Long COVID with stroke, unable to cook or do dishes, much better after pacing and rest
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 17 months
- Last post
- Feb 2024
In their words
- Condition: Long COVID
Longhauler since April 2021.
In context ↗ - At worst: Severe
I was wore out after showering. I had to lay down for a few hours ... I would need a wheelchair b/c of how slow I move
In context ↗ - Now: Much better
I'm better than what I was, but, not even 70%.
In context ↗ - Began after: COVID
April 2021, dealing with long covid.
Read from 10 of their posts and comments; links to the 9 this page draws on
Summary
Comet 97984 developed long COVID in April 2021, with a mini TIA stroke during the infection; they relearned to walk and gave up their businesses. They could not do dishes or cook and would need a wheelchair to return to a workplace. Pacing, rest, physical therapy and CBT brought slow gains; by September 2022 they walked about 20 minutes and rated themselves under 70%. By early 2024 they were doing Pilates and low-impact cardio, though memory problems remained.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing (take it slow, spread out tasks, self care) · Helped
Ur body will start to build up. That's what I've done. I have less bad days now.
In context ↗ - physical therapy · Not said
I had to rely on my family to take me to physical therapy. I can walk for about 20 minutes now.
In context ↗ - changed my diet · No change
I changed my diet, but, did not notice a difference.
In context ↗ - Booster · Worse
Got the Booster 3 weeks ago. I felt horrible for 6 days.
In context ↗ - keeping a journal · Helped
Best thing I ever did was keeping a journal. That growth is encouraging.
In context ↗ - Cognitive behavioral therapy · Helped
Cognitive behavioral therapy has blessed me.
In context ↗ - Pilates and low impact cardio · Helped
Exercise actually helps me with my CFS. Low impact. I do Pilates, and when I'm feeling froggy, I incorporate low impact cardio.
In context ↗
Approaches: CBT & mindset · Exercise and activity · Pacing
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| April 2021 | long COVID after a COVID infectionLonghauler since April 2021.In context ↗ | Severe | |
| 2021 | housebound; could not do dishes or cook, would need a wheelchair for outings; gave up their businessesI couldnt do simple tasks like put dishes away or vacuum. I couldn't make a meal. ... I gave up my businesses.In context ↗ | Severe | |
| 2022-09-01 | fewer bad days after pacing and restListen to ur body, take it slow & easy ... I have less bad days now.In context ↗ | Moderate | Pacing and the energy envelope |
| 2022-09-01 | able to walk about 20 minutes after physical therapyI can walk for about 20 minutes now. But, I walk slow.In context ↗ | Moderate | |
| 2022-09-25 | better than before but still under 70% of their old selfI'm better than what I was, but, not even 70%.In context ↗ | Moderate | |
| 2022-12-22 | thinking more clearly, memory still poorI have been able to think more clearly, as of late. However, my memory is awfulIn context ↗ | Moderate | |
| 2024-02-23 | doing Pilates and low-impact cardioExercise actually helps me with my CFS. Low impact. I do Pilates, and when I'm feeling froggy, I incorporate low impact cardio.In context ↗ | Mild | Everyday exercise and activity |
Adverse events
- COVID vaccination as treatment“Got the Booster 3 weeks ago. I felt horrible for 6 days.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Brain fog
I also have headaches heart palpitations, serious brain fog
In context ↗ - Heart symptoms & palpitations
I still have bad heart palpatations & shortness of breath while just sitting down.
In context ↗ - Breathlessness
I get out of breath sitting
In context ↗ - Headaches & migraine
I also have headaches
In context ↗ - Gut problems
serious brain fog, nausea
In context ↗ - Pain & fibromyalgia
vertigo & pain thru out my body
In context ↗ - Light & noise sensitivity
I had lots of sensory issues. It was so bad that my family had to whisper around me.
In context ↗ - Muscle weakness
it hurt so bad to lift my arms up, brush my teeth
In context ↗ - Anxiety & low mood
The depression was DARK.
In context ↗
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