Chronicstuff

hi, i want to share stuff about my life with chronic migraine and other health struggles. i'm still in the process of getting diagnosed for the latter, but strongly suspect that it's mecfs. a few weeks ago my condition got worse and i feel very isolated so here i am.

it's funny that people act like disabled people are such a downer and negative and pessimistic for acknowledging their health conditions when we have to be the most optimistic suckers on earth to repeatedly go to drs with the expectation of actually recieving treatment. did i say funny sorry i meant soul destroying

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.

You don't owe anyone an explanation of your condition/disability, how or when it started, what meds you take, what tests you've undergone, or literally anything about your health!

It doesn't matter if it's a stranger, a friend, or a relative.

It's your life and you have a right to privacy.

Don't let them guilt you into answering invasive questions.

@spacedocmom

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?

Image ID:]

A grid with four squares. The first square reads 'the day after overdoing it: "huh, I don't feel as bad as I thought I would!". The square next to it shows a picture of the "The Fool" tarot card from the Modern Witch Tarot Deck.

The third square reads 'That evening, trying to get to sleep:'. The fourth square shows the "Ten of Swords" tarot card from the Modern Witch Tarot Deck. It's shows a white femme character lying on their side, on their phone, while ten swords are stuck in their side.

[End of image ID.]

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.

I've been worried ever since I was born