ME/CFS and unable to work, somewhat better on a rest schedule
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I've been getting PEM a lot less frequently following this schedule
In context ↗ - At worst: Moderate
I cannot work a job. I spend around 5-6 hours out bed a day, but most of that is laying on the couch scrolling/reading.
In context ↗ - Now: Somewhat better
I have made slight physical improvements. I consider myself moderate, i can now leave the house 3-4 times a week now
In context ↗
Summary
Hill 54990 has ME/CFS and cannot work a job. By August 2026 they reported slight physical improvement on a rest schedule: less frequent PEM, five to six hours a day out of bed, three to four outings a week and two to three easy meals prepared, though showering and chores were often too much and they still slept 10-12 hours and had migraines.
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What they tried
What they credit
Also tried
Their words about each treatment
- this schedule · Helped
I've been getting PEM a lot less frequently following this schedule, which id say is an improvement.
In context ↗ - Radical rest · Not said
"Radical rest" is hard as my brain will go miles a minute if im not distracting myself
In context ↗
Approaches: Pacing
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I've been getting PEM a lot less frequently following this schedule
In context ↗ - Brain fog
I feel I do much better cognitively then emotionally or physically
In context ↗ - Headaches & migraine
tho I still get migraines from it
In context ↗ - Sleep problems
I sleep 10-12 hours a night
In context ↗ - Light & noise sensitivity
I am in bed in a dark room
In context ↗ - Anxiety & low mood
Mentally, its a mixed bag. Some days im doing better, others im doing worse.
In context ↗
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