it by the time we say no.

#moss-opossum #rant #disability #chronically ill #chronic illness #autism #neurodivergent #disabled #physically disabled #dyspraxia #actually dyspraxic #actually disabled #autistic

[moss-opossum]

The occupational therapy intake went horribly. The OT kept remarking “how much I have going on” (how much is wrong with me), and said she didn’t know what to do with me. When I told her I am very isolated, and want to go out for more than groceries and doctor visits, and to be able to work, she said I should “just work from home”, accompanied with some implied prejudice against intellectually disabled people. At that point I felt like I was going to cry.

She thinks I’m already at my functional limit and “doesn’t want to add more” to help me improve?? Even though that’s her job?? She indicated that she would ask her colleagues what they think we can work on and would discuss at the next appointment, but after that kind of unprofessional treatment, I don’t want to go back; I’m canceling all my scheduled appointments with the practice. I’ll look for another OT I guess.

#moss-opossum #disability #chronically ill #chronic illness #disabled #physically disabled #chronic pain #occupational therapy #ableism #rant #kind of a vent