ME/CFS
Severe → somewhat betterIll 11 years before improving or writing
Bedbound with ME/CFS, now manageably moderate and no longer housebound
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 11 years
- Last post
- Nov 2024
In their words
- Condition: ME/CFS
I am autistic and oc have ME. Have had it for over a decade.
In context ↗ - At worst: Severe
Was largely bedbound and almost entirely housebound.
In context ↗ - Now: Somewhat better
in recent years have gone from ‘almost severe’ to ‘manageably moderate’
In context ↗
Read from 6 of their posts and comments; links to the 4 this page draws on
Summary
Hare 57593 has had ME/CFS for over a decade. About six years before writing, they were largely bedbound and almost entirely housebound, lost their job and their marriage ended. After the divorce and moving in with parents, health stabilised; they later described themselves as 'manageably moderate' — no longer housebound but still stuck inside most of the time, using a moped for groceries. They married in late 2023.
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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 |
|---|---|---|
| over a decade before May 2024 | ME/CFS beganI am autistic and oc have ME. Have had it for over a decade.In context ↗ | Not stated |
| about 6 years before May 2024 | crumbled: lost job, bedbound and housebound, marriage endingWas largely bedbound and almost entirely housebound. Lost my job, because I just couldn’t do the workIn context ↗ | Severe |
| over the past couple years before May 2024 | health stabilised after divorce and moving in with parentsHealth stabilized. No longer bedbound, but it’s still hard to go out too much.In context ↗ | Moderate |
| 2024-11-28 | no longer housebound, uses a moped for grocery tripsSince I'm no longer housebound, I got a moped for groceries trips, and. It helps.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Muscle weakness
My neurologist pointed out my atrophy. I am healthier these days than then, so no longer atrophying.
In context ↗