Severe ME, somewhat better but still mostly housebound after being careful with her body
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 35 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I have had CFS for 35 years now
In context ↗ - At worst: Severe
It was not listening to my body that got me into the severe CFS state originally!
In context ↗ - Now: Somewhat better
Now less severe, but only because I am much more careful about what I put my body through.
In context ↗
Read from 21 of their posts and comments; links to the 13 this page draws on
Summary
Plover 14648, a 56-year-old woman in the UK, has had ME for 35 years and later reached a severe state by not listening to her body. Becoming careful about what she puts her body through left her less severe but still mostly housebound, and she also has fibromyalgia and Crohn's disease. Colectomy and stoma surgery in 2026 were followed by a very slow recovery on her low ME baseline.
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What they tried
What they credit
Also tried
Their words about each treatment
- HRT (oestrogen & progesterone) · Helped
I'm on HRT (oestrogen & progesterone) ... I am probably better health-wise for being on HRT
In context ↗ - amitriptyline · Helped
I'm on amitriptyline. I guess it helps a bit.
In context ↗ - stoma surgery (colectomy, small bowel resection, ileostomy) · Helped a lot
My stoma saved my life. It's certainly a fair bit of work along with my ME but better than battling my dodgy digestive system
In context ↗ - prednisolone · Not said
I started off at 40mg per day several weeks ago and I have tapered down to 20mg, but it's not enough to control the Crohn's
In context ↗ - Transcendental Meditation · Not said
I also practice Transcendental Meditation.
In context ↗ - counselling · Not said
Counselling can be mixed. Not all counsellors are very well-trained - some years ago I had a really judgemental counsellor
In context ↗ - online CoDA (Co Dependents Anonymous) meeting · Not said
I try and get to the occasional online CoDA (Co Dependents Anonymous) meeting.
In context ↗ - pacing · Helped a lot
It was not listening to my body that got me into the severe CFS state originally! Now less severe, but only because I am much more careful
In context ↗ - Flu vaccine · Not said
The only reaction I normally get to the flu jab is a very sore arm for a few days.
In context ↗ - COVID vaccination as treatment · Not said
The Covid one is a different story - I get aches, fevers, shaking and a headache along with the sore arm.
In context ↗
Approaches: Pacing · Sex hormones
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 first step with a time is 34 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | reached severe CFS state by ignoring her body's limitsIt was not listening to my body that got me into the severe CFS state originally!In context ↗ | Severe | |
| — | less severe after becoming careful about what she puts her body throughNow less severe, but only because I am much more careful about what I put my body through.In context ↗ | Moderate | Pacing and the energy envelope |
| February 2026 | colectomy, small bowel resection and permanent stoma; very slow recovery4 months ago I had to had my colon removed & a permanent stoma placed. My low baseline due to the ME meant that my recovery has been very slow.In context ↗ | Moderate | |
| 2026-08-30 | still mostly housebound, recovering from surgeryIt's the pits being mostly housebound but there's no reason why I can't entertain myself (within limits) while I'm stuck here!In context ↗ | Moderate |
Adverse events
- Flu vaccine“The only reaction I normally get to the flu jab is a very sore arm for a few days.” In context ↗ Side effects
- COVID vaccination as treatment“The Covid one is a different story - I get aches, fevers, shaking and a headache along with the sore arm.” In context ↗ Side effects
- Other surgery (adrenal, lung, venoplasty)“the surgeries have been brutal and taken me ages to recover from” In context ↗ Other
- Corticosteroid pulses“I haven't noticed any unbearable side effects from the pred but I agree it makes it very hard to relax properly & gives me palpitations.” In context ↗ Heart rhythm problems
- Corticosteroid pulses“I suspect the prednisolone is making me grumpier, too.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Brain fog
I'm sure it was contributing to my fatigue & brain fog
In context ↗ - POTS & dysautonomia
I already have vertigo.
In context ↗ - Sleep problems
My sleep is awful - I tend to get to sleep very late and sleep all morning.
In context ↗ - Pain & fibromyalgia
Along with Ulcerative Colitis I also have ME/CFS and fibromyalgia!
In context ↗ - Gut problems
I have gastroparesis and my large intestine just stopped working
In context ↗ - Light & noise sensitivity
The lights, the noise - it's unbearable.
In context ↗ - Heart symptoms & palpitations
trying to cope with him and heart palpitations
In context ↗ - Anxiety & low mood
I am bad tempered, angry, miserable and just plain exhausted.
In context ↗ - Tinnitus
I also have very loud tinnitus which is very distracting.
In context ↗
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