The positive side of ME (yes, there is one!)

I have had ME since 1999. For the first seven months, I was unable to work, and then well enough to go back to work full-time.

During that time, I was bed-bound, and depended on my friends and family to do basic things like washing and shopping; even cooking meals was a major thing. As the illness was so debilitating I decided that I needed to set goals each day, otherwise, I was wasting time, just lying in bed feeling terrible.

At first my goal was to be able to go to the toilet; I had to do that. Once I had crawled to the toilet and back, then climbed into my bed, which felt so far away, I felt that I had achieved something and gave myself a pat on the back. After numerous doctorsâ visits, and a lot of rest and doing small amounts, I was ready to go back to work. That was great!

Serious relapse

I was back at work for a period of two years, until a situation at work caused me to have a serious relapse. I spent months housebound, but after several months was able to get our and about a little.

I went through the CBT programme and found it most helpful. It is now ingrained in my brain!

I then started to go to a place called Learndirect, which is basically a government-run programme offering free IT training, although I believe that has changed now. You can do the course either online at home or at the centres that are dotted all over the country. I chose to do both! I found the courses extremely helpful and they have given me a real focus.

On-line business

As a result of two of the courses I have done and the experience I have gained from Learndirect, I have discovered how to set up one’s own online business. You work when you want, for as long as you want, and have breaks whenever you want. What more can one ask for?!

Although I am far from returning to the ‘workplace’, I feel I have returned to work in a minor way, which is great.

I have been able to use the skills I have gained from the courses, to help be involved in the local ME group. With their help, I have now become the voice for people who have ME locally, by giving media interviews about what is happening in the group, when required, to help raise awareness of this dreadful and debilitating illness. We have also been campaigning for a centre/clinic for the Reading area, and now this is on the cards. It will be done by the local Primary Care Trust.

Food intolerance

Last year, I discovered with the help of being referred by my doctor to a dietician that I have several food intolerances, so have had to change my diet. This helped me to go from being bed bound last year to house bound this year, I have a long way to go before I can get back to proper work, but by having projects and goals, and helping raise awareness of ME in Reading and nationally, I am able to help raise awareness because I have the illness myself. It is great to use the negative side of ME to be positive in the form of raising awareness. If I didn’t have goals, my life would be completely different, but reaching out to others helps me focus on others rather than myself. Although the illness is tough, I cannot deny that, by God’s grace, and through the support of friends, my local church and family, I manage to cope, even when I have the worst days, am in pain and cannot get out of bed.

Organisations

I hope this story helps people who have ME, their carers, and the general public to know how it affects us. It is certainly becoming more widely known now, and more accepted by GPs.

National organisations that can help people with ME are:
http://www.afme.org.uk/
http://www.meassociation.org.uk/

You may also be interested in watching the following video that I did for my local radio: http://www.bbc.co.uk/videonation/articles/b/berkshire_me.shtml

The positive side of ME (yes, there is one!)

Serious relapse

On-line business

Food intolerance

Organisations

Miriam Potter

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