Recovery from ME/CFS
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Looking back I had an episode as far back as 10 years ago (off work for a couple of weeks), and then another about 7 years ago (off work for a month and took another 9 months to get back to about 80% of my normal self). I remember the doctor saying it wasn't ME but PVFS. But always felt from then on that something wasn't quite right with me but just couldn't understand what it was!
Then nearly 5 years ago I went down with it again really badly, told the doctor this time we were going to get to the bottom of it. - and a couple of months later was diagnosed with ME. Those were the real dark days - and felt very lonely and isolated. But I was always determined I was going to get better - I just knew I would even though didn't know how. My biggest fear was I would never get my brain back to 100% again - a real concern as I work in IT and depend on it! Lack of energy meant I wasn't able to travel far, so can put my recovery down to:
Working a lot of things out for myself ("self-counselling" is a term one of my mates used), based on what I found on the internet and, importantly, instinctively felt appropriate to me:
- Prioritise activity, accept only top priorities get done
- Reverse therapy - identifying the root cause stresses and frustrations and creating a 'message' for myself
- A technique for letting go emotions
- Emotions checklist (when unsure of my feelings)
- Took responsibility for my own recovery
Some practical guidance from a few people in the local ME Support group, especially:
Some good advice from GPs at my local practice:
- Stop pushing, back off, accept when my body wants me to stop
- Very, very gradual build up of working hours - much, much slower than I expected
Some good advice from a Consultant:
- How to use Amitriptyline before bedtime
- Gradual physical exercise to build up stamina
The key things I found at the root of my condition were:
- I always have a calm and measured response even under extreme pressures (relationships, family, work)
- A cycle of behaviour I'd adopted towards my wife to handle personality clashes
- Recognised I had never shared my marital difficulties and feelings with anyone else
These were all addressed as part of my recovery. The key life change was that my wife and I decided to go our separate ways after being together for 28 years and I moved 'back home' to London.
I was off work for 7 months and made a gradual return working mainly from home over a further 4 months. Over time I found that with less effort and greater prioritising I was more productive and effective at work than ever before. I had another smaller episode 2 years ago (one month off work) - but figured out the underlying reasons (some stress from doing too much again) and thought I was back in control.
Last summer I felt better than I ever had in the past 10 years! Then had a continual 'cold' since November - eventually diagnosed in February as a chest infection which finally cleared up 3 weeks later - great I thought, I'll be back to normal again in a couple of days - and a few days later I was into 'boom and bust", brain fog, sore throat, disrupted sleep, tinnitus, dizzy etc .... that was when I realised I've been here before!
Whilst this episode appears to have been triggered by illness - I'm beginning to realise it's probably associated with my drive and determination - which I probably 'switched on' too early in my eagerness to get back into the swing of things after being ill and not giving myself sufficient time to recover properly. I've always suspected my inner drive and determination has been linked with my condition, so that's something I need to explore.
Overall, I've always recognised the need for a set of tools to cope with and recover from a condition that has both physical and mental characteristics, and the importance of identifying and addressing the root causes, which will mean being very honest with yourself.
This recovery story is in categories: Chronic Fatigue Syndrome, ME (myalgic encephalitis), Post viral fatigue syndrome