Recovery from ME/CFS

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
- Meditation
- 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:
- Pacing

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.


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Related Websites
http://www.afme.org.uk
Action for ME, a UK charity for CFS, ME sufferers
http://www.cfspages.com
http://www.chronicfatiguesyndrome.me.uk
This site includes a forum and live chat, as well as articles, advice and stories from CFS sufferers.
http://www.fightingfatigue.org
Blogs, articles and lists of web resources for CFS and Fibromyalgia
http://www.healingwell.com/pages/
HealingWell.com Resource Directory
http://www.me-cfs-recovery.co.uk
Information about CFS and treatment at me-cfs-recovery.co.uk and me-cfs-treatment.com


Comments
By tiredchris, 03-May-2010 10:24
I've had ME for 23 and a half years, now............. I only discovered I had it by reading about it on the web. My G.P. says he made an appointment with a neurologist for me, about 3 weeks ago ? What else can I do to help myself ? Thanks. I live alone, in Hull.
By South London, 09-Nov-2010 05:22
"I've always suspected my inner drive and determination has been linked with my condition, so that's something I need to explore." - This would correlate with the fact ME was dubbed 'Yuppie Flu' in the 80's due to the disproportionate number of city workers who contracted the disease. I agree wholeheartedly with the Reverse Therapy approach. I've been suffering for close to two years now and made great improvements using this method. I'm not back to 100% though. Yet. TiredChris - if you're reading, I'd recommend you start to have a read of John Eaton's blog, just google 'Reverse Thinking'. Many incredibly useful articles regarding CFS/ME and dealing with the surrounding issues and root causes. Basically this condition is a neurological disorder brought about by natural emotions that the body creates being ignored and over-ruled by the head. This forces the body to create a distress signal that manifests itself as CFS symptoms. If that sounds a bit airy-fairy regarding emotion, you've got to remember that emotions aren't just 'feelings'- they are actual chemicals that the body and brain produce which then travel to every cell in the body.
By Ian, 10-Nov-2010 22:40
South London - If you would like to discuss the 'drive and determination' aspects with me, please contact this website for details.
By Julie, 05-Aug-2011 10:11
Just great to realise that there are people who remain really positive with this horrible illness. I want to try and live positively with this rather than moan about it all the time. Many thanks.
By It is GREAT to talk to somebody about FM! I was wn, 15-Oct-2012 16:45
It is GREAT to talk to somebody about FM! I was wndierong if anyone had any info on a form that is more prone to work on the internal organs more-so than the external pain(which I also have)? I have chronic BAD ulcers that don't go away and I am on a strong regimen of medication for them that keeps them under control. Lately I have been experiencing several episodes of nausea a week. Not the real weakening sickly, pass-out type, but instant, no warning,projected vomitting. Quite embarrassing when I'm running a cash register and have to say excuse me and run in the middle of an order!! Anything that you take for nausea makes you sleepy and that won't work either! I want to try some Librax. It works on stomach spasms. I would like to let anyone who reads this know that I am praying for them. Thanks for being there and please know that I am here also for whatever help I might be, Bea Rockwell (phillipsbeatrice@hotmail.com)
By Sarah Dean, 23-Jul-2013 12:08
I especially liked the bit about the key issues at the root of the illness that Ian wrote about and I have made a list of my own. It is a terrible illness to go through but people do get better. I am on my own recovery journey. There is a brilliant book called "recovery from cfs, 50 personal stories" by Alex Barton which is very inspiring and helpful.
By It is GREAT to talk to somebody about FM! I was wd, 17-Oct-2015 14:02
It is GREAT to talk to somebody about FM! I was wdneoring if anyone had any info on a form that is more prone to work on the internal organs more-so than the external pain(which I also have)? I have chronic BAD ulcers that don't go away and I am on a strong regimen of medication for them that keeps them under control. Lately I have been experiencing several episodes of nausea a week. Not the real weakening sickly, pass-out type, but instant, no warning,projected vomitting. Quite embarrassing when I'm running a cash register and have to say excuse me and run in the middle of an order!! Anything that you take for nausea makes you sleepy and that won't work either! I want to try some Librax. It works on stomach spasms. I would like to let anyone who reads this know that I am praying for them. Thanks for being there and please know that I am here also for whatever help I might be, Bea Rockwell (phillipsbeatrice@hotmail.com)
By I wondered the same thing Madeleine. Wanted to kno, 23-Dec-2015 12:58
I wondered the same thing Madeleine. Wanted to know if I had soomhew failed the challenge of registering, lol. Glad you asked what I was wondering. Kind of exciting, this new vehicle. I remember when Phoenix Rising was just bare bones. Before that, the yahoo group. I can see daylight from here. No pressure, Cort.
By Phil, 26-Dec-2015 09:48
I have found Chinese exercises like Qi Gong helpful, especially Standing like a Tree or Zhan Zhuang
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This recovery story is in categories: Chronic Fatigue Syndrome, ME (myalgic encephalitis), Post viral fatigue syndrome