ME/CFS with very low energy, mostly in bed or a recliner, relapsed after pacing helped
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 10 years
- Last post
- Sep 2024
In their words
- Condition: ME/CFS
I had ME about 10 years before I learned about pacing
In context ↗ - At worst: Severe
90% of my day everyday is spent in a recliner or bed. The rest is broken up into 10-15 min increments to do things like make an easy meal.
In context ↗ - Now: Relapsed
pacing which helped for about 10 years. I still do a form of pacing but my energy is very low now so it’s not all that helpful anymore.
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
They had ME for about 10 years before learning pacing, which helped for roughly another decade. They still paced, but by September 2024 their energy was very low and they spent about 90% of each day in a recliner or bed. They did tasks in 10–15 minute increments and managed occasional outings, including weekly visits with grandchildren.
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What they tried
What they credit
Their words about each treatment
- pacing · Helped
I had ME about 10 years before I learned about pacing which helped for about 10 years. I still do a form of pacing but my energy is very low now so it’s not all that helpful anymore.
In context ↗
Approaches: Pacing
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | ME onsetI had ME about 10 years before I learned about pacing which helped for about 10 years.In context ↗ | Not stated | |
| about 10 years after onset | learned pacing; it helped for about 10 years | Not stated | Pacing and the energy envelope |
| 2024-09-30 | energy very low; pacing less helpfulmy energy is very low now so it’s not all that helpful anymore.In context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
going past “ mildly tired “ to complete/ do something cost me more in the long run.
In context ↗
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