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.
A great post dealing with my main struggle. Adjusting mentally to MS is so very hard and I don’t think I am giving myself enough time but equally I feel as though I’m running out of time (if that makes sense!)
Sam x
Very true – I struggled for ages and ages (still do in someways), but it was definitely the hardest adjustment to make.
x
Oh, my. So sorry Mike is struggling. Hope he finds that light…
In my case, after being diagnosed and having a dreadful, debilitating relapse, I spent a lot of time worrying about the future, which – PLATITUDE ALERT – did not allow me to enjoy the present very much. Fortunately, things did get better. I know I was lucky. Thanks for the reminder to find happiness where and when you can.
I know exactly what you mean. My health was going downhill so fast I couldn’t seem to pause for breath. The physical and mental adjustment sadly don’t seem to go in tandem, leading to huge imbalances.
What a life, eh?! Darned MS.
X
Adjusting to MS seems to be very difficult and life changing. I am glad to hear that you are doing your best and trying to fight it back. May this holiday be a better experience for you.
It certainly can be – you definitely need to have a good support system around you 🙂
x
I can certainly relate to the points you have made, having had PPMS for over 25 years; and it is very hard when you realise that yet another activity you used to enjoy has gone for ever. Each year the list gets longer. But you are right, one should not dwell on pre MS activities but try to set more realistic targets but even so, when you consider how diminished they have become, it is hard not to get depressed.
Hi John,
I don’t have progressive MS, but I can certainly relate to activities being curtailed. And you are right, it’s about concentrating on what we can do, not what we can’t. And also finding new things we can enjoy!
x