Bedbound at times with ME/CFS, now much better with pacing and nicotine patches
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 9 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I’ve been sick for about 7 years and am somewhere in the moderate category for ME—housebound for the most part.
In context ↗ - At worst: Severe
When I think to when I first became disabled by ME/CFS, I struggled to lift a tablespoon of coffee grounds up to the filter basket. I was bedbound at times.
In context ↗ - Now: Much better
I’m not better as in recovered, but oh my goodness am I doing so much better than I was some years ago.
In context ↗ - Began after: another virus
I’d gotten a few flus back to back when my roommate kept bringing them home from her daycare job.
Read from 71 of their posts and comments; links to the 27 this page draws on
Summary
Fell ill in early 2014 at age 22 after back-to-back flus and became bedbound at times; doctor-ordered exercise in October 2015 left her mostly housebound and moderate for years. She credits pacing, magic mushrooms from 2016 and nicotine patches from September 2023 for steady gains, and by 2024 was working full time from home and living independently with a power chair, still ill but much improved.
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What they tried
What they credit
Also tried
Their words about each treatment
- strict avoidance of garlic and onion · Helped
So I got strict with that and not only did my skin clear up, so did my brain fog.
In context ↗ - cannabis (marijuana) · Helped
Weed was the only thing allowing me to eat and sleep at that point
In context ↗ - self-compassion work with a psychologist · Helped
I’ve found this line of self-compassionate thinking really helpful, and I wanted to share.
In context ↗ - salt, fluids and compression socks · Helped
The regular POTS “quick fixes” are only good when I’m not overexerting as well.
In context ↗ - high-protein diet (more meat) · Helped
making sure I get enough protein/red meat
In context ↗ - extra blankets and a heating pad · Helped
extra blankets and a heating pad are wonderful in those times.
In context ↗ - magic mushrooms (psilocybin) · Helped a lot
I had a dramatic improvement after my first large-ish (a few grams) dose, but I definitely never felt like I was in remission
In context ↗ - doctor-ordered exercise · Much worse
That was in October of 2015 and I’ve been solidly in the moderate category (mostly housebound for most of this time, doing a bit better these days) ever since.
In context ↗ - methylated B12 · Helped
consistently supplementing B12 takes care of the PMDD for me
In context ↗ - antihistamines · Helped
I didn’t know if it was all in my head that I feel better overall when I take them
In context ↗ - nicotine patches · Helped a lot
That got me back to my pre-COVID baseline— and even better.
In context ↗ - PPIs · No change
PPIs do nothing at all for my acid issues
In context ↗ - H2 antihistamine · Helped
PPIs do nothing at all for my acid issues but the antihistamines do.
In context ↗
Approaches: H1 antihistamines · Diet · Other drugs and medicines · Supplements
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| early 2014 | became ill after back-to-back flu-like infections at age 22; bedbound at timesI struggled to lift a tablespoon of coffee grounds up to the filter basket. I was bedbound at times.In context ↗ | Severe | |
| October 2015 | crashed after doctor-ordered exercise; solidly moderate and mostly housebound sinceThat was in October of 2015 and I’ve been solidly in the moderate category (mostly housebound for most of this time, doing a bit better these days) ever since.In context ↗ | Moderate | |
| 2016 | first large dose of magic mushrooms; able to walk a few blocks without her walkerMy partner and I went on a short vacation immediately after and I was able to do more than I had in a long time— went and found coffee a few blocks from our hotel without my walkerIn context ↗ | Moderate | |
| 2021 | left an unhealthy relationship, rented a room and took very part-time online workThe end of what turned out to be a very unhealthy relationship gave me a lot of energy back I didn’t know was being drained.In context ↗ | Moderate | |
| February 2023 | COVID-19 infectionYeah, I like to say getting COVID (Feb. ‘23) really “fucked up my shit.”In context ↗ | Moderate | |
| September 2023 | started nicotine patches; baseline rose and she could work more hoursSince September 2023 I’ve slowly but steadily improved my baseline, becoming able to work more hoursIn context ↗ | Moderate | Nicotine patches |
| September 2024 | started a full-time work-from-home jobI’ve just started a full time job from home, a pretty chill call centre gig.In context ↗ | Mild | Nicotine patches |
| May 2026 | working full time and living independently, still disabledI manage working full time and living independently now, after many years of dependenceIn context ↗ | Mild |
Adverse events
- Graded rehab and self-made programmes“ordered me to do it as though nothing was wrong. That was in October of 2015 and I’ve been solidly in the moderate category” In context ↗ Made symptoms worse
- Nicotine patches“Rapid onset severe nausea was my signal I’d gone too high— near immediate relief upon removal.” In context ↗ Side effects
- Nicotine patches“I did have to stop patching some months ago because I couldn’t tolerate even small doses anymore.” In context ↗ Side effects
- Psilocybin (magic mushrooms)“unless I took a tiny bit too much and ended up a bit wobbly ... but am pretty useless day-of” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
if I did get PEM it would go away a lot faster
In context ↗ - Brain fog
I had such bad brain fog it was unreal
In context ↗ - POTS & dysautonomia
I was only diagnosed with POTS about a year ago
In context ↗ - Mast cell (MCAS) & allergies
I do have allergy/histamine issues as well, and have improved such that I rarely experience them
In context ↗ - Sleep problems
Marijuana so I can get enough sleep
In context ↗ - Gut problems
I’ve had appetite problems the entire time I’ve been sick (since early 2014).
In context ↗ - Muscle weakness
If my limbs start feeling heavy, I pull back my activity until I stabilize again.
In context ↗ - Pain & fibromyalgia
My acute phase included vertigo and joint pain so severe I needed to take a puff of weed to get myself downstairs from my bedroom at the time
In context ↗ - Anxiety & low mood
the sudden and intense negative spirals were bewildering until I pieced it together
In context ↗ - Temperature regulation
my heat tolerance seems better as well
In context ↗
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