#tw: chronic fatigue

[blitzsicedcoffee]

The mind numbing anger of chronic fatigue is getting irritable because you're so fucking tired but you really feel like you SHOULDNT BE.

You SHOULD be able to sit at a desk and do work. You SHOULD be able to just watch a freaking YouTube video. You SHOULD be able to just eat fucking lunch.

But you can't. Because your eyes are closing and it's like temporary death is taking you.

[vm-sys]

shout out to clumsy people.

shout out to people with coordination issues.

shout out to people with dyspraxia.

shout out to people with apraxia.

shout out to people with muscle weakness.

shout out to people with paresis.

shout out to people with paralysis.

shout out to people with arthritis n/or joint deformities.

shout out to people with chronic pain whose pain makes it hard to control their movements.

shout out to people with chronic fatigue whose fatigue makes them hard to control their movements.

shout out to people with balance issues.

shout out to people with other conditions that make hard to control body n/or movements.

shout out to people who are undiagnosed n struggling with control movements.

it's not your fault. it's not your carelessness. you deserve support n accommodations. you shouldn't be judged or mocked. you deserve respect. your struggles deserve respect.

[normal-with-adhd-is-a-joke]

People are very critical about long COVID/ME/CFS patients not being on diets and it's probably the most fucking annoying ableist thing we have to deal with on a regular basis that people think is totally fine or even helpful.

Preparing homemade food takes a ton of energy. Preparing homemade food to fit a diet takes even more energy and is expensive. Carnivore is one of the most common recommendations and, aside from dieticians practically screaming about how dangerous it is due to the complete lack of vitamins, meat is expensive. Even high protein, low carb diets that aren't as strict still require you to spend quite a bit on protein. Diets like anti-inflammatory, mediterranean, low fodmap, and others that restrict certain types of food are often prohibitively complicated, and many times advice is conflicted on whether things are ok to eat and in what amount. The vast majority of restrictive diets don't come with easy-to-prepare meals unless you have a ton of money to drop on expensive meal kits.

And most importantly, for some of us food is all we have left. Being closed inside for 90% of your life is incredibly boring in a way that's hard to describe. I spend 8-10 hours a day in the same place doing the same things because they're all I can do. Eating something interesting is pretty much the only way I get to add enrichment to my life. Diet is not a cure for us, it only provides mild symptom relief if any. It's just not worth giving up the small sliver of joy that is an "unhealthy" meal when it's not going to actually result in us regaining the ability to do other things that bring us joy.

❌If you give dieting advice on this post I will block you. You're annoying and you're missing the point.❌

[buried-in-autumn-leaves]

Not to be chronically ill on main but if I get one more doctor tell me the tests came back normal again as if its GOOD news Im gonna make it everyones problem.

[houstonxbreed]

My chronic illness has turned me into such an angry person on the inside. If you met me in real life you’d never know though. I hide it because I know people don’t wanna be around someone who’s alway’s negative/angry. I don’t wanna be more of a burden than I already am. I’m also embarrassed at how devastated I am about life. My whole life is affected by this disease and it sucks because all of this is out of my control. I feel like my body hates me. I’m just upset and grieving my old life and the old me. I miss being able bodied and just enjoying life.

[blue-genes]

Been feeling like this as of late

[exhaustedbunnytm]

I thought this doctor would be different…but no…

“have you tried anti-depressants?” - yes all of them. I have treatment resistant depression I have literally done almost fucking everything.

“are you sure you eat healthy? You don’t have too much sugar?” - no processed foods, i occasionally allow myself to indulge, i eat a diet planned by a nutritionist.

“are you sure it is not psychosomatic?” - my mental health is struggling because my body is declining and I am fucking exhausted all the time. I am struggling mentally because of my physical illness.

“have you tried a multi-vitamin?” - yes, and they make me feel like shit more. I still take other vitamins.

“Im not referring you, just so you can get opioids.” - i just want to see a rheumatologist and a pain and spine specialist…for my fucking pain, that I am in every day. I want a diagnosis and no pain.

*googles cfs and reads from the same document I have read* “have you tried meditation or yoga?” - go fuck yourself, you list yourself as a chronic illness specialist and you’re googling this shit. Meditation and yoga have never and will never work for me, I have tried so many times.

“you are completely healthy, you’ve been seen by everyone” - no I have not seen everyone, i need to see a rheumatologist, and a pain and spine specialist, and someone that will actually help me try to have a quality of life.

I have been striped of everything I enjoy, i am a shell of what I once was because my hands are always in pain, my joints are swollen. I am a fucking artist who hasn’t made art in 8 months because my hands hurt so much I can’t make work. I went from being in 8+ shows a year to not even being able to make work. This has been devastating to me, I have never not been able to make art in some form. I have lost a core part of me that I thought I would never lose.

Just because I look healthy on paper does not mean I am. It does not mean it is psychosomatic, my pain is real. This is real. It is not in my head…

[blaire-beast]

Tw: flesh and (1)bug

Chronic pain

[actualfleurri]

i wish i lived a life without pain, for at least fifteen minutes. im always in pain. i barely notice my pain at this point, but its there. its constantly buzzing inside of me, screaming for my attention.

[disabledprincesses]

Wait, you're telling me having a pain so intense you can't move is considered the most painful?

I've been experiencing level 10 pain on and off for most of my life?

Aw shit...

Level 3 is just "uncomfortable??!" 5 is distracting?????

Stubbing a toe is what i would put as a 2, but if its distracting me for a while its 5??

God I wish....

[69constellationsinatrenchcoat]

Fun fact: the word 'chronic' means it's lifelong! and the phrase 'chronic illness' means I'm stuck with it until it takes me out, or I take me out. So, to the woman bothering me at a close family friend's funeral today about 'whether it goes away' can shut the hell up. Chronic means I'm stuck with it. Telling me I can think my way out of it when I have things physically wrong with my body will not do anything. No, it's not going away, and praying and trying to force me out of my wheelchair won't do jack-shit (except make me want to break your nose). Trust me, I have tried almost everything under the sun by now.

Besides, I've come to the conclusion if god/s exist, they decided I'm better used as a disability advocate than wasting their precious time on fixing the fact I'm in crippling pain constantly :DDD

[blitzsicedcoffee]

Having a disability is SO FUN guys. Did you know that everyone around you (except my loving husband) will constantly tell you to go back to work and just "push through the pain", even though you literally can't stand for more than five minutes or focus or have to take a nap every four hours?

Did you know that every time you use a mobility aid, they'll ask if you REALLY need it? (which is why I've been using it since June but not around my mom til now :) )

Did you know that just to get paid from the disability that YOU PAY FOR while you were working, you'll have to fill out like 12 different papers and have your doctor fill out the same papers like five times to "prove" that you're disabled, and if you happened to be seeing them for anything related to your current condition, they could deny you anyway? Isn't that just awesome?

Doesn't all of this sound SO ABSOLUTELY AMAZING AND FUN????!

[nightmarekilljoy]

So many ablebodied and ableminded people told me it's all "anxiety" and "you're making yourself feel sick".

I wonder how they'd feel like if they had a mind and body that was failing them.

-Amber (any pronouns)

[transspeciesguy]

You disgust everyone with actual disabilities. You don't know what it's like to be ACTUALLY disabled. Can you walk? Even just a little? How about showering yourself without the help of a stranger? I bet you can close your eyes all by yourself, right? You don't have half a paralyzed face, do you? No. No you fucking don't. You are NOT disabled. Just like a disabled person can't be 'transabled' and suddenly get the ability to walk again. You have Munchausen or something mentally wrong. You are not disabled. Stop. Be a better person.

Uh...

I am physically disabled. I have myalgic encephalomyelitis, fibromyalgia, chronic abdominal pain, disabling depression, and autism.

You do not know me. I am a stranger on the internet, you do not know what I have gone through.

I've been using a cane full time for a year now because of disabling chronic pain. I am now starting to use crutches for said pain. Over the counter pail killers do not work for me and I have been denied prescription pain killers and muscle relaxants by my caregivers.

I am in pain after any outing, no matter how long.

I am bedridden from common colds.

You, my friend, seem to not know much about disabled folks.

"Can you walk? Even just a little?" & "Just like a disabled person can't be 'transabled' and suddenly get the ability to walk again."

A large majority of disabled people can walk. Including wheelchair users.

"How about showering yourself without the help of a stranger?"

I personally have lost the ability to properly shower alone, but again disability is a spectrum. There are disabled folks who can bathe themself, that does not mean they are "less disabled" than folks that cannot.

"You don't have half a paralyzed face, do you? No. No you fucking don't. You are NOT disabled."

Paralysis is not the only disability. Acting like you have to be paralyzed to be disabled is ableist.

[houstonxbreed]

Having a severe disability that gets progressively worse over time is such a lonely experience. The more you decline, the more your loved ones leave because your limitations become a “burden” on them. Meeting new people is exhausting because you have to constantly explain your disability just for them not to understand and end up leaving you anyway. You’d think that people would wanna support you when you’re in such a vulnerable position in life but people are just quick to throw you away. Disabled people are forced to deal with the physical and mental distress that chronic illnesses cause all ALONE because society refuses to be empathetic.

[ink-asunder]

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.