ME/CFS since about 2015, crashed after outings and worked only an hour a day, no better
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 10 years
- Last post
- Apr 2025
In their words
- Condition: ME/CFS
it doesn't cure cfs unfortunately
In context ↗ - At worst: Moderate
rest 1 hour go go work for 1 hour, push through to take the dog on a walk, rest until 4 ish walk the dog feed the dog sort tea then I'm pretty much wiped out.
In context ↗ - Now: No benefit
I just want to wake up better tomorrow but that'll never happen.
In context ↗
Read from 8 of their posts and comments; links to the 8 this page draws on
Summary
Zephyr 43229 has had ME/CFS since about 2015, diagnosed after eight years of being told to push on. They worked only about an hour a day in term time, rested between short tasks and crashed after outings or swimming. Pacing with an occupational therapist, a fixed routine and slow-cooker meals help; they quit work in late 2024 and describe setbacks alongside some gradual progress.
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What they tried
Also tried
Their words about each treatment
- pushing myself · Worse
I was being told to push myself until my diagnosis around 1.5 years ago so I was obviously doing more damage than good
In context ↗ - pacing · Helped
I find routine is really useful for me to otherwise I'll feel rubbish and then not do anything without a routine.
In context ↗ - chair exercise for elderly · Not said
I've personally tried chair exercise for elderly which are OK 10 minutes in a day for me
In context ↗ - swimming · Worse
I really enjoy swimming but haven't been in months because I do a hour really enjoy myself then just crash
In context ↗ - slow cooker meals · Helped
Slow cooker meals, it takes energy to pop everything in put it on low all day it's almost like having somebody cook for you
In context ↗
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 9.2 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 |
|---|---|---|
| 2015 | became ill, took eight years to get diagnosedit took me 8 years to get diagnosed being told to take vitamin d and to go on holidayIn context ↗ | Not stated |
| 2024-03-10 | living with ME/CFS, crashing after exertionPeople just can't seem to understand that we have tried all that just to be hit with massive crashes.In context ↗ | Moderate |
| 2024-08-08 | crashed after a farmhouse tour and shopping outingGot home yesterday couldn't even make the pizza and I've hardly been able to do anything todayIn context ↗ | Moderate |
| 2024-12-26 | quit work completely a month earlier, adjustingI've quit work completely a month ago and I feel like a failure feeling rough but I know my body will adjust and I will be better off for it.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I do a hour really enjoy myself then just crash
In context ↗ - Muscle weakness
then I'm pretty much wiped out
In context ↗