Mostly bedbound with ME/CFS, now much better with pacing and rest
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 2 years
- Last post
- May 2025
In their words
- Condition: ME/CFS
I’m wondering if there’s anything I can add to my room or house that would make my life easier with ME/CFS.
In context ↗ - At worst: Very severe
I don’t think i’m V/extremely severe anymore but when I was I really didn’t do anything..at all..
In context ↗ - Now: Much better
I’m not entirely housebound anymore but i cant be out for more than 2 hours really. And i still rely on my wheelchair whenever i am out.
In context ↗ - Began after: nothing they could name
I was very good at pushing myself ... Im sure thats what made me sick
Read from 9 of their posts and comments; links to the 6 this page draws on
Summary
Maple 62697 fell ill in summer 2023 at age 15, sleeping 20 hours a day and fainting when not in bed. By late 2023 they were too weak to hold a fork and could not get up off the floor after PE; during their severe period they were mostly bedbound. No treatment is named; they learned to pace and rest, and by May 2025 they were no longer entirely housebound, though still using a wheelchair outdoors and unable to be out more than two hours.
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What they tried
What they credit
Their words about each treatment
- pushing through school and activities · Much worse
i was very good at pushing myself, i got through 2 full years of being very very sick but staying at the same level as everyone else. Im sure thats what made me sick
In context ↗ - daily naps and rest periods · Helped
after a 1-2 hour nap i feel much better
In context ↗ - avoiding being up and active · Not said
I simply avoid being up and active too much because it leaves me paralysed in pain during the night
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| Summer of 2023 | fell ill at 15; in bed 20 hours a day, falling asleep or fainting when not in bedI was asleep/in bed 20h a day and would fall asleep or faint when i wasntIn context ↗ | Severe |
| late 2023 | collapsed after school; too weak to hold a fork, could not get up off the floor after PEi became so weak i couldnt hold the fork up anymoreIn context ↗ | Very severe |
| 2024-11-21 | clearly better, out of school, knows how to manage the dayIm definitely better now.In context ↗ | Moderate |
| 2025-05-05 | no longer housebound; out up to 2 hours, still uses a wheelchair outdoorsI'm not entirely housebound anymore but i cant be out for more than 2 hours really.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
pushed through what i now know was PEM
In context ↗ - Brain fog
i dont remember much at all nowadays
In context ↗ - POTS & dysautonomia
would fall asleep or faint when i wasnt
In context ↗ - Sleep problems
I was asleep/in bed 20h a day
In context ↗ - Pain & fibromyalgia
it leaves me paralysed in pain during the night
In context ↗ - Muscle weakness
i became so weak i couldnt hold the fork up anymore
In context ↗ - Headaches & migraine
straining my eyes/giving me headaches
In context ↗ - Anxiety & low mood
I had just recovered from depression and an eating disorder half a year ago
In context ↗
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