ME/CFS
Severe → no benefit
ME/CFS with delayed post-exertional malaise, chair bound when out
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- May 2024
In their words
- Condition: ME/CFS
Yup, PEM is one of the key indicators in CFS. For me, it starts the morning after exertion
In context ↗ - At worst: Severe
Feel the same about my power wheelchair, it's a real livesaver for me, couldn't be out without it ... it sucks to be chair bound when out.
In context ↗ - Now: No benefit
I then have to uber rest to get back to my baseline.
In context ↗
Summary
Heron 40468 has ME/CFS with post-exertional malaise that starts the morning after exertion, sometimes a day later, and needs to rest intensively to get back to baseline. They use a power wheelchair when out, describing themselves as chair bound when out, and play low-impact games from the sofa or bed when not well enough to sit at the computer.
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What they tried
Their words about each treatment
- power wheelchair · Helped a lot
it's a real livesaver for me, couldn't be out without it
In context ↗ - uber rest · Helped
I then have to uber rest to get back to my baseline.
In context ↗
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | ME/CFS with delayed post-exertional malaisePEM is one of the key indicators in CFS. For me, it starts the morning after exertion, but can be delayed by a day or soIn context ↗ | Severe |
| 2023-10-17 | needs a power wheelchair for any outingFeel the same about my power wheelchair, it's a real livesaver for me, couldn't be out without it, but I hate being in it, it sucks to be chair bound when out.In context ↗ | Severe |
| 2024-05-27 | bought a handheld gaming PC to game from the sofa or bedNow I can still game from the sofa or bed. A real game changer, excuse the pun :)In context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
For me, it starts the morning after exertion, but can be delayed by a day or so
In context ↗