Multiple Sclerosis

A Personal Reboot

Nearly everyone does it. A weird problem on the computer that looks like it can only be fixed via some weird process. Then the thought occurs. Just switch it off and on again! Reboot! A problem solver so many times!

It works for computers. Not for humans. If you switch yourself off, that’s it. No coming back. But there is room for a mental reboot. In my opinion anyway.

Some Background

My 2024 has been, more than most years, a bit in the shadow of Multiple Sclerosis. It started with a hernia operation, which is not MS of course. I am enough of a medical specialist to know that! Recovery was impacted by MS, though. After this came black hole lesions, Ocrevus, MRI’s and progression of symptoms. That progression started to impact so many things I love to do. Too many concerts cancelled. Going to a museum or walking around a market became too much. Anything that was more than kilometre on your feet. Even cycling, the ivory tower upon which I have leant. The right side was getting noticeably weaker.

Personal Impact

How did I feel, personally? Well, not exactly overjoyed to be quite honest. Actually, it got demoralising. Let’s not make up some story of perfect resilience or remorseless, unrealistic positivity. I have felt sometimes down, angry. Fed up. Not constantly but also more than usual. As though life was going a little on hold. That makes me hard to be around for many people. That can lead to the choice of a bit of self-isolation, especially as actually doing something was getting more challenging.

I did not accept all of this. A toxic combination of stubbornness and sadness. Not healthy and quite lonely.

Help

Fortunately, despite this attitude, I am not alone on this and there is very strong medical support available. The focus of this is not curing me although it never was. There are no cures. Ocrevus will hopefully stabilise the lesions and, although the damage done means that symptoms are still going to progress, I have got to believe that there is a stable basis to work from, to build on.

That is where the support comes in. Physios are helping me reawaken the muscles on my right side as well as providing walking aids that give me back so much. A walk to the train station in the morning and back in the evening. It does not sound like much but it feels like the world is reopening somewhat. And the people in that world have been patiently welcoming.

A small support an the world feels larger.

Acceptance…. Again

Emotions around this are not linear, of course. The first draft of this post was…. miserable. Some days when I am alone with my thoughts it is difficult. I am working hard to accept this. Acceptance is important and so difficult, no matter how much I have talked about it. The mind is full of memories and they can be painful as they remind you of what is no longer possible. Let’s also not forget thatMS is not good for a stable mind. It is stressful and can be draining, not to mention the impact of MS itself.

Part of acceptance is getting the mind on to other things. My books, movies, cooking, this blog, maybe some other pastimes. Getting creative. Occupy the mind. Treat it like a muscle. Exercise it. Acceptance means realising that some things cannot be done the way they were. So do them differently and look for different things.

That Reboot

It helps that in the last few weeks things have felt much brighter. After a year of cancelling concerts, have been to two and have three more planned. I have been eating out again, not just in local places but in Amsterdam and Rotterdam. London, even! I have attended sporting events, the Tour de France for women. A lot of walking and not always comfortable but made it thanks to those walking aids. It is also fun, exploring different activities. Benefits as well. Concentration is improved by reading a book. Relaxation as well. Those physios are also helping me to keep riding a bike as well. It’s not gone, just less!

It is important to keep a level head and stay honest. Indeed, nothing in life is linear and this wave of optimism can be impacted by small problems. A fall due to foot drop was an example. But I am still alive, and after a difficult period, trying this idea of a reboot for myself. Enjoy things, enjoy life. Accept, though, that life is different and learn to embrace that. My private mental reboot.

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