Bedridden with long COVID, now much better but still limited; pacing and rest help
- Condition
- Long COVID
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 5 years
- Last post
- Oct 2025
In their words
- Condition: Long COVID
After five years, I still deal with constipation.
In context ↗ - At worst: Very severe
I stayed in bed for months because light and sound were so hard to tolerate.
In context ↗ - Now: Much better
Not bad as before but still some struggles that I now accept probably won’t go away.
In context ↗ - Began after: COVID
It is probably LC. It attacks the gut causing those symptoms
Read from 12 of their posts and comments; links to the 12 this page draws on
Summary
Creek 59572 has had long COVID since 2020 and spent months bedridden, unable to tolerate light or sound, rebuilding activity by sitting up for seconds a day. By late 2024 she was better but still limited: she cannot work and is on SSDI, rests one to two days before chores and does one activity a day. Constipation, memory worries and occasional muscle twitches remain; pacing, rest, therapy and meditation help her manage.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- Hemorrhoid pads · Helped
Hemorrhoid pads soothe and help.
In context ↗ - new diet plans · Not said
we’ve developed new diet plans and made adjustments that we have to permanently adhere to in order to have a somewhat clean, well-behaving gut
In context ↗ - Magnesia / magnesium · Helped
Sometimes, magnesium helps. Sometimes, it doesn’t.
In context ↗ - Ajovy · Helped
Magnesia and Ajovy.
In context ↗ - own PT: sitting up five seconds a day, then standing and walking · Helped a lot
And then I would work on sitting up for five seconds a day. That grew to 10, 30, and then a minute.
In context ↗ - rigid chore planning with rest in between, naps and lying down · Helped
I also plan my chores rigidly so that I can have time to rest in between.
In context ↗ - sports bras · Helped
Wrote a piece about this recently and went to Walmart to pay homage to sports bras.
In context ↗ - Aquaphor · Helped
Aquaphor for skin, lips, feet, and elbows help with MAST Cell dryness and eczema.
In context ↗ - Stool softeners · Helped
Stool softeners make my life easier.
In context ↗ - homemade electrolyte drink · Helped
Making my own electrolyte drink.
In context ↗ - therapy · Helped
Lots of therapy and meditation.
In context ↗ - meditation and deep breathing · Helped
Lots of therapy and meditation. ... Deep breathing.
In context ↗ - weighted blanket · Helped
Love my weighted blanket.
In context ↗ - Paxlovid · Worse
Paxlovid caused a horrible reaction.
In context ↗ - melatonin · Helped
Yep. Works most nights but our adrenaline keeps us up sometimes
In context ↗
Approaches: Pacing · Physiotherapy and rehab
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 | bedbound for months, unable to tolerate light or soundI stayed in bed for months because light and sound were so hard to tolerate. I kept a bucket by my bedside and sometimes I used wipes to clear my lady parts and underarms.In context ↗ | Very severe |
| — | rebuilt sitting, standing and walking seconds at a timeI would work on sitting up for five seconds a day. That grew to 10, 30, and then a minute. I did that every single days for weeks until I could sit in a chair. I stood up until I could walk.In context ↗ | Moderate |
| 2024-10-30 | better than before but still limited, cannot workNot bad as before but still some struggles that I now accept probably won’t go away. ... Can’t work still so I’m on SSDI.In context ↗ | Moderate |
Adverse events
- Paxlovid / nirmatrelvir“Paxlovid caused a horrible reaction.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Gut problems
After five years, I still deal with constipation.
In context ↗ - Light & noise sensitivity
I stayed in bed for months because light and sound were so hard to tolerate.
In context ↗ - Brain fog
And I’m a bit worried about my memory.
In context ↗ - Headaches & migraine
Magnesia and Ajovy.
In context ↗ - Sleep problems
Works most nights but our adrenaline keeps us up sometimes so there are nights when you’re just gonna be up.
In context ↗
Ask Miruvor AI
Similar stories
-
Unable to walk around house with long COVID, much better after pacing and antihistamines
A Canadian man with long COVID for about three years was unable to walk around the house for the first two years, with constant migraines, brain fog and PEM. From year three, pacing, rest, stress reduction, H1/H2 antihistamines, hydroxyzine for sleep,…
-
ME/CFS at rock bottom, now much better but still often in bed with pacing
Cedar 14930 has had ME/CFS for over 30 years, with a sudden flu-like onset, and deteriorated until hitting rock bottom around 11 years before 2020; since then they have improved but remain far from well, often spending 16–23 hours a day in bed and unable to…
-
Bedridden with long COVID for three years, now nearly back to normal with time and pacing
Caught COVID in December 2019, before lockdown, and was mostly bedridden for three years as symptoms worsened. From year three she improved slowly, crediting time, rest, pacing, a gradual walking programme, daily antihistamines and gabapentin. A 2023…
-
ME/CFS after COVID, more disabled by overwork, now somewhat better with pacing, wheelchair
After COVID-19 in 2020 she was still teaching theatre 20-30 hours a week; overworking for 8-10 weeks in summer 2024 left her more disabled, never back to baseline, now working four hours a week and using a wheelchair. Pacing, rest breaks and a wheelchair…