Severe ME/CFS for years, somewhat better with strict routines and rest
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- Feb 2026
In their words
- Condition: ME/CFS
Energy is scarce
In context ↗ - At worst: Moderate
I went through three years where things kept getting worse before they finally stabilised, and I was in a terribly bad state.
In context ↗ - Now: Somewhat better
I have gotten better slowly but incrementally
In context ↗
Summary
Hill 53939 described years of severe illness, including a three-year stretch when things kept getting worse before stabilising in a terribly bad state. Since then they reported slow, incremental improvement, which they linked to avoiding setbacks, patience, discipline and strict routines, and they advised regular rest. By their latest posts they still described scarce energy and almost never showering, though they managed with baby wipes and washing their feet.
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What they tried
What they credit
Their words about each treatment
- avoiding all setbacks, strict routines and resting when fatigue approaches · Helped
I learned how to create stability for myself, which led to gradual progress. ... Whenever I feel the fatigue approaching I rest.
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 |
|---|---|---|---|
| — | lowest point after three years of worsening; terribly bad stateI went through three years where things kept getting worse before they finally stabilised, and I was in a terribly bad state.In context ↗ | Not stated | |
| 2025-07-14 | slow incremental improvementLuckily I have gotten better slowly but incrementally.In context ↗ | Not stated | Pacing and the energy envelope |
| 2025-11-13 | gradual progress after mental reset and stability routinesOver time, I learned how to create stability for myself, which led to gradual progress.In context ↗ | Not stated | Pacing and the energy envelope |
| 2026-02-20 | still limited; almost never showers and needs restEnergy is scarce ... I almost never shower. Wet baby napkins and washing my feet is enough. | Moderate | Pacing and the energy envelope |
Symptoms mentioned
Their words about their symptoms
- Anxiety & low mood
Not knowing how to endure even one more hour - continuously so for years.
In context ↗
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