Mostly severe ME/CFS, now somewhat better with pacing and mental health care
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 7 years
- Last post
- May 2024
In their words
- Condition: ME/CFS
had CFS since 13
In context ↗ - At worst: Severe
For the first 5 years of having it I was mostly severe
In context ↗ - Now: Somewhat better
which is mostly moderate and sometimes severe but much faster recovery
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
Badger 72592, 20, had CFS since age 13 and was mostly severe for the first five years, unable to manage a relationship and having dropped out of university. About 18 months of pacing and looking after their mental health brought them to a mostly moderate level, sometimes severe but with faster recovery. They do not work and need a lot of rest after dates; they had been ill about seven years.
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What they tried
What they credit
Their words about each treatment
- pacing · Helped
It took me about 18 months of actively working on managing my symptoms with pacing and also looking after my mental health to get to where I am now
In context ↗ - looking after my mental health · Helped
also looking after my mental health
In context ↗
Approaches: CBT & mindset · 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 13 | CFS began; mostly severe for the first five yearshad CFS since 13. For the first 5 years of having it I was mostly severe and definitely unable to manage a relationship.In context ↗ | Severe | |
| 2024-05-20 | mostly moderate after 18 months of pacing and mental-health workIt took me about 18 months of actively working on managing my symptoms with pacing and also looking after my mental health to get to where I am now, which is mostly moderate and sometimes severe but much faster recoveryIn context ↗ | Moderate | Pacing and the energy envelope |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
prioritising taking care of myself to make sure I don't push through PEM
In context ↗
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