Mostly home and feeling like dying with ME/CFS, somewhat better with pacing and art
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Mar 2022
In their words
- Condition: ME/CFS
My CFS is 40 percent, so I'm mostly home.
In context ↗ - At worst: Moderate
My CFS is 40 percent, so I'm mostly home.
In context ↗ - Now: Somewhat better
I'm convinced I'm feeling better because I factor all that in.
In context ↗
Read from 9 of their posts and comments; links to the 9 this page draws on
Summary
Gull 36235, 43 in 2021, describes CFS keeping them mostly home at a self-rated 40 percent, alongside chronic depression, pain and fatigue. Early on they felt like they were dying; learning pacing and their energy limits, plus Zen ideas, 12-step groups and returning to art, helped them feel alive and hopeful. They note a hot tub can trigger PEM.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Helped
I learned tons about pacing, my energy limits, I adjusted and adapted
In context ↗ - Zen mindfulness · Helped
Zen mindfulness/philosophy/12 steps/emotional growth/support groups/higher power/nature/honesty all saved my caboose.
In context ↗ - 12 step group material of Adult Children of Alcoholics · Helped
For my CFS and PTSD I learned tons using the 12 step group material of Adult Children of Alcoholics
In context ↗ - a tricyclic · Helped
I do take a tricyclic and a muscle relaxant. ... I imagine my other depression meds contribute some toward the better.
In context ↗ - muscle relaxant · Not said
I do take a tricyclic and a muscle relaxant.
In context ↗ - Rest Duty · Not said
I'm putting myself on Rest Duty
In context ↗ - hot tub · Worse
I find a hot tub can cause PEM. Sometimes less heat or less time can help
In context ↗
Approaches: CBT & mindset · Mind-body practices · Other drugs and medicines · Pacing
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. 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 | After |
|---|---|---|---|
| — | felt like dyingI remember that "I feel like I'm dying" feeling.In context ↗ | Not stated | |
| 2021-06-03 | learned pacing and energy limitsSince then I learned tons about pacing, my energy limits, I adjusted and adaptedIn context ↗ | Moderate | Pacing and the energy envelope |
| 2021-10-10 | mostly home at 40%, feels alive and hopefulMy CFS is 40 percent, so I'm mostly home.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
I struggle with chronic depression, pain and fatigue.
In context ↗ - Anxiety & low mood
I have severe mood disorder
In context ↗ - Sleep problems
I wake up ashamed when I need to sleep a lot.
In context ↗ - Post-exertional malaise
I find a hot tub can cause PEM.
In context ↗
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