Bedbound and foggy with ME/CFS, now mostly functional after graded exercise at own pace
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- Mar 2021
In their words
- Condition: ME/CFS
I have CFS too and it helped.
In context ↗ - At worst: Severe
4 years ago I could not leave my bed
In context ↗ - Now: Near normal
I'm not back to normal, but I set a pretty high bar for normal before I got ill
In context ↗
Read from 7 of their posts and comments; links to the 5 this page draws on
Summary
A UK man who fell ill with CFS around 2015 was bedbound at his worst, too foggy to form memories. By 2018 he was building activity up gradually, crediting graded exercise at his own pace and at the right times. By 2020 he held a full-time job, walked 5-10km a day and continued a PhD. He said he was not back to normal but mostly functional, with PEM still a problem.
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What they tried
What they credit
Also tried
Their words about each treatment
- GET / pushing a little harder on good days · Helped a lot
I only get better when I push a little harder every good day
In context ↗ - controlling food intake · Not said
I gained a lot of weight but I'm losing it now
In context ↗
Approaches: Exercise and activity
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The chart starts 12 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2015 | fell ill with CFSI have been ill for 5 yearsIn context ↗ | Not stated | |
| 2016 | bedbound, barely able to leave bed, memory gapsThis time 2 years ago I could barely leave my bed and my memories are missing for a lot of the timeIn context ↗ | Severe | |
| 2018-11-30 | able to start exercise again, walked 30,000 steps in a day, started part-time IT businessThe other day I walked 30,000 steps in a day for the first time since getting illIn context ↗ | Mild | Everyday exercise and activity |
| 2019-06-26 | working two days a week and doing a PhD two others, with a social lifeto working 2 days a week and doing a PhD 2 others, and still having a social lifeIn context ↗ | Mild | Everyday exercise and activity |
| 2020-10-21 | full-time job, out of bed all day, walking 5-10km a daynow I can spend all day out of it, hold down a full time job and walk 5-10km a dayIn context ↗ | Near normal | Everyday exercise and activity |
| 2021-03-06 | mostly functional with a full-time job and PhD underway, not back to normalI have gone from bedbound with very little ability to form proper memories, to being a mostly functional person with a full time job and a PhD underwayIn context ↗ | Near normal | Everyday exercise and activity |
Symptoms mentioned
Their words about their symptoms
- Brain fog
so foggy I'm unable to form memories
In context ↗ - Post-exertional malaise
PEM is absolutely a problem for me
In context ↗
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