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"Some of the young adults rated their health as “good,” while the amount of activity they could perform was minimal. They had become so used to their performance level, they accepted it as their new normal." #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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From: Prognosis of ME/CFS – by David S. Bell, MD (August, 2016) "But there is a problem here as well, as patients become so used to the symptoms of ME/CFS, they accept them as ‘normal’" omf.ngo/2016/08/01/pro #MEcfs #CFS #MyalgicE
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Yes, perception is a funny thing. Right now for me things are "good", but only in comparison to the lows of my ME roller-coaster. Ask pre-ME me about my current state, and the reply would be quite different. When well, I never thought I could be this ill for so long.
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Normal is always a relative term. Fine in most of us is about moderate cold level. That's the new normal. Not having a pounding headache is pretty nice. It's weird how change in function level is not part of diagnosis. How different that new normal is.
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That’s become true for me After so many years I call a day “good” when I don’t go into a coma crash, when I can read without brain pain, when I can drive 2 grocery shopping without feeling like I’m going to die, when I can walk a few blocks 2 coffeeshop without sense of dying
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Yep, my daughter is one. She considers being in school for 2 lessons per day as good. She has a mobility wheelchair for outside movement, she can’t wake before 9 am and is begging to sleep by 8.40pm - that’s good compared to 3 months ago but not normal teenager good 😥
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I recently realised that on the rare occasion that I visit my GP, I look "normal", sound "normal", I don't consult him about ME symptoms. I'm sure he thinks that I live a "normal" life. I think I live a normal life too, until I'm invited to a social event beyond my capabilities.
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