Housebound with ME/CFS, now much better after pacing and stopping work
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Jun 2026
In their words
- Condition: ME/CFS
I've had CFS for four years now
In context ↗ - At worst: Severe
I’m not housebound which is lucky for me, though I was at one point. ... Two years ago, I couldn’t even walk for ten minutes.
In context ↗ - Now: Much better
Over the past year, I have been listening to my body, resting when I need to and doing activity when I can, and I'm much much better for it.
In context ↗ - Began after: glandular fever or EBV
I used to work as a lawyer, full-time, when I got glandular fever. It then turned into CFS.
In context ↗
Read from 27 of their posts and comments; links to the 19 this page draws on
Summary
Australian lawyer who developed CFS after glandular fever around 2014. At their worst they were housebound and could not walk ten minutes; a graded exercise plan made them worse, and increasing work hours too quickly to 28 a week proved too much. After stopping work and pacing they were much better by 2018, walking almost daily and at the gym twice a week, though crashes, palpitations, headaches and sore throats persisted.
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What they tried
What they credit
Also tried
Their words about each treatment
- graded exercise program · Worse
I was also put on a graded exercise plan which made me worse.
In context ↗ - walking and gym exercise · Not said
I exercise fairly regularly - I walk almost every day and go to the gym around twice a week.
In context ↗ - rest and pacing · Helped a lot
Over the past year, I have been listening to my body, resting when I need to and doing activity when I can, and I'm much much better for it.
In context ↗ - stopping work / leave from work · Helped a lot
Now I'm on leave from work and I'm the healthiest I've been since getting glandular fever more than four years ago.
In context ↗ - shower stool · Helped a lot
A shower stool made the world of difference for me when I was at my worst!
In context ↗ - massage · Helped
I’ve found massage to be really helpful!
In context ↗ - cutting back on caffeine and sugar · Helped
What helped me with insomnia was really cutting back on caffeine and sugar
In context ↗ - big carb and protein breakfasts and snacks · Helped
I started having quite big breakfasts loaded with carbs and protein, and I will generally have a snack as well as lunch and dinner.
In context ↗ - moving to a one-storey place · Helped
When I moved recently, I made sure to move to a one-storey place and it's made such a difference.
In context ↗ - moving to Sydney · Helped
I've since moved home to Sydney and have felt much better in a more temperate climate
In context ↗ - Acetyl L Carnitine · No change
a dietician put me on Acetyl L Carnitine and it didn’t make a difference to me.
In context ↗ - anti depressants · Helped
it look a LOT of self reflection and anti depressants
In context ↗ - citrine ring and healing chant · No change
my mother bought me a citrine ring that she said had healing powers. I had to say a chant and then wear it. Needless to say, I still have CFS.
In context ↗ - paracetamol · Helped
A combination of paracetamol and caffeine sometimes helps too
In context ↗ - heat (blankets, hot water bottles) · Helped
Things that help me include heat (blankets, hot water bottles, etc)
In context ↗ - stretching · Helped
Things that help me include heat (blankets, hot water bottles, etc), massages (whether from electronic massage cushions, hand-held roll-y massage thingies or a professional massage therapist) and stretching.
In context ↗ - spray bottle of water · Helped
A spray bottle of water used on the limbs regularly is a lifesaver if aircon isn’t an option!
In context ↗ - avoiding fried and other foods that disagree · Helped
I also stay away from foods that disagree with me, like fried foods, as they tend to make my pulse race etc.
In context ↗ - CBT and psychotherapy · Worse
I'm also skeptical as GET/CBT made me worse.
In context ↗
Approaches: Mould avoidance · Other drugs and medicines · Pacing · Radical rest
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2014 | Glandular fever while working full-time as a lawyer, which turned into CFSI used to work as a lawyer, full-time, when I got glandular fever. It then turned into CFS.In context ↗ | Mild | |
| 2016 | Housebound at one point and unable to walk for ten minutesTwo years ago, I couldn’t even walk for ten minutes.In context ↗ | Severe | |
| 2017 | Big crash after a graded exercise plan and work hours rising to about 28 a weekI had a big crash and had to start again from zeroIn context ↗ | Moderate | |
| 2018 | Much better after listening to their body, resting and pacing, and leaving workOver the past year, I have been listening to my body, resting when I need to and doing activity when I can, and I'm much much better for it.In context ↗ | Mild | Pacing and the energy envelope |
| 2019-01-28 | Off work, walking daily and at the gym twice a week, still crashing when they overdo itI walk almost every day and go to the gym around twice a week.In context ↗ | Mild |
Adverse events
- Graded exercise therapy (GET)“I was also put on a graded exercise plan which made me worse.” In context ↗ Made symptoms worse
- Graded exercise therapy (GET)“I had a big crash and had to start again from zero. I was put on a graded exercise program ... which proved to be too much” In context ↗ Made symptoms worse
- CBT and psychotherapy“I'm also skeptical as GET/CBT made me worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
If I push too hard I’ll crash later that day or the next day.
In context ↗ - Sleep problems
I used to sleep so badly and now I wake up feeling much more refreshed.
In context ↗ - Flu-like symptoms
So constant pain and swollen glands is fine, then?
In context ↗ - Headaches & migraine
It kind of feels like a tight headband, especially around my forehead.
In context ↗ - Heart symptoms & palpitations
Yes, I get palpitations too, and only when I'm anxious.
In context ↗ - Temperature regulation
I’ve noticed over the past couple of years I have started to really struggle in the heat
In context ↗ - Muscle weakness
Yes, I’ve felt like this a lot.
In context ↗ - Anxiety & low mood
I definitely do have times when I feel really upset and I end up crying about this illness.
In context ↗
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