Mirror: I can barely walk and I'm bed-bound 23 hours a day - M.E. nearly killed me Jessica Taylor Beramn, 28, had such severe from to the disease, she's been ill for 13 years, two of this in a comatose state.
Good article told entirely in Jessica Taylor Bearman's own words. A glimpse into Jessica's experience of very severe ME and an introduction to her book, 'A Girl Behind Dark Glasses'. I hope it pushes up sales of the book, especially to people involved in diagnosing and treating pwME. Well done @jayletay, and thank you.
Generally it’s a very good article, helps to raise awareness. “● The effects of M.E. are devastating enough to leave 25% of patients housebound or bedbound. For moderate to severe patients, living with M.E. is like living with late-stage cancer, advanced-stage AIDS, or congestive heart failure for decades.” Good “facts” too Nit picking I dislike the “forgotten to know how to walk” language, I know that’s how professor Findlay used to describe it in the rehabilitation explanation - forget, relearn - but it makes no sense to me.
Even though it may not make sense to you does not mean it makes no sense to some PwME; ME affects different people in different ways. My wife (the one with ME, not me) described exactly this to me a good few years ago now. She has real trouble walking: has to walk slowly, and always has to look down at the ground where she is walking - cannot hold her head up and look ahead. And when I asked her about this, she told me it was like she had to learn how to walk again, as if she had lost the ability to do it automatically and unconsciously, but instead now has to consciously think her way through each step. Not getting at you @Cinders66, but just noting that ME takes people very differently.
It makes sense to me. ME has at various times stolen functioning that I've had to later relearn. Such as losing the ability to do math or to speak in complete sentences. Doctors roll their eyes when you tell them, though.
I have the greatest respect for the medical profession in so many ways, but it does seem to come with its own special portion of arrogance.
Great article. Her strength and resilience amazes me. What an achievement to have written this book and to follow it up with PR like this
Not sure if it has been mentioned that her book is available on itunes (audiobook). https://itunes.apple.com/gb/audiobo...-glasses-unabridged/id1433081716?ign-mpt=uo=2 no customer ratings yet (not sure if you can comment if you read the book(?))
