Tag Archives: progressive MS

The Ghost of Christmas Past

ghost of christmas past

Mike has written a guest blog post about adjusting to life with progressive MS:

On Christmas eve 2010 I was in hospital for an unrelated illness. I had already been to see my GP about a tingling sensation in my right arm and was waiting for an MRI, so they decided to do it there and then.

Then came the worst Christmas present ever. “You have over 15 scleroses of the myeloma, which indicates you have MS” said the consultant before discharging me to go home for a very uncertain Christmas.

I was 58 years old and had been retired for 3 years. I was driving double-decker buses part time and took part in long distance mountain bike challenges all over the world. Now I drive a mobility scooter with a top speed of 4 mph as I can only walk a few metres, my balance is shot to bits, my life has been completely turned upside down.

That’s the physical side, the mental side is another story. Frustration, fatigue, anger, depression, black holes, lack of confidence, I’ve had them all.

There are many aids available to help with the physical disabilities, mobility scooters, power chairs, stair lifts etc, but the mental side requires a huge amount of self-will , self-management and goal setting just to list a few and this is where I am struggling.

I have a very long-suffering and understanding wife, and Wendy, the MS nurse who is just wonderful. My wife has to put up with my frailties when I fall into the black hole and refuse to talk to her for days and am unable to give any explanation for my behaviour. I get frustrated when I can’t do many of the things I used to do and love – walking the dog, gardening, cycling etc and then become angry, get depressed and the cycle begins all over again.

Over the past few weeks, Wendy and I have been exploring ways of combating these issues and I really do believe with a lot of perseverance and talking to professionals and loved ones, there is light at the end of the tunnel. Dwelling on pre-MS activities and pleasures does not help, but instead looking at what pleasures I can achieve today. Setting realistic targets and reveling in the enjoyment when I achieve them, and always pacing myself to try to minimise the awful effects of fatigue.

Of course, I will never defeat MS, but if I can go some way to combat the pain and misery of that wretched Christmas present of 2010, I am going to give it my best shot.

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