From Helen Connick who posted this as a comment on my FB page: "Made a guide for the people I live with, for when I'm getting the worst PEM, to help them help me rest, and understand" #PostExertionalMalaise #MEcfs
@TomKindlon That is very good, very helpful
This is so true. And largely an impossible task for a child. We try our best to keep our son optimistic so he survives into an age range where he can learn the skills Whitney describes.
A patient who created a popular sheet on how to deal with somebody in postexertional malaise (PEM) has adapted it for hospital staff #MEcfs #LongCovid
"Today my son has his birthday. He is turning 20. No one can congratulate him. I cannot speak with him. He can't even recognize a flower in the dark. I just took him in my arms. He cried bitterly. Bitterly."
Need to remember the age old lesson: don’t feed the trolls! The red flags 🚩 in people’s posts that show they’re ableist, racist, sexist etc are enough to block. I fell into the trap of replying to two of them today.