Mostly housebound with ME/CFS, now much better with pacing and an electric wheelchair
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- May 2024
In their words
- Condition: ME/CFS
I have mild ME as well as POTS!
In context ↗ - At worst: Moderate
Onset: Moderate
In context ↗ - Now: Much better
I have mild ME as well as POTS!
In context ↗ - Began after: glandular fever or EBV
After my mono infection (didn't know what it was until after and it showed in my bloodwork lol)
Read from 13 of their posts and comments; links to the 8 this page draws on
Summary
A trans man who fell ill with ME at 20 after a mono infection, starting moderate and mostly housebound. He recovered fully once, then relapsed months later and stayed mild-moderate. He credits pacing from the start and a folding electric wheelchair with stabilizing him, and pregnancy later made his ME extremely mild, though his POTS worsened after stopping beta blockers. By May 2024 he called his ME mild.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Helped
This is after diligent pacing, half out of choice and half out of necessity.
In context ↗ - beta blockers · Helped
it's worse than it was on meds [because I had to stop my beta blockers], but it's better than it was prior to starting medication
In context ↗ - Fold&Go Magshock folding electric wheelchair · Helped a lot
It made the difference between me being housebound and going outside to the park, events, and theme parks with my friends and family.
In context ↗ - custom ultralightweight manual wheelchair · Helped
it's been getting better now that I've gotten my new wheelchair though, I am able to go out and into stores without crashing
In context ↗
Approaches: 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. 2 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2021 | ME onset after a mono infection• Onset: ModerateIn context ↗ | Moderate |
| 2021 | recovered fully after the mono infectionthen I recovered fullyIn context ↗ | Recovered |
| 2021-2022 | illness reactivated suddenly months after recoveringmonths later it reactivated, I became sick suddenlyIn context ↗ | Moderate |
| 2022-11 | got a folding electric wheelchairIt made the difference between me being housebound and going outside to the parkIn context ↗ | Mild |
| 2023-2024 | pregnancy made his ME extremely mildpregnancy has pretty much told ME to fuck offIn context ↗ | Mild |
| 2024-05-25 | mild ME, ambulatory wheelchair userI have mild ME as well as POTS!In context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I have PEM still, but bigger crashes that get me stuck in bed
In context ↗ - Brain fog
combined with brain fog, lead limbs
In context ↗ - POTS & dysautonomia
I have mild ME as well as POTS!
In context ↗ - Muscle weakness
Or with my muscle weakeness, how will I hold my kid?
In context ↗ - Headaches & migraine
sometimes headaches with sensitivity to sound/noise/movement
In context ↗ - Pain & fibromyalgia
full body aches, difficulty moving
In context ↗ - Flu-like symptoms
sometimes headaches with sensitivity to sound/noise/movement, fever, etc.
In context ↗ - Sleep problems
I'll become [seemingly] suddenly & extremely exhausted and have a hard time staying awake
In context ↗
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