Call it advanced multiple sclerosis
Multiple sclerosis and the dilemmas of life
Soon I’m going to be 64 so not quite as nimble as I was. Age doesn’t stop me having a social life. I go to the theatre and museums in London. Meet friends in one of the numerous coffee shops in our town. I go to the supermarket, buy the food and then cook dinner. Next morning I do the washing up. I have one tiny problem; call it advanced multiple sclerosis.
Positive person
I like to get things done. When I start a job I want to finish it. I have never been the type that looks back and says “If only I had ………”. Doing new things, facing new challenges, that’s what I enjoy doing. 20 years ago I could lead that sort of life and I did do just that.
In those 20 years I have not changed but something else has grown up with me. It’s called advanced multiple sclerosis. It’s now become my constant companion and I am unable to ignore it. My whole life now revolves around it.
Call it advanced multiple sclerosis
The consequences are very evident and growing. In the kitchen is a rollator and I cannot walk anywhere without it. By the cooker is the sit-stand chair so I can do the cooking and the washing up. Finally tucked in a corner is my Travelscoot so I can get about out of the house. These are the obvious signs.
More subtle signs are dotted around the house. In my glasses-case there is a patch otherwise I see two of everything. There is no step at the foot of the door from the garden into the kitchen.
Then there are the hidden disabilities. In the downstairs loo are my catheters. A shocking memory and fatigue have removed the party boy element.
Outside the house
A disabled person parking space. We live in the middle of town and parking is a total nightmare. Without the reserved space the car could easily be parked a hundred metres away up the hill.
Disclosure
I realised my life had changed permanently when I took medical retirement and it happened overnight. It then took at least two years to come to terms with this new life. I had never hidden from friends and family that I had multiple sclerosis. Now everyone else needed to know and I found this a daunting task.
Employment
I was a freelance international computer geek so stopping work was a binary decision. It was full time or nothing. Moving sideways in the computer business is virtually impossible, suddenly I had no job; I found this very hard to accept. The real challenge to me was creating a new life.
Triple whammy
Job loss and now receiving benefits, showing to the public a new persona and creating a new life were huge challenges. I do not want to find my soft slippers and dressing gown so I can sit in front of a fire and watch TV. Challenges are essential but once you are disabled the challenges are glacial. Call it advanced multiple sclerosis
I am an optimist
Someone somewhere will wave a magic wand. One day I might be able to drive a car again, stop double vision or improve my concentration. Who, what, where and when, I don’t know yet but I’m looking.
What I want to share with somebody, somewhere in the world, is that’s today I have nothing whatsoever to do.
I have travelled so many of the roads that you have and maybe this is what lies beyond.