Your Friends And Family With Chronic Pain Aren't Doing Well.

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

i be checking my phone like someone cares about me lol

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.

went to my general practitioner and suddenly got diagnosed with post covid and cfs. after he had not taken my symptoms seriously in the past. after years of medical gaslighting. i mean i still think its mecfs but thats probably as close as it gets. which is so much better than nothing. nevertheless i don't really seem to feel much about it even after i've recovered for over a week from this draining excursion. just endless exhaustion

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

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

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?

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.

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.