Key STEPS That Brought Susanna Back (From Severe ME/CFS & Long Covid)
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving
- 5.5 years
- Published
- No date given
In their words
- Condition: ME/CFS
I didn't get a a proper diagnosis of chronic fatigue syndrome
Watch the video ↗From the video’s captions - At worst: Severe
by the end of the 3 weeks I was bedridden
Watch the video ↗From the video’s captions - Now: Near normal
my body is reacting to nearly everything um pretty pretty normally
Watch the video ↗From the video’s captions - Began after: stress or burnout
but it was just a combination of me being incredibly driven and not listening to my body over and over and over again
Summary
Susanna Johnson became ill at about 20 and was bedbound for stretches. She credits internal family systems therapy, tapping with gentle exercise, zone 2 running, radical rest, pacing and a diet without gluten, dairy, sugar or caffeine. She now works part-time and runs but is not fully recovered; two COVID infections two years ago relapsed her.
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What they tried
What they credit
Also tried
Their words about each treatment
- low dose nitroxin (hormone medication) · Much worse
for 3 weeks I was on it by the end of the 3 weeks I was bedridden
Watch the video ↗From the video’s captions - naturopath's herbal solution · Helped
it actually just leveled it out completely and I haven't had an issue since
Watch the video ↗From the video’s captions - gluten and dairy avoidance, cutting sugar and caffeine · Helped
staying away from gluten and dairy because I I well I found gluten quite hard to digest
Watch the video ↗From the video’s captions - FODMAP diets · No change
I went on crazy kind of fod map diets
Watch the video ↗From the video’s captions - Alex Howard's program · Helped
I did that program about two and a half years ago
Watch the video ↗From the video’s captions - pacing taught in Alex Howard's program · Helped
it gave me um really good tools to um just yeah approach pacing well
Watch the video ↗From the video’s captions - internal family systems therapy · Helped a lot
for me addressing that was through therapy mainly
Watch the video ↗From the video’s captions - EFT tapping combined with exercise · Helped
I used EFT emotional Freedom technique or tapping as it's called to combine that with exercise
Watch the video ↗From the video’s captions - rest in bed after surrender · Helped
okay I am going to do absolutely nothing if I don't feel capable
Watch the video ↗From the video’s captions - gentle movement, Pilates and zone 2 heart-rate running · Helped a lot
if I was to pinpoint two things nervous system regulation and um movement and and exercise
Watch the video ↗From the video’s captions - thyroid medication from her doctor · Worse
the doctor put me on a medication and because it was again so marginal um it pushed me the opposite direction and I got symptoms
Watch the video ↗From the video’s captions
Approaches: CBT & mindset · Alternative therapies · Diet · Exercise and activity · Other drugs and medicines · Pacing · Radical rest · Trauma & somatic work
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. 3 steps have no time and sit in story order between the steps around them. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| end of first year of university, about eight years ago | lacking energy when running, dizziness and nauseathat was one of the the starting signs then kind of just different things like dizziness um nausea that kind of thingWatch the video ↗From the video’s captions | Mild | |
| end of that summer | bedridden after three weeks on a low-dose hormone medicationfor 3 weeks I was on it by the end of the 3 weeks I was bedriddenWatch the video ↗From the video’s captions | Severe | |
| — | out of bed, kept studying with great difficulty, took a year outI kept going to University for actually for another two years but to be honest that was pretty much all I could doWatch the video ↗From the video’s captions | Mild | |
| two years ago | relapsed after COVID twice in five weeks; moved home, weeks in bedI actually got Co twice in the space of five weeks and that just relapsed meWatch the video ↗From the video’s captions | Severe | |
| — | energy slowly returned after weeks of complete rest; started Alex Howard's programeventually little bits come back and I brought in small small little bits of movement like really really gentlyWatch the video ↗From the video’s captions | Moderate | Radical rest |
| — | back to part-time work after IFS therapy, EFT and gentle exercisefor me addressing that was through therapy mainlyWatch the video ↗From the video’s captions | Mild | CBT and psychotherapy |
| now, age 28 | running and training for a triathlon; still reconditioning and pacingI'm back running I'm um training for a triathlonWatch the video ↗From the video’s captions | Near normal | Everyday exercise and activity |
Adverse events
- “for 3 weeks I was on it by the end of the 3 weeks I was bedridden” Watch the video ↗From the video’s captions Made symptoms worse
- “it pushed me the opposite direction and I got symptoms” Watch the video ↗From the video’s captions Made symptoms worse
- “I would do even 10 seconds of running would would put me in bed for two weeks” Watch the video ↗From the video’s captions Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I would do even 10 seconds of running would would put me in bed for two weeks
Watch the video ↗From the video’s captions - POTS & dysautonomia
like dizziness um nausea that kind of thing
Watch the video ↗From the video’s captions - Gut problems
I was always bloated no matter what I ate
Watch the video ↗From the video’s captions - Muscle weakness
my body felt like lead
Watch the video ↗From the video’s captions - Anxiety & low mood
I think I panicked a bit um there lots of people very was very overstimulated
Watch the video ↗From the video’s captions
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