#mecfs

i broke down crying and had to pause the episode when Zooble said "But I had dreams and goals! This just sucks" because FUCKING SAME.

but sometimes people lose their place in the world. their dreams and goals are inaccessible. their bodies become unrecognizable. their personalities and emotions become unrecognizable. they deny reality, reject companionship. they dissociate from their lives and past selves. they lose the ability to be a part of the larger world and do the things they used to do and live the lives they always lived.

I dont think they will leave the circus and i hope they wont because i dont want a cure story.

sometimes you lose your life and you just have to figure out how to keep living afterwards.

and at least having someone else there makes it bearable. as long as you have other people, you can keep living even if your life is over.

Unusual but sympathetic paper:

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

it is insidious, it affects everything, fat people die from it. but no one speaks up.

i am mostly housebound, and the time i spend at home, i spend 95% in bed. i live with severe chronic pain and moderate-severe MECFS to name the worst of my conditions. i struggle with walking both due to excruciating pain and due to PEM & crashing from MECFS. i am mostly housebound, and the time i spend at home, i spend 95% in bed.

i use a rollator, but it isn't enough, i need a powerchair. but when i scheduled an appointment with OT i got told that they can clearly see my need for a powerchair, but that they won't prescribe one because "i need all the exercise i can get".

it is torture, it is cruel.

all my health issues have been blamed on my weight, to the point where they will not even examine me. they see that i'm fat and won't bother to even do a physical exam. i get denied treatment, i get denied medications, i get denied lifesaving mobility aids, i get denied healthcare.

i am scared. my pain will remain severe and my MECFS baseline continues to worsen, because of medical fatphobia. and no one talks about it. no one.

LEARN ABOUT MEDICAL FATPHOBIA.

SPEAK UP.

It’s okay to sit down while doing anything in the kitchen. You don’t even need to be disabled or chronically ill. Your feet do not need any excuses. Rest them

It’s okay to cut potatoes in front of the tv while sitting on the couch.

Abled folks could learn a lot from the measures disabled folks take to adapt to their conditions and hack their environment and daily tasks so it benefits them in all the possible ways.