Year’s End: The Slow Progression of MS

2025 is coming to a close. A year where the slow progression of my Multiple Sclerosis has started to become more noticeable, both physically and cognitively. I am actually very glad that progression has been slow over the last twelve years, of course I am. Amazing memories and experiences were mine, even with Primary Progressive MS. To get to the top of a mountain by bike and realise what you have done? Unforgettable.

But all the time, underneath, MS was slowly progressing. Slowly eroding me, my capabilities. It is going to get worse. Closing the year makes that impact more noticeable. How the subtle changes, the dull intensity of slow progression, make a real impact.

What is Slow Progression?

Slow progression is invisible in the moment, which means you only notice it when you look back. That is why benchmarks like the end of the year make you reflect more on negative change. When you realise that, five years ago, you could just go for a 10 kilometre walk without thinking or walk to the local shops and back. No need to plan, to think ahead. Just do things.

I now look back in my diary, which is getting harder to write as holding a pen is harder than it used to be, and realise what has changed. Slowly, without any fuss, life needs to be planned more. Spontaneity is gone, unless it is with a one kilometre radius. Slowly, but surely, I am less flexible. And slower, mentally. Hard to get started and keep focused. Fearful. Because progression is only going to go forward. Or, in my case, downward.

My Slow Progression

I am not going to list what has changed. Take a look at the section Living With Multiple Sclerosis to get a bit of perspective. This post is more about the impact of those lists. About what that progression does. For me, it is difficult. I do try to find ways around the impact of progression and that is also a gateway to many wonderful things. Still, I miss those long walks, those mountains. Feeling confident enough in my abilities to just talk, just do things.

When someone stares at your leg because your support makes you walk like some sort of Captain Ahab. They are not ashamed to stare. So why am I ashamed to be stared at? And angry.

Feelings

The emotions, the feelings that come with all of the changes can be overwhelming. I feel a burden on those around me and yet can feel angry when words don’t come out of my mouth correctly or I forget a word and others express impatience. You f*cking try it! That’s what I think but the problem is that my reptile brain can’t get that to my mouth quickly enough to say that or, indeed, say anything. Gulping like a goldfish high on acid… whatever they look like. The anger passes, but I am still left feeling a little useless.

Still Going

That is the strange thing. I still push myself, still put up a fight. Putting up a fight means doing nice things. I can still hop on a train to Amsterdam, Utrecht, Rotterdam and do things. Well, not so much hop as stumble slowly! But still doing things. Still riding my racing bike, though the speed and power of the past are just somewhere else. That equation was easy to change as it is mine alone.

Out of Control

The equations are not always mine to control, though. In fact, few of them are. MS has the control. It is waging a war on me, a slow scorched earth campaign. Not with explosives or firebombs. Scorched earth with a cigarette lighter, a blade of grass at a time. You don’t notice anything on the day. But, after twelve years, one field is gone and the trees around it are starting to burn. In the middle of all of this, everything feels fine. But something’s burning. You quietly change your routine because there is something burning. Not burning hard, but building slowly.

Eventually, after twelve years, you notice that you have actually changed your rituals and habits so much that a part of your life is gone. No matter what fight you put up, it’s gone.

Closing

Slow progression means more is gone. The slow scorched earth means it isn’t noticeable at first but it builds. Then it can feel like suddenly you can’t do something you always did. Actually, though, subconsciously, there have been so many small adjustments going on that change is not noticeable. Ten kilometres becomes five, becomes one. All the time adjusting, every day.

It feels sudden when a door is closed. But they close, systematically. Methodically. And you are closed in more, alone. Still putting up that fight, perhaps. But a rearguard action. The scorched earth will get there, eventually. One blade of grass at a time. The year 2025 has had many wonderful moments. There are still more to come. It has also reminded me that what I have is always there, getting slowly worse. Slowly, but surely, taking some of the moments away.