Anyone improve from bed/housebound to high level of functionality?
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- 9 months
- Published
- Oct 2011
Summary
With no medication, just strict pacing and aggressive bed rest whenever a crash threatened, she recovered very slowly over roughly 3-5 years from total bedridden severity (about 9 months unable to stand, with periods of unconsciousness) plus fibromyalgia, reaching what she calls "complete remission" - able to complete a 2-day marathon without a crash - level 10 on her own 0-10 scale. She hedges "it's impossible to say whether these led to my improvement." The remission did not hold: once she stopped closely tracking her body's signals she "just crashed again," and in later posts describes spending 4-5 years trying to get back to that level, sitting around 2.5/10 in the meantime.
What they credit
Credits Pacing, Supplements, Pacing and the energy envelope, Radical rest.
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