ME/CFS
Severe → much betterIll 5 years before improving or writing
Bed-bound at worst with ME/CFS, now much better after less stressful job and home working
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- May 2024
In their words
- Condition: ME/CFS
Diagnosed CFS about 4 years ago.
In context ↗ - At worst: Severe
During my worst, I was bed-bound. Getting up to go to the bathroom would completely exhaust me and knock me out for hours.
In context ↗ - Now: Much better
Over the past 4 years I’ve improved so much. I’m mild now, and am able to hold down a full time job working from home.
In context ↗ - Began after: glandular fever or EBV
I got glandular fever in 2015, and never let myself rest to properly recover.
In context ↗
Summary
After glandular fever in 2015 they pushed through with heavy exercise, then crashed hard after another virus caught in Vietnam and developed CFS. They were bed-bound at their worst and barely left the house for about a year. A less stressful job and working from home from 2020 brought major improvement; by 2024 they were mild, working full time from home and surfing, about 75% of their pre-illness level but still limited to gentle walks.
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What they tried
Also tried
Their words about each treatment
- Ritalin · Worse
at first I feel really calm and peaceful on them, I can get things done, then after about 1hr I feel really tired and then it moves into fatigue
In context ↗
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 |
|---|---|---|
| 2015 | Glandular fever, pushed through with heavy exerciseI got glandular fever in 2015, and never let myself rest to properly recover.In context ↗ | Mild |
| 2017 | Crashed hard after another virus caught in Vietnam; developed CFSGot home and relaxed and my body finally crashed HARD. Developed CFS.In context ↗ | Severe |
| 2018 | Began to get better and started a new jobI did start to get better, actually saw significant improvements, and started a new job.In context ↗ | Moderate |
| 2018 | Went downhill after a few months at the job and took significant time offAfter a few months I started going downhill again and had to have significant time off.In context ↗ | Moderate |
| 2019 | Went downhill again; two months off then two months reduced hoursThen I came back to work, went downhill again, took 2 months off and then 2 months reduced hours.In context ↗ | Moderate |
| 2020 | Transferred to a less stressful job and began working from home as Covid hitMy manager helped me transfer to a less stressful job at the same company just as Covid hit.In context ↗ | Moderate |
| 2024 | Mild, working full time from home and surfing, about 75% of pre-illnessI’m mild now, and am able to hold down a full time job working from home.In context ↗ | Mild |
Adverse events
- Methylphenidate (Ritalin, Concerta)“then after about 1hr I feel really tired and then it moves into fatigue.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Getting up to go to the bathroom would completely exhaust me and knock me out for hours.
In context ↗