Bedridden with ME/CFS, now much better after leaving an abusive husband
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 12 years
- Last post
- May 2026
In their words
- Condition: ME/CFS
CFS is one of the hardest conditions I’ve been diagnosed with.
In context ↗ - At worst: Very severe
I was bedridden with this horrific condition and would sleep until anybody woke me for food or to tell me to drink something
In context ↗ - Now: Much better
I am now not bedridden and I’m not even housebound. I’m able to travel out on my mobility scooter to the shops and even go out to a concert a few times a year
In context ↗
Read from 17 of their posts and comments; links to the 9 this page draws on
Summary
Heron 98620 has had ME/CFS for about 12 years, with fibromyalgia and chronic pain. She was bedridden for close to two years while with an abusive husband and needed to be woken for food or drink. After leaving she improved: she is no longer bedridden or housebound, uses a mobility scooter for shopping and occasional concerts, and still rests almost all day. Pain, poor sleep and heat sensitivity remain.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- therapy · Not said
I’m back at therapy again (since I was 18 and I’m now 43)
In context ↗ - sleeping pills · Not said
I had pills to send me to sleep and then wake me up ... I only have one sleeping pill a night
In context ↗ - mobility scooter · Helped a lot
It’s saved my life, my sanity, after being bed-bound for 2 years
In context ↗ - melatonin · Worse
When I took that I was buzzing and racing around without sleeping all night
In context ↗ - weight loss group · Worse
going into my group to try and lose weight so I’m healthier puts me in bed for two days
In context ↗ - morphine · Helped
I only need morphine a few times a week
In context ↗ - ice cube making machine and cooling blanket · Helped
just having ice cold water in my faux Stanley has been incredible, I also purchased a cooling blanket and somehow that’s working too
In context ↗ - sleeping less in one go · Not said
I’ve been forcing myself to sleep less in one go
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 6 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 |
|---|---|---|
| about 2013 (12 years before March 2025) | ME/CFS began after a second pregnancywe thought my problems were because of my second pregnancy which was pretty bad but when it didn’t go away and I just got worse and worseIn context ↗ | Not stated |
| after divorce, about 6 years before May 2025 | bedridden for close to two years after divorceafter my divorce, I was absolute bed ridden and since then I have fought with everything I have to be up as much as I canIn context ↗ | Very severe |
| by May 2025 | no longer bedridden or housebound; mobility scooter, shops and occasional concertsthankfully after getting divorced from an abusive man I have been out of bed for 3 1/2 out of the 6 years since.In context ↗ | Moderate |
| 2026-05-30 | heat limiting summer plans; still rests in bedthis heat is going to destroy any plans I had of doing anything this summerIn context ↗ | Moderate |
Adverse events
- Melatonin“When I took that I was buzzing and racing around without sleeping all night” In context ↗ Insomnia from treatment
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
after a trip out on Friday I wasn’t able to get out of bed all week
In context ↗ - Sleep problems
I will sleep 12 hours at night sometimes if I’m not woken I can sleep all the way through until 6 pm.
In context ↗ - Pain & fibromyalgia
I also have fibromyalgia, cognitive regional pain syndrome, functional neurological disorder, trigeminal neuralgia
In context ↗ - Anxiety & low mood
personally having depression doesn’t help
In context ↗ - Neuropathy & tingling
trigeminal neuralgia
In context ↗ - Temperature regulation
this heat is going to destroy any plans I had of doing anything this summer
In context ↗
Ask Miruvor AI
Similar stories
-
Not enough detail to draw a path
Mostly housebound with ME/CFS fatigue and brain fog, somewhat better; cane helps standing
Orchid 23158 linked an ME-like illness to a late-2021 cycling accident and concussion, though unsure whether COVID or concussion triggered it, and had long struggled with chronic fatigue. Years on they were still undiagnosed and mostly housebound with…
-
Mostly housebound with ME/CFS, somewhat better with nortriptyline and fludrocortisone
Mesa 97770 fell ill with ME/CFS around 2012 and was mostly housebound, with severe muscle pain, brain fog, POTS and post-exertional malaise. Nortriptyline eased her brain fog early on; later fludrocortisone and midodrine controlled her POTS and a mobility…