ME/CFS
Severe → no benefitNeeds ongoing treatment
Bedbound with ME/CFS, later illness took their whole life; meditation no help
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Apr 2023
In their words
- Condition: ME/CFS
Using Apple Watch to manage ME?
In context ↗ - At worst: Severe
I am currently bedbound.
In context ↗ - Now: No benefit
this disease took my entire life
In context ↗
Summary
They described having ME/CFS and being bedbound in January 2020, and asked r/cfs how to set up an Apple Watch to warn of a rising heart rate and prompt rest, using the SleepWatch app to track sleep. By April 2023 the illness had taken their entire life; avoiding post-exertional malaise was the best thing they could do for their health, though PEM left them very depressed, and meditation did nothing for them.
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What they tried
Also tried
SleepWatch· HelpedAvoiding pem· Helpedliving well with chronic illness (book)· Helpedmeditation· No changeApple Watch· Not said
Their words about each treatment
- Apple Watch · Not said
My parents very generously gave me an Apple Watch for Christmas
In context ↗ - SleepWatch · Helped
using the app SleepWatch ... which has been somewhat helpful I think
In context ↗ - Avoiding pem · Helped
Avoiding pem is important ... it’s the best thing I can do for my health so I try my best
In context ↗ - living well with chronic illness (book) · Helped
the book living well with chronic illness by the same author is more helpful
In context ↗ - meditation · No change
Honestly, I hate meditation, it doesn’t do shit for me.
In context ↗
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 |
|---|---|---|
| 2020-01-05 | bedbound, setting up an Apple Watch and SleepWatch to manage MEI am currently bedbound.In context ↗ | Severe |
| 2023-04-22 | still ill, resting in bed, avoiding PEMI feel thankful for my bed which is like my nest, it’s cozy and soft and I’m grateful I am able to rest there.In context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Avoiding pem is important, I get very depressed when I have pem.
In context ↗ - Anxiety & low mood
I get very depressed when I have pem.
In context ↗