Unsure how common this is in other #ChronicIllness affecting cognition, but when you have #MyalgicEncephalomyelitis the writing errors you’re almost guaranteed to make are:
Double the same word
or
Exclude it altogether
Or do both!
So frustrating & the sicker you are the worse it gets. You simply can’t see mistakes! Other problems too ofc but I’ve found this is the most common error made by #PwME
It takes forever to draft posts so when those of us on the more severe end of #ME make one it’s really hard. I wish I could explain how tough it is & people understood how much we’re sharing of limited energy supply.
And sometimes you get too sick to read and write at all. Or look at a screen because of sensory overload.
Now it’s worse because of my recent 3rd #Covid infection which both worsens existing symptoms and gives you new ones!
And this is where we can be more kind. Often all we need is the gist of a comment or message. So making fun of people, or needlessly pointing out errors, is not cool.
My chronic illnesses are having one of those, we're too tired to do anything days. Or more like week. 😂
I just wish it didn't have to mean that my mind takes it upon itself to make me feel bad about not doing enough. 🤔
@NickEast@chronicillness@writers@writingcommunity@writing With Chronic illness, you must remember one very important thang. Self Care is work too, because it requires intentionality, such as not beating yourself up, and intentionally resting, hydrating, and keeping stress low, so you can bounce ack for a better day soon
I tried so hard to get out of here but I can’t get away. I tried so hard be they worse when I am very sick and can’t fight back. 😭 They promised to help during tough week. Instead screamed at denied rest and food.
I’ve been traumatised so badly by the medical system that even getting bloodwork done is freaking me out.
I wasn’t like this a few years ago. A lot of bad stuff has happened since then.
It is 13 tubes though. 😩
#ChronicIllness involves a lot of medical trauma. There’s a lot of related mental trauma too but you have no energy to deal with it so it’s constant running to keep still. Like a hamster on a wheel. Especially when the medical system fails you & basic needs aren’t met.
“Having two big days in a row wipes me out, and I need a quiet day with little interaction, which is hard for my son to understand as he just wants to talk to me.”
“I don’t admit that I feel lonely. CFS can be such a lonely disease because when you are sleeping constantly you are separating yourself from the rest of the world. And the pain is so segregating — you own it, no one else is sharing that pain, you are alone. It is hard to feel connected to others when you crash for days.”
The absolute worst part of chronic fatigue and worsening chronic illness is not just that you lose the ability to do stuff or lose hobbies, but that it keeps progressing.
I find a new hobby to replace what I lost (originally I loved reading constantly, lost that ability in my early 20s), and then I lose that one too.
😔
I can barely play games anymore, I struggle to focus on anything that requires processing, and any emotional trigger exhausts me so I avoid most heavy content
It's a type of isolation that affects even online community access and friendship since you're so excluded from the fandoms and common subjects
I feel this deeply!! I wasn't able to watch movies or shows for a full year after COVID and now, after 3 years, I more or less can---but with a lot of rewinding. It's very much not something most people are going to enjoy sitting through as it can take me easily twice as long to finish a movie as its runtime & I'm surprised my cognition improved even to this point.
That first year of struggling to survive after COVID was spent mostly just laying on the floor, trying to listen to familiar things, maybe some new podcasts, but the isolation was suffocating. It still is, but now I have slightly more ability to open up the cocoon.
You deserve a loving, supportive, patient community that will work to include you.
@GwenfarsGarden@mecfs@chronicillness
Given the commonalities with fibromyalgia, MS, and other autoimmune diseases, whatever can trigger them, can also trigger ME. Infections of any kind, physical trauma, extensive surgery, etc. most likely can trigger ME in those who have the genetic predisposition. It is unacceptable that medicine has been so indifferent to so much suffering.
I’ve never had pain during the Beighton score for #ehlersdanlossyndrome but after? Ugh. I’m not the most bendy of the zebras at 6/9 and yet each clinician seems to need or want to try to validate a well documented finding. Started another go round of physical therapy today, so I do understand the need to document the 200+ ROM of my shoulders. Still 6/9 and no, I’m not bending my thumb back again because this body has been keeping receipts for the last 3+ decades—thanks. @chronicillness
"To explore experiences of patients who have complex chronic conditions, such as #fibromyalgia & #chronicfatiguesyndrome, when they request medical assistance in dying (#MAID) in Canada"