Lydia's ME/CFS Recovery Story - Practical Tips for Recovery
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving
- 2 years
- Published
- No date given
In their words
- Condition: ME/CFS
I was diagnosed with chronic fatigue syndrome when i was 39
Watch the video ↗From the video’s captions - At worst: Mild
I was working I was struggling to work so I reduced my hours
Watch the video ↗From the video’s captions - Now: Near normal
chronic fatigue is a bit of an old narrative now it's not it's not as present as it was before
Watch the video ↗From the video’s captions - Began after: glandular fever or EBV
how come I caught Angela fever or mono as you call it in the states
Summary
Lydia was diagnosed with chronic fatigue syndrome at 39 and spent about two years booming, busting and crashing while working reduced hours. Counselling helped her let go of shame, and learning pacing with a timer cut down the crashes that followed exertion. Her recovery came gradually over about six years, and she now says chronic fatigue is an old narrative, though it is not as present as before.
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What they tried
What they credit
Also tried
Their words about each treatment
- Memorising phone book numbers (consultant's advice) · No change
the phone book certainly didn't help
Watch the video ↗From the video’s captions - Counselling (free charity counselling) · Helped
counseling was was great just to understand the feelings
Watch the video ↗From the video’s captions - Pacing with a 10-minute timer (chunking activities and taking breaks) · Helped a lot
I don't have that big Crush afterwards
Watch the video ↗From the video’s captions - Healthy sleep routine and cutting daytime naps · Helped
get into a healthy sleep routine
Watch the video ↗From the video’s captions
Approaches: CBT & mindset · 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. 1 step has no time and sits in story order between the steps around it. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| age 39 | Diagnosed with chronic fatigue syndrome after glandular fever; cut her work hours while raising four childrenI was diagnosed with chronic fatigue syndrome when i was 39Watch the video ↗From the video’s captions | Mild | |
| first two years | Constant fatigue with boom-and-bust crashes; often too drained to go outafter about two years of really booming and busting and crashingWatch the video ↗From the video’s captions | Mild | |
| about two years in | Free counselling helped her let go of shame and talk openly about her illnessI ended up going for some counselingWatch the video ↗From the video’s captions | Mild | CBT and psychotherapy |
| — | Paced with a 10-minute timer, breaking tasks into small steps; crashes stoppedif I chunk my activities into small steps and I do a little have a break and do a little and have a break I don't have that big Crush afterwardsWatch the video ↗From the video’s captions | Mild | Pacing and the energy envelope |
| about six years after diagnosis | Fatigue much less present; more energy, no constant headachechronic fatigue is a bit of an old narrative now it's not it's not as present as it was beforeWatch the video ↗From the video’s captions | Near normal |
Adverse events
- “we all know that just causes a crash and ends up you know feeling worse afterwards” Watch the video ↗From the video’s captions Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I don't have that big Crush afterwards
Watch the video ↗From the video’s captions - Brain fog
I think I'm muddled on for about two years like that
Watch the video ↗From the video’s captions - Headaches & migraine
instead of a constant headache
Watch the video ↗From the video’s captions - Flu-like symptoms
the cycles of every winter getting ill and swollen plants
Watch the video ↗From the video’s captions
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