New Favourite Thing To Do Is To Remind People Of How Much They Hated Lockdown When They Say They Wish

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.

who up experiencing emotions they can talk to no one about

Asking for help while being disabled shouldn't feel so much like handing someone your autonomy and saying "take this away."

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.

Anyway,

You deserve family who try to understand your illness.

You deserve family who try to accommodate your illness.

You deserve family who respect your decisions regarding your illness.

You deserve family who nicely listen to you vent about your illness.

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?

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.

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.]

to me, the universal trust in doctors from people who haven't experienced medical mistreatment/neglect is akin to the trust that upper middle class and white people have in the police. they haven't experienced the mistreatment themselves so they assume it doesn't exist. they assume that every doctor or police officer is only in it for protecting people. they assume that the people who made the rules for these organisations are somehow all-knowing and know the truth about what is morally correct for society. the difference is that there actually is such thing as a good doctor, while there is no such thing as a good cop.

shoutout to the people who desperately want to move out but can't because they have medium/high support needs, and their family is the only people they have to rely on. especially since autistic and disabled adults are much more likely to suffer from loneliness. i hope you get what you need soon.