Things have changed in 2025, that much is clear. Not always for better. But also not always for worse. Amidst the reflections on what has not gone so well, it is important to remember what has gone well. The last post focused on what has been difficult. Now it is time for the good stuff.
Rediscovery
The fact is that I am less physically active than I was a year ago. Still quite active. Just a little less. I do struggle with this initially, to be quite honest. It is hard to be positive about losing some capabilities and I will not say how brilliant it is to do nothing, that would sound like one of those inspirational cloth heads you see on LinkedIn. ‘My son passed his driving test and that taught me so many inspirational things about leadership’. False and patronising. I would rather be making the old list of cycling targets. This mountain, that long-distance ride… not these days.
Well, it is crap to be less mobile but you need to make the most of it. Films are back on the agenda and it is a fantastic use of ‘passive’ time to watch something and really take it in. Books and reading, something that is also helping my cognitive abilities and I am noticeably reading much faster now. A hobby with benefits for wider life.
The New Stuff
It is also exciting, in a passive way, to experience new things. The left side of my brain is the most impacted by lesions. This means physical impact on the right side of my body. It is also the part of the brain that covers cognitive skills such as organisation, concentration and speech, not forgetting emotional regulation.
But the right side, the creative side, is less scarred. Of course, the impacts of these lesions are not clear cut and it is still necessary to concentrate when doing something creative. It is clear, though, that my creative hobbies have really taken off in 2025. Painting is something I have mentioned and am continuing to learn, more posts coming. The genuine peace of mind that comes with peaceful concentration and creating is a real relief. It may not be brilliant but that is not the point, right?
Drawing is another new hobby, the result of a generous gift. Every other Monday, one of my additional free days, is spent drawing or reading theory about drawing. Such learning is good for concentration and memory. An additional cognitive benefit. I will take that. Also the relaxation it gives.
Getting My Head Outside
It is also important to stay active, get outside in the air. I still cycle, of course. Just less. The grand climbs may no longer be possible without some form of mechanical doping but I still enjoy the adventure, even if the feeling of achievement is less. It is still worth the views, though. At home I still enjoy my standard racing bike even if a bridge is now a major challenge. It gets me outside, shorter and with more rest stops but still outside. Walking is also important. Shorter, slower. The plus is more time to take in what is around me and has always been. Now I realise how beautiful it is.
It is also fantastic to get out to museums and restaurants again. Concerts as well. It all takes more planning but so worth it for the moments. They are less than they were and so it is important to treasure them more.
The Medical Stuff
The fact is that I still have a progressive illness and it has certainly progressed. But it is not always having its own way. Ocrevus I have mentioned previously and it is stabilising lesion growth. Some damage has already been done and so I am not going to get better but it is certainly slowing down the development of new lesions. This will slow down the progression of what is effectively disability.
That stability gives a base to build on. This means I have also started to feel the benefits of targeted work with my cheerfully sadistic physio. The right side will strengthen as I practice more. Alongside this and new on the scene is Fampyra. Pronounced ‘Vampira’ which does give me a chuckle! It is difficult to explain what this does. Simplistically, it blocks the electrical impulses across damaged nerve cells. If I tried to explain how it would be very long and perhaps not accurate. Better to look here. An active pill and early days but initial results, measured with a walk test with my physio, are good. I also feel sharper. Good stuff that I did not expect.
Changing the Equation
Of course, I am not going to pretend that everything is amazing. The dark days when it is difficult to deal with what is going on inside me and inside my mind, they are still there. When less is just… less. Alongside these days there are good days. They are getting more, I feel. The days when the good stuff just feels so uplifting. It is a lot of work to keep adjusting your expectations to ensure that things feel good and it is not disappointing to realise that things that I used to do only a couple of years ago are no longer possible.
But it is important to remind myself of the good things, the good stuff. Learn that enjoyment is now a different beast. To look forward again. It can be hard and the shadow of progression? Well, that is not going away and I will get worse. So it is important to keep sharp. To keep changing the equation.
To focus on what I enjoy, remember all the good stuff that is still there, and keep it going.
To keep going forward, even whilst symptoms push me back.
