Bedbound at first with ME/CFS, now much better with pacing and medical marijuana
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 16 years
- Last post
- Nov 2025
In their words
- At worst: Severe
i could barely brush my teeth, converse with family and any physical activity was impossible
In context ↗ - Now: Much better
I am mild to moderate and can walk 1.5km 5 days out of 7, but there are times I can't get out of the house
In context ↗ - Began after: nothing they could name
When I first took sick, 14 years ago, I was bed bound
In context ↗
Read from 23 of their posts and comments; links to the 16 this page draws on
Summary
Prairie 59869 fell ill around 2009 and was bedbound at first, barely able to brush their teeth or talk to family. Over the years they improved to mild-to-moderate, having worked four days a week and walked up to 3 km, with stretching, pacing, a Garmin watch and medical marijuana for sleep and pain. They still crash after overdoing things and spent seven weeks in bed in 2024; they now walk about 1.5 km most days.
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What they tried
Also tried
Their words about each treatment
- stretching / light yoga · Helped
Without this stretching I become less mobile and the pain increases
In context ↗ - walking (regular gentle walks) · Helped
If this stops I actually feel worse
In context ↗ - pacing / limits and rest days · Helped
only when I got it under control did I start to see real progress
In context ↗ - Garmin 45 watch · Helped
its brilliant, reminds me to walk a wee bit more, when I've reached my limit, when to stop etc
In context ↗ - pain killers · Not said
my consumption of pain killers is closed to zero
In context ↗ - medical marijuana · Helped
Gone are th wired but tired nights and my consumption of pain killers is closed to zero
In context ↗ - sleeping as much as possible · Worse
I tried it, doesn't work and you end up worse
In context ↗
Approaches: Mind-body practices · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2009 | fell ill and became bedboundWhen I first took sick, 14 years ago, I was bed boundIn context ↗ | Severe |
| 2010 | moved from bed to the sofa, then downstairs and outsidestarted off bed bound, then made it downstairs, then made it outsideIn context ↗ | Severe |
| 2021-09-19 | working four days a week and taking short regular walksi can work a 4 day week and can get limited regular walks completedIn context ↗ | Mild |
| 2023-06-03 | went from walking with a stick to riding an e-bike to workIn the last year I've went from walking on a stick to riding an ebike to workIn context ↗ | Mild |
| 2023-09-17 | at his best: working four days, short walks, out a few timesFor me now it feels as if I am at my best, I can work 4 days, can go for small walksIn context ↗ | Mild |
| 2024 | in bed for seven weekslast year I was in bed for 7 weeksIn context ↗ | Severe |
| 2025-11-21 | walking 1.5 km five days a week, working four days, sleeping close to a full night on medical marijuanaMedical Marijuana helps me, it's not perfect but I get close to a full night's sleep the majority of nights nowIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I have learned on one day i can increase my walk, but then several days later i crash
In context ↗ - Sleep problems
the fidgeting that normally keeps me awake at night
In context ↗ - Pain & fibromyalgia
a sativa for daytime which dulls the pain allowing me to function
In context ↗ - Muscle weakness
One day after being sick I tried to move the sideboard with my wife, and literally couldn't budge it
In context ↗ - Anxiety & low mood
mentally a mess and worried i may not recover
In context ↗
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