Sometimes it is hard work, dealing with this MS thing. There has been good and bad, that is clear from the reflection pieces I shared in the last month. Today, though, it is just hard. Hard on the mind. So I will try to set it down. The state I am in at the end of 2025, separate from the positive and negative pieces I have shared over the last couple of weeks. And yes, the title was inspired by the Belle and Sebastian song.
Dealing with Progression
The impact of MS has grown. There is some stability with Ocrevus and something of a fightback with Fampyra and the work with my physio. Let’s look at the cold facts, though. Yesterday, I went cycling. It was very hard to get the power to climb a trail over a small wildlife bridge. Strava shows my fastest time five years ago as something like thirty-two kilometres per hour. Yesterday, a slow fifteen. It was hard.
Cycling is a big headline. It also reflects wider decline. Everything is less than it was. Physically and mentally. That can be hard to deal with.
A Life of Constant Planning and Preparation
I simply need to plan far more. Going out for a meal can be something of a military operation. Assess the place, reconnoitre on arrival and check where the toilets are, make sure I have taken my meds in good time before eating, especially Fampyra which can cause seizures if taken too close to food. I really don’t know why! I no longer just jump on the bike for a ride but check the route to make sure there is a bench I can sit on for a break. I stop a lot more as well. I seldom do things alone but usually with someone who I can lean on, borrow an arm for stability.
In the end it is just planning. Not a big deal. But nothing more spontaneous. That is demoralising. And drives home the realisation that I have less resources to use.
Less
Less. That hurts. I work hard on maximising what I do have. It cannot be escaped, though, that everything is less than it was. I have my new hobbies, painting and drawing, and the old hobbies I have rediscovered. But even with incremental improvements through meds, it is noticeable that I just have less resources than five years ago. It will continue to get less. It can be hard to keep a positive outlook with a progressive disease. And yes, I do hear all these people saying ‘JUST BELIEVE IN YOURSELF!’ I do. MS does not care about that though.
People
I absolutely love my friends and family. The friends probably get bored of hearing how much I value them. Family are mostly in a different country but they are there. My partner is as well. So why be negative about people?
There was the woman who really stared at how I was walking. Unashamedly. The people who have stared at my suspension bridge-like rubber supporting aids. They are unusual, I grant that. But a quick look is enough. Again, the lack of shame as they just stare. Do they do the same for people in wheelchairs?
More difficult are those who do not share any patience when I am struggling with speech or physical movements. Some have spoken as if I am stupid. I am not. It is just difficult to get the words from my mind to my mouth. Why don’t you try it?
The State I Am In
All in all, it is difficult to say anything positive. I am still making the most of things and doing as much as I can and am enormously grateful for the medical support I have and the support of those friends and family who more than make up for the idiots in life. Still, it is not always easy. When simple actions like writing become difficult because it is hard to hold the pen, then it hits just what is happening. Tells me the state I am in. It is getting slowly worse.
I will keep going, of course. It is just hard work sometimes. Still, I need to keep going. No point in sinking without a trace.