I first got ill about 18 years ago at the age of 29. Although perhaps it really started a year earlier when I took over a month to get over a virus and was diagnosed with a post viral fatigue. At the time I thought I was at the peak of my health. I had an active and demanding job as a Residential Social Worker and I volunteered at a youth counselling agency. I was extremely fit: I did yoga every day and either swam, ran, or did aerobics about 5 times a week. I also had a great social life but I didn’t sleep much!
One day I felt that I was coming down with a virus. I rested up but it never fully materialised, however, as soon as I tried to work I was hit with the extreme exhaustion and pain that nobody could explain. My response was to push, I was determined to get better, but instead I just got worse and could barely look after myself.
I was lucky to get a diagnosis as ‘ME?’ within about 3 months, at least it meant I could read up about what little was known about it. But I was frustrated that all my doctor wanted to do, was treat me with antidepressants. Eventually we agreed on a low dose of amitriptyline which helped me sleep better and eased the pain and tension in my muscles a little. Then I started a T’ai chi class and started seeing an acupuncturist with slow but positive results. After 6 months I started back to work a few hours at a time. After another 6 months 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 and there was no predicting my bad days when the rota was drawn up!
By then I had accepted that I had a chronic illness and resolved not to put my life on hold until I was better. I knew I just needed to learn how to live it in a different way to keep within my energy limits. So I decided to leave work and go travelling again and 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 – 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. I could do nothing on my bad days and it was very easy to pace! I had a wonderful time and little by little my health improved.
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 without post-exertional malaise. I then decided to build on my Psychology Degree and take an Advanced Diploma in person centred counselling. It was something I knew from my voluntary work that I was good at but had always resisted because I couldn’t imagine a job that involved sitting down all day! Now it fit much better with the way ME/CFS dictated that 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. This involved accepting my daily limitations and minimising both mental and physical exertion. My health continued improving and I got a job managing children’s homes.
5 years after ME/CFS first hit me, I found myself looking down from the peak of a mountain (Helvellyn) I’d hiked up, feeling like a blind woman who had regained her sight. I knew I was well again, I had beaten this illness.
Unfortunately that’s not the end of my story…..
With my full health returned my itchy feet could no longer be ignored. A 6 month trip around Central America didn’t satisfy the itch so six months later I was off again. However when I returned I found I still didn’t want to resume my career. Although it had been very rewarding I’d felt out of balance; I’d been serious and responsible all the time. I wanted to be able to laugh and experience joy on a daily basis, not just if I tried hard on the weekend. Recovering from a chronic illness taught me how precious life was, and not to put up with an unsatisfactory lifestyle.
So then started my ‘live life for today’ career. I did 6 ski seasons in the Sierra Nevada Mountains in Spain, first as a Rep and a Ski Guide and later as a Ski Instructor. In the summers I worked as a Walking Guide, Group Tour Leader and Hotel Receptionist. In between seasons I picked cherries, I temped, I ‘wwoofed’ and did whatever I had to, to get by. And I experienced joy on a daily basis.
Then after a relatively stressful ski season with money worries and a nightmare flat mate I picked up a virus on a plane journey. I was on my way to a brief, between-season visit to family and friends. I had so little time to catch up with everybody that against my better judgement, I ignored my bodies need for rest and rushed around seeing everyone as planned. My first day back in Spain (after 7 years of full health) I was horrified to realise I had those familiar symptoms again. Determined to look on the bright side I thought that if I rested and put all my previous learning back into action, it might just end up being a short term post viral fatigue. My management kept my symptoms mild but a couple of months later I suffered a nasty tooth infection requiring two courses of antibiotics, and that was the start of a new complication.
My gut flora were thrown out of balance by the antibiotics and I developed an intolerance to sugar. This gradually extended to wheat and gluten, then to yeast, vinegar and mushrooms. Now I had a new challenge to deal with, one I still haven’t overcome completely.
Unable to do another ski season, my job as a hotel receptionist was extended to 10 months a year. It was an easy sedentary job that I was familiar with and I could live a relatively stress free life in a very beautiful village surrounded by supportive friends. 3 years later, after learning to meditate at a yoga retreat, I suddenly knew that I wasn’t giving my health enough of a chance working all the hours that I did. It also became clear to me that I needed to share all I’d learned about self-help. I made the decision to leave Spain and return to my parents’ house in England in order to write my book. I started blogging as the ME/CFS Self-Help Guru and later decided to qualify as a life coach. Living at my parents I was able to support myself with part time work at the local convenience store.
I’m now very excited to be about to launch my own business with the aim of helping others manage chronic illness better, make their contribution and live their dream. I know I’m on the way to mine and plan to return to Spain very soon!
(This is an edited updated version of my first two posts see About Me)