Severely disabled with ME/CFS, barely able to tidy a room, now partly better
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- May 2025
In their words
- Condition: ME/CFS
believe that it contributed to my CFS
In context ↗ - At worst: Severe
I barely have any energy to keep my room tidy or to take care of basic responsibilities
In context ↗ - Now: Somewhat better
Didn't knew that counted as remission. Feeling very happy rn (' :
In context ↗ - Began after: nothing they could name
CFS was creeping into my life
In context ↗
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
A Reddit user with ME/CFS, already severely disabled before the illness crept into their life, described barely enough energy to tidy their room or manage basic responsibilities and needing a caretaker. They could not play games for one to two years, then could again, and later said they were happy to learn it counted as remission. They said sleep was difficult at times because of flashbacks and manic experiences.
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What they tried
What they credit
Also tried
Their words about each treatment
- Trauma processing · Helped
Trauma processing was the only thing that helped me throughout denial
In context ↗ - resting my eyes with low stimulation · Helped
The only way that I have found around this is teaching myself to "rest my eyes" with little stimulation sources like music or pure silence.
In context ↗
Approaches: Trauma & somatic work
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 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 |
|---|---|---|
| onset | CFS creeping into their lifeCFS was creeping into my lifeIn context ↗ | Not stated |
| — | barely energy for basic responsibilities, unable to play gamesI barely have any energy to keep my room tidy or to take care of basic responsibilities ... I wasn't able to play games for 1-2 years. | Severe |
| 2025-05 | able to play games again after 1-2 yearsI can't even describe the happiness I felt after starting to play games again.In context ↗ | Moderate |
| 2025-05-27 | baseline at least 10% better, counted as remissionDidn't knew that counted as remission. Feeling very happy rn (' :In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
to not risk worsening/creating PEM
In context ↗ - Sleep problems
I had so many times where sleeping was difficult due to flashbacks and/or severe manic experiences
In context ↗
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