ME/CFS
Severe → no benefit
ME/CFS, worked from bed and rested every half hour; still lies down hourly, tried scooter
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Sep 2024
In their words
- Condition: ME/CFS
Basically, I can delay / discourage my PEM with resting, and that's what I see in my schedule.
In context ↗ - At worst: Severe
i use work-from-bed to remind me that i am not well ... I have a scooter and I use it whenever I want to go out but I'm too tired
- Now: No benefit
I have a timer that goes off every hour and I ghost for 15 minutes and lie down in a dark room.
In context ↗
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
A Reddit user with ME/CFS who worked from bed and lay down every half hour, describing PEM based on exertion that they can delay or discourage with rest. Getting a scooter let them go out and walk with their spouse again and massively improved their mental health; a cane helped with mobility and balance and signaled to others that they needed to sit. In September 2024 they still set a timer to lie down in a dark room for 15 minutes every hour when they had a visitor.
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What they tried
Also tried
pacing / lying down regularly· Helpedheated mattress cover with a timer· Helpedmobility scooter· Helpedcane· Helpedsymptom tracking· Not said
Their words about each treatment
- pacing / lying down regularly · Helped
I can delay / discourage my PEM with resting
In context ↗ - heated mattress cover with a timer · Helped
heated mattress cover with a timer is great because then you can set it for 30 min and just get over the hump
In context ↗ - mobility scooter · Helped
I have a scooter and I use it whenever I want to go out but I'm too tired, and it has massively improved my mental health
In context ↗ - cane · Helped
I also use a cane, which is helpful on two levels
In context ↗ - symptom tracking · Not said
I do really intense symptom tracking, and mine is usually based on exertion
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| 2023-03-10 | working from bed and lying down every half houri use work-from-bed to remind me that i am not well, and although i'm doing a little bit, it truly has to be a little bit and then lying downIn context ↗ |
| 2023-03-18 | started using a scooter and a cane; going out and walking with spouse againI have a scooter and I use it whenever I want to go out but I'm too tired, and it has massively improved my mental health because going outside is greatIn context ↗ |
| 2024-09-08 | still pacing with a timer; lies down 15 minutes every hour in a dark roomI have a timer that goes off every hour and I ghost for 15 minutes and lie down in a dark roomIn context ↗ |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I can delay / discourage my PEM with resting
In context ↗ - Temperature regulation
heated mattress cover with a timer is great because then you can set it for 30 min and just get over the hump of "i'm too chilly"
In context ↗