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and @twitchyspoonie is right: although QoL ratings aren't infallible (what is?), they are SOMETHING. and #MECFS is near the top, charted by more than one source. right near illnesses that are widely understood to be life shattering.
ME gets this old myth of "tired, meh, lying on the couch." but no. ME is violent, multi-systemic, all-encompassing.
the list of what we can't do is steeper than most of you have ever dreamed. and then there's the list of torment. the pain. the body hell in so many ways.
the list of what we can't do is steeper than most of you have ever dreamed. and then there's the list of torment. the pain. the body hell in so many ways.
imagine a person with ME whose economic, daily, bodily needs were all met 100%. even imagine they made peace (ha) with not going out or seeing anyone. would that be a peaceful ME existence? no the hell it would not.
we are rocked with multi-systemic upheaval.
we are rocked with multi-systemic upheaval.
i personally have 17 kinds of pain. neurological misfirings. cognitive trash. gastrointestinal trash. my autonomic nervous system is off its rails.
i haven't slept properly for 27 years.
#pwME are not over here resting. we're not resting. we're surviving.
i haven't slept properly for 27 years.
#pwME are not over here resting. we're not resting. we're surviving.
this applies even if the hypothetical #pwME made peace (ha) with never leaving their damn bed. it would not be peaceful. even when we do what's best for ME, it hurls upheavals through our bodies, day after day, year after year, decade after decade. https://twitter.com/tommyinboots/status/1310784682435514369
