#chronic community

Every evening for the past week, I suddenly get an almost violent migraine-like attack, that lasts from 2-5 hours, and then abates. I feel nauseous, my head feels like it’s going to burst, my chest burns and every sersory input hurts so so bad. It even gets a little hard ot breathe, and I have to put on my cpap just to feel like I’m getting enough air. It’s so new and terrifying, and I don’t know what to do :((

I’m so tired of my own mother not taking my health seriously. Shes my sole source of income right now, and she uses it to get me to move heavy objects (I have mystery weakness in my legs and back) clean out dusty rooms (Ive recently developed some moderate asthma) and be my older siblings caretaker (I have chronic fatigue to the point where sometimes simply sitting up is too much) . Don’t forget tricking me into eating food I’m allergic to, and guilting me about medical costs!!!

I wish I wasn’t so dependent on my amazing partner. For so long I’ve been in excruciating pain, and all the things that come with that. But I don’t want someone to do everything for me, I like to do things myself and sometimes the most frustrating thing is to want to be free, and to feel like chronic pain and disabilities are just chains holding you back from living the life you want to live.

I feel like I am using my chronic illness as an excuse to for doing bad at school but it really is hard for me. I’m working to get accommodations for the first time and I think they will really help me but my friends and family just think that it’s cause I don’t want to do the work all the time. Why do I feel guilty for trying to get accommodations? I know I fit the requirements for them and I’m not just doing it for the sake of fucking around.

I have this intense chronic pain, muscoskeletal, I don’t have a diagnosis yet since I live in the province and everyone is like “ohh, actually I don’t know what’s wrong with you, there’s something wrong though thats for sure.” Anyway I literally just realized this month, that not walking on my hurt leg or not carrying anything with my hurt arm and supporting them makes them hurt less. Like, this sounds absolute common sense but I never tried or realized it since I didn’t want to look like a limping fool and everyone always told me quite literally to walk off the pain. So baffling.

I don’t even know how I manage to look normal while in extreme pain.

I’m always afraid I’m over sharing in my disability lit class, but it’s because nobody else has explicitly identified as disabled. Nobody in my class uses mobility aids, and a lot of people seem to assume that everyone in class is abled. So screw it, I’ll use myself as a case study and go off about the treatment of invisible disability if I dang well please.

I can’t handle extracurricular activities anymore and it makes me hate myself. I just want to be normal.

5467 here. I’ve scheduled a doctor appointment. No, it’s not an emergency. I just decided I shouldn’t have to live like this. I would want a loved one to get care if they needed it. If a loved one felt like I feel, I would drive them to every doctor it took. So I’m going to prioritize my health the way I would want someone else to.

they always make me feel like shit for taking a break like i took a weekend with no exercise for the first time in over six months and my mom yells at me because she says im going against doctors recommendations even though she knows how much pain im constantly in. ive told her time and again that im only getting worse and she wont let me change what im doing, i blacked out in class the other day because i havent taken a break in so long. i dont know what to do. no one ever tells me theyre proud

Another birthday is another reminder of how much my chronic conditions have derailed my entire life. They’ve robbed me of pursuing anything I once dreamed of. I HATE my birthday. 15 years ago, I never thought I’d feel this way.

I have a billion allergies, even more intolerances, textural issues, and even more issues with food. And to make it worse? I have an ED. Eating is a minefield and I just want a break so bad, but I can’t because if I’m not hyperaware I’ll die, but when I am hyperaware it worsens the ED and is extremely exhausting. For once I’d like to see ableds actually think about the consequences of their actions for disabled ppl when it comes to food and food service and “free food” at meetings and events

I’m glad my high school didn’t do a ten year reunion because all I’ve accomplished this decade is not dying, and I wasn’t even very good at it.

How many times can I say something’s wrong and that I’m in pain before I’m heard? Teachers, therapists, friends, they all agree and suggest I go to a neurologist or rheumatologist but my mother insists I’m just inactive and need to exercise more– even as I’m so fatigued and in so much pain that the two miles home from school leave my legs in so much pain I can barely bend them without wanting to cry. I’m just given vitamin d pills and iron pills because she swears I’m just deficient, even as my migraines last 4 days and are so bad I can’t open or close my eyes– the light hurts and my eyelids put too much pressure on the eyes.

But sure. It’s normal. I’m dramatic, even when I’m so fatigued I need a brace to keep my hands up because they’re just too heavy and I haven’t been able to do schoolwork or hobbies at all.

I wish she’d listen to me so I can find out what the hell is wrong with my body. I just want an answer and help, why can’t she stop blaming me for it and start helping me.

If only I could blackmail, punish or sweet talk myself into doing The Thing (Of which there is a bakers dozen), but sometimes my brain is like no, your sitting on your bed, and feeling unsatisfied and unheard and not doing it

Smeone on here said “Signs of many serious medical events are also just part of my normal life” and if I did get one of those things happening I would not be even to tell or be taken seriously if it was

Between my terribad pitches and my executive dysufunciton its miracle I get anything done, ever ever ever, I wrote a list of all the things I hit a wall at even when I am 100% certain it would do be good to even start to do, like even when I beat down my anxiety, I get all “But how” about a dozen things I either used to be able to do or have curiouisity about trying or would make my life easier et fucking cetera

I’m having to jump through a bunch of hoops in order to get accommodations at work so that i can actually work successfully. But jumping through those hoops is so mentally, emotionally, and physically exhausting that I’m running out of energy to both jump and work, and instead I feel like I’m just failing at everything.

So my IBS has reached a new level. I’m so embarrassed it’s awful. I pooped my pants! Luckily it was in the middle of the night at home, so no one knows but me. I still can’t seem to get over it, and now I’m super paranoid that every gas bubble (which with my IBS, there is a lot) will result in the same thing. I just keep hoping that it was a one time freak thing but idk. Do I need to bring this up with my doctor? Does this mean that my IBS is getting worse? HELP

[ID: Photo is a tweet from Wonder Cripple (twitter handle: @wonder_cripple). The tweet reads:

“When an abled person tells you you’re an inspiration, ask them why. Seriously. Ask them, and watch them rack their brains for an answer. They’ll understand the problem when they can’t come up with one.

I have done this before. It works.” END OF ID]

Real Talk: Abled people view disabled people as perpetual children. Change my mind.

ID: [Photo is a tweet from Wonder Cripple (wheelchair emoji) Twitter handle: @wonder_cripple]

The tweet reads:

Stop blaming terrible behavior on mental illness or disability. I don’t care who you’re talking about. I don’t care if it’s @realDonaldTrump or a school shooter. It’s fearmongering, and IT WOULDN’T EXCUSE THEM.

[END OF ID]

For anyone who’s interested, feel free to follow me on Twitter so we can talk activism on there too!

(reply or reblog with your handle so I can follow you back!)

@wonder_cripple

My faith in humanity died the day I had to explain ableism to a psychology professor.

Inpired by a social media post from @brightlotusmoon:

Just so you know, lacking focus or motivation does not make you lazy.

If you’re disabled and people claim to be inconvenienced by you, it’s not your fault and you’re not the problem.

lol @ how abled people park in disabled parking spaces, but have the audacity to scream at ambulatory disabled people for doing so because “that space isn’t for you!”

Your hypocrisy is showing, Karen.

Abled privilege is being able to do something or go somewhere completely spontaneously, without having to plan everything out three weeks in advance or make a million contingency plans.

Chronic pain is real.

Chronic fatigue is real.

Fibromyalgia is real.

Ableism is real.

Vaccines do not cause autism.

This has been a PSA.

Fellow disabled people, what does a good day look like to you?

I’ll start.

Today is a good day. I woke up happy to be alive and my pain level is at a 5 on a 0-10 scale.

Stop trying to make disabled people feel bad for being loud and assertive about their needs.

We do not owe you simpering kindness or meek pleading in exchange for access, and you have no right to deny us just because you think we’re “rude”.

Here’s a little experiment:

I want y’all to map about exactly how you think disabled people are supposed to live on $800 a month with a $2000 overall limit on our accounts at any given time.

Think about your most foundational, basic expenses, and explain to me how this makes any sense.

I’m waiting.

Why I will never be on board with the bullshit rationale for reopening schools right now.

I “needed to be in school”. They didn’t care.

My pediatrician had to write a letter for the school to grudgingly let me come back.

If you can kick up such an ableist fuss over a broken leg, you can keep kids and teachers safe during a deadly global pandemic. End of discussion.

Photo is a tweet by @wonder_cripple that says:

“When I was 12, I broke a leg. My school *insisted* my mom keep me home until it healed because I already needed 24/7 care as a disabled person. They labeled me a liability.

And you’re telling me schools are fine to open during a global pandemic?

OK.”



[ID: Photo is a tweet from Wonder Cripple (twitter handle:@wonder_cripple). The tweet reads:

“Please remember that accessibility means different things to different people.

I might need a ramp.

My blind/VI friend might need a transcription in Braille.

My deaf/HoH friend might need to lip read or use ASL.

Our needs are diverse. Respect them.” END OF ID]