Living with MS
Open Door - November 2009 page 8
In particular, we were contacted by people who now have the perspective of having lived with the unpredictability and variability of MS for some years. They recalled their own reactions to being diagnosed in their twenties, and the impact of MS on their plans, hopes and fears for the future. But, as this contribution from Adrian Goodman illustrates, they also wanted to say that in retrospect, new opportunities do arise, sometimes unexpectedly, and offer reassurance that it has been possible to find positives in the big negative that MS brings.
Life goes on
I started having problems in 1990, just after I got married. I never really mentioned it to anyone. Life carried on and my MS got worse until I had to face the fact that I was making myself ill by pretending nothing was happening. Eventually I ended up in hospital with a very bad relapse, probably brought on by trying to be Mr Invincible.
Reality hit. I might not be able to work again as I lost my speech and vision and just about everything else during relapses. I really didn't see much future on sick benefit. I taught myself to touch type and applied for a place on an AutoCAD course but had another massive relapse and lost my vision. I really didn't see much point in carrying on.
My turning point came when we decided to start a family. My consultant reassured us there was no reason we shouldn't have a family although there was a small risk of passing on the MS. Our sons were born in 1994 and 1998. My wife continued working and I took on the role of house husband.
When the boys got older, I enrolled on a computer course at the local library. This led to me volunteering at a local centre for people with learning difficulties. I found I had a great rapport with them so it was suggested that I should think about IT training as a career. For the last three years I have worked twelve hours a week, have taken every course that has been offered and gained an NVQ. Now I'm an assessor helping other people start their new career.
Since I've been working my MS seems to be on the back burner - perhaps because I don't have time to think about it or because I have a life and don't intend giving it up for anything.
On another positive note, the children are learning how to cook and have the meals ready if I'm at work. Their incentive? My money goes towards some amazing holidays! They have swum with dolphins in the Caribbean, ridden quad bikes across the desert and seen some fabulous sites around the world.
I am 45 now and a great believer that the stronger you are the more you have to fight with. I'm a member of the local gym and also try to swim every day. I only do what I feel able to but the muscle tone is still good and, although I can't walk any distance, I still manage without a stick around the house. To me that's a result.
This may sound trite to someone newly diagnosed, but life does go on - either with you or without you. You have to make the most of it and be part of it.