Why call myself the ME/CFS self-help guru (part one)

Ok, so the name is a bit presumptuous and I have to admit that it is slightly tongue in cheek. After all, I’ve done nothing yet to earn the respect of any followers. But that is what blogging is about isn’t it? Inspiring interest and earning the respect of followers? And when I take something on I aim to do it well. I really believe that I have a lot to share that could really help.  I’ve learned a lot from my experiences and I’ve read a lot too. My spiritual development has also been closely linked to the learnings that have brought me health. I believe in myself enough to give myself a name worth living up to! 
More importantly I think there is a real need for a focus on self-help if you have this condition.  ME/CFS is an illness that the medical profession has not yet fully come to terms with. There is so much difference of opinion, that we are still a long way off any diagnostic test and any kind of comprehensive treatment, let alone a cure. I do however believe that there is a load of stuff we can do to help ourselves. It is possible to manage this illness and live happy fulfilling lives. I also believe that appropriate self-help can lead to complete recovery for some and the earlier that this is started in the course of the illness the better the chance. I don’t think there is enough clear advice about management and self-help, so I want to fill that gap. (I’m also writing a book about it by the way!)
So what’s my story? I first got ill at the ripe young age of 29 (although a year earlier I had taken a month to recover fully from a virus and had been diagnosed with a post viral fatigue so maybe that was the start?). Before it happened I thought I was at the peak of my health. I loved my job as a residential social worker, working with children with emotional and behavioural difficulties. I also loved my voluntary work at a youth counselling agency. I felt as though I was extremely fit, I did yoga every day and in addition, heavily exercised about 5 times a week (swimming a mile, running three, or doing aerobics). I also had a great social life but I didn’t sleep much!
After 6 months off work resting, I was no longer completely debilitated.  I’d started a T’ai chi class and was seeing an acupuncturist with slow but positive results. An understanding occupational health department started me back to work a few hours at a time.  Six months later I was working half time but I knew that even though I was doing a lot better, it wasn’t good for me to work when I was having a bad day. As my shifts were now part of a rota system I still had to go to work when I was having a bad day. By then I had accepted that I had a chronic illness and resolved not to put my life on hold. I just needed to learn how to live it in a different way. So I decided to leave work and go travelling again and I headed off around South America.  So what!  If I couldn’t walk the Inca trail, I could still visit Machu Picchu! So what! If I couldn’t carry my backpack far, I could get a taxi from the bus station to the hostel! The best thing about travelling was that I was wonderfully free to respond to how I was feeling on each day and take it easy on my bad days. I had a wonderful time and little by little got better and better.
By the time I returned to England I had improved enough to live a relatively normal life, all be it a sedentary one. I was still unable to increase my physical activity. I then decided to take an advanced diploma in person centred counselling. Something I’d always been interested in since finishing my degree in psychology and starting my voluntary work. The only reason that I hadn’t pursued it before now was my desire for an active life. I just couldn’t have imagined having a job that involved sitting still all day! Now it fit much better with the way ME /CFS dictated I live my life.
Whilst studying part time I worked as a children’s worker in a woman’s refuge and I counselled in a young offenders institute on placement. I continued practising a way of being that I’d been learning through my interest in Taoist philosophy, involving accepting my daily limitations and minimising both mental and physical exertion.  My health continued improving.
5 years after first coming down with ME/CFS, I went on a trip to the Lake District with friends.  Looking down from the peak of Helvellyn I felt like a blind woman who had regained her sight. I knew I was well again, I had beaten this illness.
I’ve just realised that this is turning into a bit of an epic. And I know from experience that it can be hard to concentrate for very long if you have this condition, so I’m going to stop here. This is only half of my story so I will split it into two parts. This time next week I’ll continue.
 

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