August 23rd 2013. A date that sticks in the mind. The date that the results of various tests came in and led to an initial diagnosis of Multiple Sclerosis. It took another year to confirm the form. All of this has been covered before, though. What is important now, after twelve years, is to look at where I am and where I want to be.
My Current State
I have focused a lot on the cognitive issues. These continue and I will not talk more about them, other than to say that it all gets a little harder. I am reminded of a Gary Larson cartoon with a child holding up their hand and asking to be excused as their brain is full. I have the hunger to learn, to do new things. But my mind just feels like it fills up too quickly. And it is taking such a long time to just decide to do something like send a friend a simple text. The brick wall.
This stress has impacts. Relatively new is spasms on the right side. These come on quite quickly with stress and, unlike many of my symptoms, can be quite painful. I am getting used to typing with my left hand more than my right, although today it is ok. The fingers on my right hand are also developing a really annoying twitch. Highlighting the text for the links in this post has been a f*cking nightmare!
For the rest, it is more of the same. Walking bad, need supports (walking stick, leg support, friend’s arm). Cycling better although distances and power are simply less. Basically, progression. Which is what Primary Progressive MS does.
Upsides
My lesions are mostly on the left side of the brain. This is why my right side is where physical issues can manifest themselves. I am absolutely no expert on this all (and believe me, I have tried to read as much as possible) but I will take a plus. The right side of the brain is more intact. The side of the brain most associated with creativity. Research suggests that the division in brain hemispheres is not as simple as that but… I like to think it is. So there are new interests. Painting, drawing. Rediscovering books and reading, which also helps with cognitive issues.
I can also still cycle. It may be less but it is still there. And accepting my limitations, which I find very hard, means accepting new ways to enjoy the world. Accepting that a walking stick is getting more necessary means I can still do stuff that I enjoy. Try other things as well. I had my first go at pottery. Good for your hands, my physio said. I also enjoyed it.
The only difficult thing about having so much to enjoy is making sure that brain does not fill up too quickly!
Making Acceptance Fun
Accepting these changes is easier if I make it fun. The walking stick, for example. A lot of friends have latched on to the idea of making it fun, a little funky. Perhaps I was not open to that initially as I did not really want to think about the walking stick at all. But now? Well, to become part of my life means it becomes part of me. The only question is whether I buy something funky or make it funky myself. Not that I am particularly funky. But this is a bit of fun.
The Yearly Dance
I write all this as the yearly dance is about to begin. MRI, track lesions, appointment with (new!) neurologist. This time I think we will have a better idea of how Ocrevus is going. I am hoping for stability of lesions at least. It is also time for perspective. If you had told me, twelve years ago, that I would be in the state I am now I would have been happy. The wheelchair is still not there yet, although I was tempted at the airport!
Into the Next Twelve Years
There needs to be honesty, though. I am going to stop typing soon as my right hand is deciding not to cooperate. The left is doing the bulk of the work. A blunt reminder that things are just not that easy. I am also not going to lie. I sometimes end with lots of optimism but, in the end, things are just worse than they were twelve years ago and they will get worse in the next twelve and painting a f*cking walking stick is not going suddenly make my world better.
But I am trying. A song I heard the other day sticks in my mind. The lyrics do not reflect how life is for me but the refrain at the end of the song… that stuck with me. ‘Branches’ by Midlake. “It’s hard for me but I’m trying.” It is what I have been trying for twelve years and will do for another twelve years. It is not going to get easier.