Housebound and largely bedbound with ME/CFS, now walking and doing yoga after reassurance
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2 years
- Last post
- Jun 2023
In their words
- Condition: ME/CFS
The illness fitted all the criteria of ME/CFS and was defined by post-exertional malaise
In context ↗ - At worst: Severe
I lived with severe ME/CFS for almost 2 years that left me not only housebound but largely bedbound.
In context ↗ - Now: Near normal
It’s been about 6 weeks now since I first regained most of my mobility and I have been visiting friends and going for proper walks and even doing active yoga from home while I work on my fitness.
In context ↗ - Began after: stress or burnout
The illness was in fact the result of being overwhelmed in some respect.
Read from 3 of their posts and comments; links to the one this page draws on
Summary
Coast 90232 was housebound and largely bedbound with severe ME/CFS for almost two years, with post-exertional malaise, poor sleep, cognitive problems and sensory sensitivity. After a private specialist's advice, they began reassuring themselves they were safe whenever symptoms arose; within days they could leave the house alone. Six weeks on they were walking, doing yoga and seeing friends, and seeing a therapist for anxiety.
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What they tried
What they credit
Their words about each treatment
- artichoke extract · Helped
I took artichoke extract which I believe was helpful.
In context ↗ - digestive enzyme supplement · Helped
started taking a digestive enzyme supplement with meals ... my digestion seemed much healthier
In context ↗ - moving into a new, quiet room · Helped
this room was nice, quiet and had a lovely view of trees, as well as access to a balcony
In context ↗ - sitting on a chair on the balcony for a few minutes each day · Helped
he would advise me to sit on a chair on the balcony for a few minutes each day and build up tolerance
In context ↗ - reassuring myself that I was safe · Helped a lot
after a few days of saying this to myself every time symptoms arose, the progress was undeniable
In context ↗ - pacing · Helped
I now know that being kind to myself as I adjust and going at a slower pace is important
In context ↗ - therapist · Helped
I am certainly in a better position now, supported by a therapist and working through my issues
In context ↗ - guided meditations · Not said
Her meditations offer support to healing, body and mind
In context ↗
Approaches: CBT & mindset · Brain retraining · Mould avoidance · Physiotherapy and rehab · Supplements
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. 1 step has no time and sits in story order between the steps around it. 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 |
|---|---|---|
| onset | became ill with ME/CFS after living independently and going to the gymI lived with severe ME/CFS for almost 2 years that left me not only housebound but largely bedbound.In context ↗ | Severe |
| during the illness | largely bedbound; only able to get to the bathroom, cared for by mumFor months at a time the most I could do was get to the bathroom – sometimes having to take a break on the way.In context ↗ | Severe |
| almost two years into the illness | after a private specialist's advice, reassuring themselves they were safe stopped symptoms risingFor the first time in almost 2 years I felt that I could sit in a chair for as long as I wanted.In context ↗ | Moderate |
| 3 days after starting self-reassurance | able to leave the house alone, take a taxi and visit brotherWithin 3 days of reassuring myself that I was safe every time symptoms arose I was able to leave the house by myself, get a taxi and go visit my brother.In context ↗ | Mild |
| soon after the first big improvements | mania and sleeplessness, then anxiety about relationships and life stressesI began to feel manic: I now had too much energy and couldn’t sleep at all!In context ↗ | Not stated |
| about 6 weeks before the post | most mobility regained; visiting friends, proper walks, active yoga, pacing sensibly, therapy for anxietyIt’s been about 6 weeks now since I first regained most of my mobility and I have been visiting friends and going for proper walksIn context ↗ | Near normal |
Adverse events
- Graded rehab and self-made programmes“I went to sit in a chair – noticing that my symptoms were rising” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
post-exertional malaise which occurred if I tried to do a great number of things, including watching films
In context ↗ - Sleep problems
I also had difficultly sleeping, which is another typical symptom.
In context ↗ - Brain fog
I suffered from some cognitive dysfunction during the illness which left me struggling to read things of any length
In context ↗ - Light & noise sensitivity
Often I also suffered from light and noise sensitivity.
In context ↗ - Gut problems
I had been suffering from mild constipation for some time
In context ↗ - Anxiety & low mood
I began to experience anxiety
In context ↗
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