Long periods horizontal with ME/CFS, somewhat better with pacing and a heart rate monitor
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jul 2026
In their words
- Condition: ME/CFS
i got ebv at 34 and lost a career and a husband while horizontal. that electric feeling wants you to sprint but the pem bill is brutal.
In context ↗ - At worst: Severe
i got ebv at 34 and lost a career and a husband while horizontal.
In context ↗ - Now: Somewhat better
social life came back like a dimmer switch when i let people see the current me not the old one.
In context ↗ - Began after: glandular fever or EBV
i got ebv at 34
Read from 1 of their posts and comments; links to the one this page draws on
Summary
Crocus 41030 developed ME after an EBV infection at age 34 and spent long periods horizontal, losing a career and a husband. Rest quieted their body, but an urge to run after months of rest led to a yearlong crash. Since then they have paced using a heart rate monitor, keeping new activity under five minutes with two days of rest afterwards, and their social life returned gradually. Post-exertional malaise still limits them.
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What they tried
What they credit
Their words about each treatment
- rest · Helped
trust the rest that built this up not the sudden jolt
In context ↗ - heart rate monitor and keeping anything new under five minutes · Not said
i use a heart rate monitor now and keep anything new under five minutes with two days of nothing after to check for delayed payback
In context ↗
Approaches: Radical rest
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| age 34 | EBV infection, bedbound/horizontal, lost career and husbandi got ebv at 34 and lost a career and a husband while horizontalIn context ↗ | Severe | |
| — | yearlong crash after an urge to run following months of restthe false hope that tricked me into a yearlong crashIn context ↗ | Severe | |
| 2026-07-04 | paced with a heart rate monitor; social life gradually returnedsocial life came back like a dimmer switch when i let people see the current me not the old oneIn context ↗ | Mild | Pacing and the energy envelope |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
the pem bill is brutal
In context ↗
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