Bedbound with ME/CFS, now somewhat better with pacing and meditation
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 22 years
- Last post
- Jun 2026
In their words
- Condition: ME/CFS
I’ve had ME/CFS since I was eleven, almost 22 years now.
In context ↗ - At worst: Severe
That stellar advice landed me bed bound and unable to socialize at all.
In context ↗ - Now: Somewhat better
Now I’m back to moderate, I can take walks sometimes and do some work at home. But I still have a long way to go.
In context ↗
Summary
Had ME/CFS since age 11, nearly 22 years, mild to moderate until burnout about three years ago pushed it to severe and left them bedbound and unable to socialize. They took up meditation, pacing and heart-rate monitoring, treating recovery as a job. By 2026 they were back to moderate, able to take occasional walks and do some work at home, and said they were slowly improving, though they still could not socialize much.
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What they tried
What they credit
Also tried
Their words about each treatment
- meditation · Helped
I know meditation helps me
In context ↗ - pacing · Helped
never pushing myself beyond what my body tells me has been a big key
In context ↗ - heart rate monitoring · Helped
I got into meditation, pacing, heart rate monitoring
In context ↗ - being extremely kind and loving to myself and caring for myself · Helped
Being extremely kind and loving to myself and caring for myself
In context ↗
Approaches: Mind-body practices · Pacing
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| age 11 | ME/CFS began at age 11, mild to moderate for yearsI’ve had ME/CFS since I was eleven, almost 22 years now. But it has stayed mild/moderate until about three years agoIn context ↗ | Mild | |
| about three years before April 2026 | burnout pushed ME/CFS into severe; bedbound and unable to socializeabout three years ago when burn out pushed it into severeIn context ↗ | Severe | |
| 2026-04-21 | back to moderate, walks sometimes and some work at homeNow I’m back to moderate, I can take walks sometimes and do some work at home. But I still have a long way to go.In context ↗ | Moderate | Pacing and the energy envelope |
| 2026-06-18 | slowly improving with self-kindness and never pushing past what the body allowsI am slowly improving. Being extremely kind and loving to myself and caring for myself and never pushing myself beyond what my body tells me has been a big key.In context ↗ | Moderate | Pacing and the energy envelope |
Adverse events
- “doctors told me to push through a lot ... That stellar advice landed me bed bound and unable to socialize at all.” In context ↗ Made symptoms worse
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