Elaine's Story

"For me, the course was like winning five numbers plus the bonus on the lottery"

Elaine
Birmingham

In September 1999, I was suddenly taken ill, and at this point, my life changed dramatically. Everything that I did without thinking about became an obstacle to me and I was unable to see a way forward.

It wasn't until late 2000 that I was finally diagnosed with ME, and then the following year, Syndrome X. I knew absolutely nothing about these conditions. Health care professionals were stabbing in the dark at ideas and there was me trying to regain a 'normal' life again. I so much wanted to rid my body of this alien but nothing was working. Medication after medication was tried but I could see this wasn't a way forward in my fight to regain some normality.

In May 2003, at an ME meeting, I met a lady called Vivienne Thorpe, who introduced us all to the Expert Patient Programme and I could see that this might be the answer I was looking for in my fight to regain control over my life. It was going to do no harm and it was free, so off I went on my new discovery.

The first obstacle was going to be the fatigue as the course was once a week for two and a half hours. Would I be able to stay and concentrate for the whole of the time? To my surprise, as this course was so uplifting and everyone, including the volunteer tutors, had a long term health condition, we all bounced off one another. We gave each other support to complete this, and as we were all actively involved throughout the course, the time was never an issue.

There were fifteen people in our group, and all of us had different conditions but all suffered fatigue, so we knew what it was like to experience this little understood symptom. The course was scripted and we had 'free think' sessions where all of us contributed to self-managing our conditions. We learned how to manage fatigue, and deal with communication problems. Healthy eating played an important part of self-help.

Each week we had to 'action plan' and have a goal set, so we could report the following week how we all got on and if we managed to achieve our goals. This could be anything and it was amazing to see people who had such disabilities make a tremendous effort to do something that was important to them and then go on to achieve this. By the end of the six weeks we had all gained so much more confidence, and felt less pain in our bodies, as we had learnt cognitive techniques and many people like myself had now stopped their medication.

What an uplifting course and such a simple way to learn how to really give you some self-help. For me, the course was like winning five numbers plus the bonus on the lottery. Not enough to change my life forever but enough to make a difference.

I felt so enthralled by the programme that I applied to be a volunteer tutor. I have now been a tutor for a year and I cannot believe how much this has transformed my life. I have now taken courses in Exeter, Launceston and Liskeard. To think a year ago I could only manage to drive fifteen miles maximum as the fatigue was so crippling!

I have met so many wonderful and courageous people who just want to lead 'normal' lives again. We don't want medication, we want to learn how we can self-manage our conditions and have guidance on the best way forward.

The course is a must and it comes with the highest recommendation from me who has learnt to live with ME!