Actually Though Medical Trauma Is Often Really Glossed Over In General Discussions And Depictions Of

Sometimes it feels like i am already dead. Not part of anyones life anymore. Locked up in my flat. Just a liability for my parents who dont even like me. Like a ghost who is damned to haunt this room, but still has pain and wifi.

Please understand that not every marginalized person is going to have a list of peer reviewed sources and accurate statistics proving the bigotry they face in their daily life and you sometimes just have to decide to believe people when they tell you they are suffering

I won't lie gang... this past month I have gone from using a cane to get around outside to only using my wheelchair- propelled by someone else- to get from my bedroom to the bathroom. needless to say my condition is progressing at a really steady rate and things are getting scary. I am unable to make myself food or even hold my phone and type for too long. However as this is all so new and happening over the christmas/new year period I am not getting adequate assistanc or healthcare as I still need to APPLY FOR ASSISTANCE to help me APPLY FOR ASSISTANCE which could overall take 6+ months. Despite people pushing me to remain hopefull, I can really only see myself getting worse from here. My resilience can only keep me awake for so long. What I really want to ask, specifically the me/cfs community but the wider chronic illness community too, is for help arranging a sort of "living will" for however long I'll be alive but not able to do very much. my will for what happens to the life that I used to have before it all got worse - and how I would like to be taken care of. Are there any templates out there that I can send to my carers? If not that, some advice or words of support anybody can give?

like yeah. you're not a bad person just because you're disabled. but also you're not a good person for being abled. you're not a good person for being abled. it doesn't make you better than disabled people. you're not a good person for being abled. internalise it. it's not a reward. you did nothing to deserve this - because health is not something that people "deserve" or don't. it's something they have or not, for any number of reasons

different than what I usually post but I'm mentally so so tired and in a ranting mood lol

able bodied people doing things that aren't ideal for their health is so normalized, but when disabled people do it it's wrong or worse somehow?? are disabled people not allowed to be human sometimes??? "isn't that bad for XYZ?" "didn't you say you shouldn't XYZ?" "i thought people with XYZ shouldn't-" I'M AWARE!! I DID NOT ASK!! im not a toddler that you have to remind to eat their veggies or not to stand too close to the tv, im a grown ass adult. ive been living with my disability and chronic illnesses as long as i can remember. sometimes i don't wear my braces when i should, or drink more alcohol than i should, or have caffeine, or do things that I KNOW could trigger flares or seizure or some other issue my body feels like being a bitch about. im fucking human. im allowed to do things that make me happy even if it's not the best for me, just like anyone else. let me live, christ.

If you've ever told a person who's had to be bedbound for a period of time that you wish you could "just stay in bed", DO IT.

Stay in bed. For days. But don't get up if someone needs you to, or you get bored, or you get antsy. Don't do anything other than rest. Just lie in your bed, whether you need to get stuff done around the house or socialize or anything else "productive". You'll have to cancel on people, you'll disappoint them, they won't understand.

And if you're thinking, "well, i CAN'T just be in bed. There's stuff that has to be done - I have plans", maybe ask yourself why you assumed a disabled person doesn't have plans or things to do or desires.

Had an appointment with my neurologist today. Guess who went there with a stupid spark of hope to be taken seriosly this time and ended up crying ugly in the parking lot 🙃🙃

How do people keep replying when friends ask how are you? I hate being so negative but often it's my reality like I couldn't do a lot of things today but I'm trying and nothing has changed!! I don't want to push them away by being the one who's always sick

When talking about disability and chronic illness, people don't understand that happiness isn't optional. Humans have a fun meter in their brain just like the sims, and that doesn't change for disabled people.

I love recognizing limitations and accommodating myself when I can, but at the same time, I WANT to do things for my own happiness. I WANT to cosplay at an anime convention, even if that means I won't be able to walk for 3 days. I WANT to go canoeing with friends, even if that means I'll be sick for 2 months after. I want my room to be clean and I want to decorate my space and I want to go have fucking fun in the real world and not just video games for once.

And when it comes to instances of stuff we do purely for fun, people still talk down to us and give us the "know your limits" speech like us having fun exists in the same context as breaking our bodies for the sake of capitalism. It's not the same thing. Quit shaming disabled people for doing shit. Let disabled people chose informed risk for the sake of fun and happiness. Fun and happiness are not optional.

Sometimes, I still feel so able bodied.

Like the aches and pains are quiet for just a moment long enough for me to remember what freedom I used to have. It's almost like if I yearn for it hard enough, I can have the old me back. The me that could still achieve all my dreams. The me that had no idea what was coming and how much it would all cost me.

Somedays, I still feel the urge to live the way I could before. Carefree and boundless. God, I can almost taste it.