Housebound with long COVID, improved with pacing then relapsed after a cold
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jan 2024
In their words
- Condition: Long COVID
a couple of months after I had covid
In context ↗ - At worst: Severe
I'm back to spending most of the day in bed
In context ↗ - Now: Relapsed
I managed to walk 5000 steps every day for a week at the start of October, an enormous milestone. A week later I got a cold and I'm back to spending most of the day in bed
In context ↗ - Began after: COVID
a couple of months after I had covid
In context ↗
Read from 14 of their posts and comments; links to the 9 this page draws on
Summary
Petrel 26871 developed long COVID and declined from about 5,000 steps a day to 1,000 steps and housebound by March 2023, needing a wheelchair. Strict pacing from a low of 450 steps built them back to 5,000 steps daily by October 2023, alongside hyperbaric oxygen therapy whose help they could not judge. A cold that month returned them to bed most of the day, and they crashed again over the winter.
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What they tried
What they credit
Also tried
Their words about each treatment
- dehumidifier and heating · Not said
I’ve been keeping a dehumidifier running and the heating on despite the costs to try to keep things in that range. It’s not working too great now winter is setting in…
In context ↗ - pacing · Helped a lot
I’ve founding pacing tremendously helpful too. I’ve spent the last six months building up from 450 steps to 5000 steps a day
In context ↗ - wheelchair · Helped
it’s made this round with being otherwise housebound a lot less miserable for me because friends can pick me up and take me places in the neighborhood
In context ↗ - nicotine patches · No change
Day 3, 7mg patches. Not noticed a damn thing yet.
In context ↗ - hookworms · Worse
I had them once and the paranoia never goes away
In context ↗ - hyperbaric oxygen therapy · Not said
I’ve also been doing hyperbaric oxygen therapy. No idea if or how much it’s helping.
In context ↗
Approaches: 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 |
|---|---|---|---|
| onset | COVID infection followed by long COVIDa couple of months after I had covidIn context ↗ | Not stated | |
| 2022-11 | Pacing, managing about 3,000 steps a dayusually i make it to about 3000 steps before i have difficulty increasing.In context ↗ | Moderate | Pacing and the energy envelope |
| 2023-03 | Decline with repeated relapses at a lower exertion thresholdnow I’m holding steady at 1000 and housebound.In context ↗ | Severe | |
| 2023-04 | Lowest point, down to about 450 steps a dayI’ve spent the last six months building up from 450 steps to 5000 steps a dayIn context ↗ | Severe | |
| 2023-10 | Built back up to 5,000 steps a day with strict pacingI managed to walk 5000 steps every day for a week at the start of October, an enormous milestone.In context ↗ | Moderate | Pacing and the energy envelope |
| 2023-11 | Crashed after a cold, back to most of the day in bedA week later I got a cold and I'm back to spending most of the day in bedIn context ↗ | Severe | |
| 2024-01 | Crashed again over the winteras i was somehow surprised to crash this winterIn context ↗ | Severe |
Adverse events
- Helminth and hookworm therapy“I had them once and the paranoia never goes away” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
each time I relapse it’s at a lower threshold of exertion than before
In context ↗
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