PLEASE HELP A DISABLED PERSON

You should be able to say “don’t touch me” to anyone ever in any context and not have it be considered in the realm of surprising or insulting imho if we ever needed to normalize something it’s this

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?

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.

I was outside today! For the first time in weeks except medical appointments. Went for a very short walk. It was great, but i'll probably have to pay for it and also i'm more sad now than i was before. The distance between where im at and where i would like to be is just too big.

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.

i be checking my phone like someone cares about me lol

Ugh my head hurts so much i just want to ripp it off rn

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 🙃🙃