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!
Yes I keep posting that I can pay part of the rent as well as pay them for being my carer, so that’s roughly the same I think.There’s government help but people really don’t want anything to do with government agencies here so maybe that’s the problem.
I’m not sure if there is a platform for this in Australia. If anyone knows, let me know please.
I don’t understand why people in other countries offer help but barely any from #Australia. Especially #Melbourne.The sicker you get & more help you need the more people feel sad & switch you off &put you on the pile as “not my problem” or “someone else will do it”
No they won’t.
My part time advocate quit. Only had some help for 3 months then she went on 2 months leave and now tells me she isn’t coming back because I’m too much. So that’s nice. 😩 I’m so tired.
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.
Do these cooler type things work at all? I have to survive another upcoming heatwave and can’t regulate my body temperature (#dysautonomia) so am risking heatstroke again.
Just humidity machines? (Humidity makes thinks even worse).
#MEAwarenessHour
More #PEM awaits me over the next who knows how long. It never gets easier.
It’s never predictable anymore. The #RollingPEM I’ve developed as a result of so much overexertion during the last few years has made it into pain that I’m used to but never stop fearing.