This week will mark the tenth anniversary of the day I was told that I had MS, provisionally at least. It had probably been around for longer. I now work a three day week, can walk little more than a kilometre or two without the use of a walking stick and have many and varied cognitive problems, or challenges to put it in a more PC way. Not exactly a litany of good news, is it?
Still, after such a long journey without maps and in spite of these issues, I am actually feeling pretty good! Why would that be?
A Look Back
To look forward sometimes needs a small backward glance. To that day, August 23rd 2013. MS had been isolated as the most likely cause of various issues I had been having since a cycling crash. The crash was coincidental and various tests had eliminated a lot of really rather scary possibilities. Stroke, Motor Neurone Disease… A spinal tap, or lumbar puncture, was needed for confirmation and that duly came, although it took another year of confusion for the form of MS, Primary Progressive, to be isolated.
Like so many illnesses, Multiple Sclerosis has stereotypes. Wheelchairs, early enforced retirement, just doing less. Pain. Pain. That is what I thought would be coming. I was very scared. Terrified, to be quite honest. The future was suddenly a black hole.
A Sense of Perspective
Ten years on there are negatives. These are at the top of this post. But alongside this I can list what I still can do. Walking may not be good but cycling still is. Not as fast and with more stops but, it still going! A large lump of this blog is around cycling, after all! I still indulge my love of concerts. Still working, albeit for three days but a good three days, no padding. Going to restaurants. Travelling.
All these things are still parts of my life, perhaps with more rest built in and with a good deal of care. Whenever I feel low, which is going to happen sometimes, a sense of perspective comes in to play. My life is so different to what I thought it would be ten years ago. There are compromises but it is still rich. Full!
Friends and colleagues complement me on my resilience. Personally I think this is more to do with luck. The diagnosis of Primary Progressive meant a change of neurologist who registered me with rehabilitation clinic. Psychologists, Occupational Therapists, Speech Therapists, Physiotherapists. They cannot cure MS but they help me understand and deal with it. Keep things going. Comprehend some of the frankly weird stuff, like why walking is difficult but cycling still goes well.
Alongside great support, both professionally and from such specialists but also personally from many around me, there is the plain luck that my MS is not progressing quickly. This is where fear is still there. Multiple Sclerosis likes to hide in the shadows and shock you. A new symptom can appear and that can be scary. Still, my progression is slow. For that I can only be grateful.
There is still fear and sometimes I can still be down, that is true. I am human. I don’t wake up glad that I have MS. There are times when I miss just going for a walk. Let’s not try any inspirational bullsh*t, I am not smiling all the time.
Ten years, though, is enough time to learn. The illness still scares me but living with it doesn’t. I will not allow it to dominate. Cognitive issues can be very challenging and it can be difficult to make myself understood, especially when explaining something complex. Or just plain forget what I am talking about. This will happen. Not so long ago I would not have kept quiet, just in case my words came out wrong.
With time comes the realisation. Keeping quiet isolates you from people. Isolates you from the world and lets the fear win.
I am still scared of MS. But I will not let the fear of what it does to me restrict me. No more hiding.
So, after ten years, I am still going strong. Well, fairly strong. Not as strong as would have been the case if I did not have MS, of course. But I will take what I have. Ten years of emotion, some struggles and some positives. After such a journey without maps it is nice to say that, overall, I am feeling pretty good!
So what about the big day, August 23rd 2023? Well….. I will be working! No time to sit mourning what might have been when I need to get on with what is. And, of course, I will go for a long bike ride the day before. The annual middle finger to Multiple Sclerosis.
And a nice excuse for a grand day out
That will be it for MS in the blog for awhile. Ten years marks a good time to step back and look at other things.