Does Anyone Else Feel Like They Kind Of Have To Train Their Able-bodied Friends?

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.

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.

chronic illness really makes the weirdest ‘would you rather’ scenarios come to life.

like, would you rather: show up to christmas with no presents for anyone or show up having not showered for a week?

would you rather: feed yourself or do the dishes?

you can choose both but your penalty is to spend an unknown amount of time bedbound afterwards.

yknow what i hate so much? when i technically Could do something that requires more spoons like reading or watching something that im not familiar with, but i know i Should give my brain a rest and read or watch the most mind-numbingly familiar and low spoons things i can find instead

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?

people who assign morality to disabilities: you are not above becoming disabled. you will do everything right and you might still find that one day you are not able-bodied anymore. disability and morality have no correlation.

doctors hate her! This woman is experiencing symptoms that might point to a health problem and wants doctors to do something about it

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.

Your friends and family with chronic pain aren't doing well.

Yes, even the ones that say they are.

Yes, especially the ones that are complaining and lashing out already.

Chances are high that however bad they will admit things are it's actually worse. By a lot.

We're conditioned to be "okay". If we're breaking down at non scheduled times we aren't coping well. I promise.

Your sibling/partner/bestie/parent who is breaking down without preamble on a Tuesday is suffering. Be kind. We're sorry.