Housebound with ME/CFS, now somewhat better after stopping work
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 4 years
- Last post
- Oct 2022
In their words
- Condition: ME/CFS
even that becomes to much and the PEM kicks in
In context ↗ - At worst: Moderate
I very rapidly went from mild to moderate.
In context ↗ - Now: Somewhat better
once I stopped working I realised how much health improved and that perpetually living in a crash was not doing me any favors
In context ↗
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
The user got sick at 18, pushed through the fatigue and quickly went from mild to moderate ME/CFS, later describing themselves as housebound. They were diagnosed four years later and, after being laid off during covid and stopping work, noticed their health improve. Exercise beyond walks and stretching triggered PEM, and they watched their sugar intake because of their arthritis.
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What they tried
What they credit
Also tried
Their words about each treatment
- pushing through the fatigue · Much worse
When I first got sick I tried pushing through the fatigue and it made me sicker. I very rapidly went from mild to moderate.
In context ↗ - walks · Not said
The only thing I can manage now is walks, which I do because it helps my arthritis.
In context ↗ - isolated strengthening · Worse
I've tried isolated strengthening but even that becomes to much and the PEM kicks in
In context ↗ - stretching · Not said
most I can do routinely is stretching.
In context ↗ - stopping work · Helped
once I stopped working I realised how much health improved and that perpetually living in a crash was not doing me any favors
In context ↗ - social media detox · Helped
I feel less stressed and like I'm able to rest easier
In context ↗ - cutting down refined sugar · Not said
I'll notice my inflammation gets noticeably worse after eating a lot of sugar ... I'll just try get it from fruits instead of refined sugar
In context ↗ - super low calories · Not said
I have to go super low with my calories to lose weight
In context ↗ - lite n easy · Not said
I currently use lite n easy because I don't have spoons for cooking
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. 1 step has no time and sits in story order between the steps around it. 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 |
|---|---|---|
| age 18 | got sick at age 18I got sick at 18 when I was living at homeIn context ↗ | Mild |
| — | pushed through the fatigue and worsened from mild to moderateWhen I first got sick I tried pushing through the fatigue and it made me sicker. I very rapidly went from mild to moderateIn context ↗ | Moderate |
| 4 y | stopped working after being laid off and noticed health improvegot laid off bcos of covid, and once I stopped working I realised how much health improvedIn context ↗ | Moderate |
| 2022 | housebound, manages walks and stretchingBeing so housebound it's like, having social connection is really importantIn context ↗ | Moderate |
Adverse events
- Everyday exercise and activity“I've tried isolated strengthening but even that becomes to much and the PEM kicks in” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
even that becomes to much and the PEM kicks in
In context ↗ - Pain & fibromyalgia
I have arthritis and I'll notice my inflammation gets noticeably worse after eating a lot of sugar
In context ↗
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