ME/CFS
Outcome unclearIll for 6 years
Mild ME/CFS then POTS, mobility aids, setbacks and more crashes
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 6 years
- Last post
- Oct 2024
In their words
- Condition: ME/CFS
I go to uni with undiagnosed mild MECFS
In context ↗ - At worst: Severe
at worst can leave the house like once a week to roll down the hill in my wheelchair ... I can't walk around for like 20 mins with a cane without my body freaking out
In context ↗
Summary
Lake 38147 was mildly ill with ME/CFS from about 2018, sleeping 14 hours a day but managing university and a normal life. Three years in they deteriorated, likely developed POTS and used a cane, rollator and wheelchair, leaving the house about once a week. A move to a more accessible area let them go out every other day, but a Tesco walk and a GP trip set them back, and by October 2024 their POTS was flaring and they had crashed more.
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What they tried
Also tried
custom rigid wheelchair· Helpedwalking cane and rollator· Helpedmoving to a more accessible area· Helped
Their words about each treatment
- custom rigid wheelchair · Helped
my wheelchair relieves all my symptoms
In context ↗ - walking cane and rollator · Helped
mostly use a walking cane and rollator because they help but can manage without them in pain
In context ↗ - moving to a more accessible area · Helped
We move a year later to a more accessible area where I don't have to wheelie 24/7 to get down the street. I end up figuring out that I can go out every other day for like 4 hours max.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were | After |
|---|---|---|---|
| 2018 | ME/CFS begins at the end of sixth form; sleeping 14 hours a day but managing universityI go to uni with undiagnosed mild MECFS, If I do something like travel I end up sleeping a lot afterwards but all in all basically live a "normal" life.In context ↗ | Mild | |
| about 3 years in | deterioration after starting a cleaning job; developed POTS, began using cane, rollator and wheelchairI move, keep deteriorating, mostly use a walking cane and rollator because they helpIn context ↗ | Moderate | |
| 2023 | lowest point then: out of the house about once a week, in a wheelchair, unable to walk 20 minutes with a caneat worst can leave the house like once a week to roll down the hill in my wheelchairIn context ↗ | Severe | |
| 2024 | moved to a more accessible area; able to go out every other day for up to four hoursI end up figuring out that I can go out every other day for like 4 hours max.In context ↗ | Moderate | Relocation and environmental change |
| September 2024 | crashed after walking round Tesco with a cane instead of using the wheelchair and cooking for friendsI decided to walk around Tesco like a month ago with a cane and then made my friends chicken nuggets (terrible choice).In context ↗ | Severe | |
| October 2024 | almost fully bedbound for a month; crashed further after a sitting showerI felt well enough to have a sitting down shower, that was yesterday, I've crashed more :(In context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Sleep problems
asking people how to not sleep for 14 hours a day?
In context ↗ - Post-exertional malaise
If I do something like travel I end up sleeping a lot afterwards
In context ↗ - POTS & dysautonomia
my pots is currently really flaring up and I can't sit without having bad abdominal pain afterwards
In context ↗ - Pain & fibromyalgia
leaning back in my rigid one against a wall or something is the only thing that really helps with the pain
In context ↗ - Gut problems
I can't sit without having bad abdominal pain afterwards (like on the loo)
In context ↗