People

In 1998 my life was 'normal'. I was working as a practice nurse in a busy GPs surgery in Arnold, and having a good social life with my many lovely friends. I was doing a training course at Southwell to be a lay Reader in my church in Mapperley, and I enjoyed living alone in Carlton.

At the end of that year I went on a 10 day pilgrimage to Israel to see the holy sites of Biblical times. While I was there I had a chest infection and a tummy bug, and I never really recovered.

Hitting the wall

I soldiered on, feeling a bit groggy, for the next six months. Then in June 1999 I 'hit the wall'. I started feeling ill one Friday lunchtime, and by Monday morning I couldn't get out of bed.

I was to stay there for the next few months, feeling so desperately ill that I felt as though I was hanging onto life by my fingertips. I was taken to my parents' house just down the road in Carlton, as it was impossible for me to live by myself.

I remember lying in that bed for 23 hours a day looking at the tree outside the window and wondering… "Will I still be here when all the leaves have dropped off the tree?" In the event, I was there all winter, and still there when the springtime leaves burst forth in all their glory. I finally went home in May 2000, just about coping with daily living by having meals-on-wheels, cleaners, ironers and gardeners!

Trade-offs

Since then I have improved a lot. However, I still cannot do many, many things that 'normal' people take for granted. If I get up and potter around in the morning, I have to go back to bed in the afternoon. Then I can potter around in the evening too.

Getting some fresh air

If I go for a little walk by the river, I have to lie down to recover when I get back. Shopping is a nightmare. The combination of background music, the vast array of choices, and the dreaded queues, mean that supermarkets are absolutely exhausting.

Everything is a trade off for something else. If I have a bath one day, I wash my hair the next. Half an hour on the computer means that I don't read the paper that day. Half an hour's gentle gardening means no housework for two days. To say that it's frustrating is the understatement of the Millennium.

Life is different

Over the years that I've been ill I've had to accept that life is different now, and I've learned to find much pleasure in simple things. I've swapped my hobbies of walking, swimming and photography, for playing the guitar, listening to the radio and making hand-made greeting cards.

I've learned to appreciate the birdsong, the scent of the first snowdrops, the ever-changing beauty of the sky. My life revolves around my friends and my home in Carlton, and there is much to be thankful for.

A faith journey

Because I am a Christian, I have also been on quite a faith journey during this time. I know God can heal – I have met others who have been healed of ME. So why hasn't He healed me? (Answers on a postcard….). All I know is that I trust He is with me in this illness, and He gives me the strength and courage I need to face the future with hope instead of despair.

And although I would love to be back at work and earning a decent salary again, there is something rather nice about snuggling back down beneath the duvet at
9 o'clock on a cold, damp Monday morning, or having lunch sitting in the sunshine on a beautiful summer's day. These little pleasures are small compensations for the absolutely devastating changes that have been brought about in my life by this monster of a disease – ME. 

Self-help

I helped to start the ME Self-help Group (known as MESH) in Nottingham in 2003. At the time, we were the only county in the whole of England that did not have a group. We started with myself and two other members, and now have around 60.

I don't know how many people in Notts have ME at the moment, but we do have a regular influx of new members. 

MESH meets once a month at 'Life at the Centre' which is the Central Methodist Mission on Parliament Street in town.

The aims of the group are to provide mutual support and friendship to people with ME in and around Nottingham and to raise awareness of the illness. 

It really helps to share problems in this way - we laugh a lot together, and sometimes we cry, but we are there for each other, and it really reduces the feeling of isolation which is so common in any chronic illness.

For more information...