Severely affected by ME/CFS, now somewhat better and able to take short walks
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 16 years
- Last post
- May 2026
In their words
- Condition: ME/CFS
Balancing radical rest for ME with tricky fibro needs
In context ↗ - At worst: Severe
really ill (severe) at 20 ... I was severe for 5 years
- Now: Somewhat better
I’ve plateaued out to moderate since I was 27. A lot of that has to do with living with my parents as they help so I don’t crash constantly
In context ↗
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
Bluebell 71415 became ill at age 11 and was severely affected from age 20 for about five years, at times unable to walk or feed themselves. Moving in with their parents in their twenties helped them plateau to moderate, where they remained at 32, relying on parents for chores and able to take short walks outside. Fibromyalgia pain makes resting hard and they can crash after overdoing things.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Helped
A lot of that has to do with living with my parents as they help so I don’t crash constantly from putting the washing on or making a sandwich!
In context ↗ - Ozempic · Worse
I came off it as the bloating was making me feel really sick and blah. I just ended up feeling shite and still over eating, then feeling more shite with more GI problems.
In context ↗ - radical rest · Not said
I feel like I’m making myself worse because I’m not resting as much as I need to and feel constantly frazzled like I’m crashing.
In context ↗ - a little baby walk · Helped
I seem to be able to recover from a little baby walk easier than that other type of crash.
In context ↗ - hotty bottles · Not said
there’s only so much hotty bottles can do!
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. The chart starts 9 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| age 11 | started to get illstarted to get ill when I was 11In context ↗ | Not stated |
| age 20 | became severe and stayed so for five yearsreally ill (severe) at 20 ... I was severe for 5 years | Severe |
| age 27 | plateaued to moderate after moving in with parentsI’ve plateaued out to moderate since I was 27. A lot of that has to do with living with my parentsIn context ↗ | Moderate |
| 2026-05-04 | still moderate, able to take small walks but crashes after overdoing itI seem to be able to walk more than I can do anything else physical/mentalIn context ↗ | Moderate |
Adverse events
- Semaglutide (Ozempic, Wegovy)“I came off it as the bloating was making me feel really sick and blah.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
this when I do too much I throw up loads and get really shaky and too tired to move
In context ↗ - Pain & fibromyalgia
the really bad muscle pain I get from fibro
In context ↗ - Neuropathy & tingling
my muscle/nerve/all other flavours of pain gets so bad
In context ↗ - Muscle weakness
so much worse to push yourself into not being able to walk or feed yourself
In context ↗
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