People Eventually Get Diagnosed BECAUSE They Are Already Disabled And Struggling. The Symptoms Don't

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?

if i ever interacted with you and it was awkward just know im sorry and painfully aware that sometimes i come off like a person who is having the first conversation of their life

When abled people are involved, the concept of "doing it once in a while for a few seconds doesn't mean you can do it consistently on command like it's nothing" is easily understood.

For example, if someone is able to walk outside without a jacket in the cold to get the mail, everyone would easily understand that they'd still need a jacket if they were outside for a prolonged period of time. If someone is able to hold their breath underwater for a few seconds, everyone would easily understand that they'd still need an oxygen tank in order to stay underwater indefinitely.

But when disabled people are involved, that concept is somehow forgotten. You can stand for a few seconds? You must not actually need that wheelchair. You can socialize once in a long while if the conditions are exactly right? You must not actually struggle to socialize and any struggle you think you have is just fear and negativity. You can be physically active for an hour on a good day? You must not actually be too disabled to work. You have a lot of knowledge on a topic because it's a special interest of yours? You must be "smart" and any bad grades you get are because you're lazy.

me: ive been bedbound for six months

dr: have u tried getting up?

me:

dr: being upright is good for u to prevent deconditioning

me:

dr:

me: it was in fact the first thing i tried

Regular reminder you don't owe anyone information about your health, disability, or medical treatment. You have the right to provide as much information as you are comfortable with and no one is entitled to more.

Doctor calls you with your bloodwork results and just says “I’m really mad at you” and then hangs up

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 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.

We need to recognize the collective trauma disabled people went through and are still going through with covid when everyone around us told us that our lives were less important than their convenience. That "only the sick and elderly will die so why should I do anything differently?"

I lost my faith in humanity at that point and I don't think I'll ever be able to get it back.