From Wheelchair to Walking for Two Hours | Jools’ ME/CFS & POTS Recovery
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving
- 7 months
- Published
- No date given
In their words
- Condition: ME/CFS
a patient with ME/CFS, POTS, mass cell activation syndrome, and more
Watch the video ↗From the video’s captions - At worst: Severe
I could shower myself maybe once every once a week, once two weeks when I was at my worst.
Watch the video ↗From the video’s captions - Now: Near normal
I do still have sensations and I do still have my jangly days.
Watch the video ↗From the video’s captions - Began after: another virus
it might be triggered by a virus
Summary
Jules Walters was largely housebound for months after her illness began in August, showering only every week or two at her worst. After a self-hypnosis program made her worse, she credits Rebecca Tolin's Be Your Own Medicine course, with daily somatic tracking, for a shift in her fatigue over about seven weeks. She now does what she wants, including two-hour walks, with occasional palpitations and some sensations left.
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What they tried
What they credit
Also tried
Their words about each treatment
- POTS medications (not named) · Helped
they were really helpful with the POTS meds
Watch the video ↗From the video’s captions - brain retraining program using self-hypnosis · Worse
it was a brain retraining program using self-hypnosis.
Watch the video ↗From the video’s captions - Be Your Own Medicine Live cohort · Helped a lot
you did take the Be Your Own Medicine Live cohort
Watch the video ↗From the video’s captions - somatic tracking · Helped
the next one is a sematic tracking
Watch the video ↗From the video’s captions - heart-rate tracking app (stopped) · Not said
one of the key thing things for my recovery has been to uh let go of the apps that were measuring my heart rate
Watch the video ↗From the video’s captions - fexofenadine (allergy tablet) · Not said
I take um fexophenadine, an allergy tablet
Watch the video ↗From the video’s captions - releasing-tension body scan and other meditations · Helped
So the ones that I found most helpful um so releasing tension I've always liked body scans
Watch the video ↗From the video’s captions
Approaches: Brain retraining · Mind-body practices · 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. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| mid-August last year | Sudden nausea at a festival show, then fatigue so strong she could barely type; push-crash cycles over six weeksI became unwell. It was mid August last year.Watch the video ↗From the video’s captions | Moderate | |
| a couple of months later | Mostly in bed or a chair by the bed; could not make food or wash her hair; diagnosed with ME and POTS by ChristmasBy a couple of months later I was spending a lot of time in bed and I was waking up with these horrible headaches, horrible fatigue, burning sensations everywhere.Watch the video ↗From the video’s captions | Severe | |
| Christmas | A small bounce over Christmas; short trips out by car and wheelchairSo I got a bit of a bounce over Christmas.Watch the video ↗From the video’s captions | Severe | |
| after Christmas | Crashed after two or three days out in the wheelchair; in bed for about 10 daysIt was two or three days in a row in the wheelchair and then I had a bit of a crash and then I was in bed for 10 days or somethingWatch the video ↗From the video’s captions | Severe | |
| early this year | Felt worse while pushing hard with a self-hypnosis brain retraining programI had an uplift the first week but then I think I was trying so hard I noticed that actually I was feeling worse during the exercisesWatch the video ↗From the video’s captions | Severe | |
| during the 10-week course | Felt safe, moved downstairs for meals, travelled to see her mother, began washing up and short walkslittle by little um I once I started feeling safe and I felt something had shifted. I felt I wasn't in permanent fight flight anymore.Watch the video ↗From the video’s captions | Moderate | Rebecca Tolin / Be Your Own Medicine |
| three weeks after the course | Energy back, walking two hours and driving, off POTS meds; still some sensations and jangly daysSo right now I'm feeling amazingly wellWatch the video ↗From the video’s captions | Near normal | Rebecca Tolin / Be Your Own Medicine |
Adverse events
- Brain retraining programs (DNRS, Gupta, ANS Rewire, Primal Trust)“I was feeling worse during the exercises” Watch the video ↗From the video’s captions Made symptoms worse
- “then putting a load of washing in and then wham” Watch the video ↗From the video’s captions Made symptoms worse
- “then I had a bit of a crash” Watch the video ↗From the video’s captions Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
then I had a bit of a crash and then I was in bed for 10 days
Watch the video ↗From the video’s captions - POTS & dysautonomia
I don't get dizziness.
Watch the video ↗From the video’s captions - Mast cell (MCAS) & allergies
I get hay fever and stuff.
Watch the video ↗From the video’s captions - Pain & fibromyalgia
I have had a lot of pelvic pain
Watch the video ↗From the video’s captions - Headaches & migraine
I was waking up with these horrible headaches
Watch the video ↗From the video’s captions - Gut problems
I suddenly started feeling nauseious.
Watch the video ↗From the video’s captions - Muscle weakness
I could barely lift my fingers on the keyboard
Watch the video ↗From the video’s captions - Neuropathy & tingling
burning sensations everywhere
Watch the video ↗From the video’s captions - Heart symptoms & palpitations
I occasionally get palpitations
Watch the video ↗From the video’s captions - Anxiety & low mood
I'm not saying I don't have anxiety
Watch the video ↗From the video’s captions
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