ME/CFS: unable to work full-time, remission, relapse, now housebound; pacing helps crashes
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 29 years
- Last post
- Oct 2025
In their words
- Condition: ME/CFS
I'm housebound with CFS
In context ↗ - At worst: Moderate
I'm basically now housebound
In context ↗ - Now: Relapsed
I did, for a few years. ... By the end of 2013 I couldn't work any more, and since then things have gradually gotten worse.
In context ↗ - Began after: nothing they could name
Mine was gradual onset.
Read from 37 of their posts and comments; links to the 18 this page draws on
Summary
Alder 62449 developed gradual chronic fatigue in 1996 at university, could not work full-time and spent years on benefits. A remission from around 2005 allowed full-time work, gym visits and hour-long walks until fatigue returned around 2013, ending work that year. Since then they have become housebound, resting much of the day and rarely leaving home, though pacing keeps crashes down. A vaccine wiped them out for a couple of days, though they were unsure how much was the vaccine and how much was exertion.
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What they tried
What they credit
Also tried
Their words about each treatment
- Energy drinks · Helped
I find them occasionally useful, but more than one in one day ... just seems to raise my heart rate and nothing else.
In context ↗ - e-Bike · Helped
It's given me a lot of mobility, and I can get places that would require a couple of bus rides otherwise.
In context ↗ - Pomodoro timer (five minutes on, 25 off) · Helped
The 5 every 30 generally works pretty well, so long as I don't do anything too mentally demanding in between.
In context ↗ - Scheduled rest in a dark room · Helped
I've also started to have a scheduled rest each day, lying still in a dark room. That's been helping.
In context ↗ - Cane / walking stick · Helped
I've found it helps, for me, certainly. I can definitely walk further with a cane than without.
In context ↗ - Diet change / portion control · No change
I've not felt it have any sort of effect on my CFS one way or the other.
In context ↗ - Anadin Extra · Helped
I have found a medication that works (Anadin Extra)
In context ↗ - COVID vaccine · Not said
I'm housebound with CFS, got the vaccine, was wiped out for a couple of days after
In context ↗ - Cold gel pack / gel headband · Helped
About the only thing that seems to help is a cold gel pack on my head.
In context ↗ - VR headset · Helped
I've found that I'm better able to watch narrative shows in VR, which I normally find very hard.
In context ↗
Approaches: Pacing · Radical rest
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 |
|---|---|---|
| 1996 | gradual onset in final year at university; could not do all-nightersI started getting symptoms in 1996. ... found that I couldn't do all-nighters any moreIn context ↗ | Mild |
| 2005 | remission: working full-time, gym, hour-long walksBy 2005 I was working full-time, and around 2012 I was going to the gym fairly regularly.In context ↗ | Recovered |
| 2013 | fatigue returned, energy drinks stopped working, had to stop workBy the end of 2013 I couldn't work any more, and since then things have gradually gotten worse.In context ↗ | Moderate |
| 2020-04 | became housebound after weekly shoppingI'm basically now housebound - I found I couldn't justify how badly going for my weekly shop affected me.In context ↗ | Moderate |
| 2025-10-03 | still housebound, using VR to watch showsI've found that I'm better able to watch narrative shows in VR, which I normally find very hard.In context ↗ | Moderate |
Adverse events
- Energy drinks (Red Bull)“more than one in one day (not *in a row* that would be stupid) just seems to raise my heart rate and nothing else.” In context ↗ Heart rhythm problems
- COVID vaccination as treatment“got the vaccine, was wiped out for a couple of days after” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Too much exertion *makes us worse*, not better.
In context ↗ - Brain fog
if I do too much brain work, I find the front of my head feel like my brain is swelling
In context ↗ - Pain & fibromyalgia
But now my arms hurt, my back hurts, my legs hurt
In context ↗ - Breathlessness
getting up to get the mail has me gasping for breath
In context ↗ - Sleep problems
even when I get 7+ hours of sleep I don't feel any different to when I get 5 or less
In context ↗ - Headaches & migraine
I've had migraines my whole life
In context ↗ - Gut problems
I did, but changed my diet slightly and everything changed.
In context ↗ - Light & noise sensitivity
the way the headset blocks out periferal vision appears to help with having Too Much Light
In context ↗
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