MS: Not As Planned

This is not the post I planned to write.

It should be a victory post. One of the uplifting ones. I was drafting it, in the back of my mind, during a ride. Even took a nice picture ready for it. In a fit of originality a scenic picture of a river with a windmill just visible in the background.

And, in the foreground, a bike. Of course.

Instead the main image for this post features a table with some nice flowers on it, a window and a television. There are bikes on the television. Which is something, I suppose. Something to look at, led on the sofa. Which was not where I wanted to be.

Yearly Appointments

The day before the planned victory ride I had been to the hospital to see my neurologist for a yearly check-in. Not something to fear. He is on my side and is pragmatic enough to know that someone with MS needs to live their life as much as anyone else. My first neurologist was also not a bad man at all but I felt he saw me as a medical experiment.. He sent a letter to the head of Neurology at another hospital describing me as ‘an interesting case’…… Something that many friends could have told him without needing an MRI scans, Spinal Taps and all the rest……

Doesn’t matter now. The consultation with my current neurologist is far ore important. A long appointment, always a lot to review. Not so detailed as to cover every pain or tremble. The focus is more on general issues, what may cause them and, the key element, how to go forward.

I won’t go in too much detail on the appointment. Suffice to say that it was difficult – why should it be easy to talk about MS? – but the outcome was good. My neurologist knows I am very active and encourages that. Keep riding! For me that is huge! He has even seen me out on my bike but I must admit I never notice because I am in……. The Zone!

That’s my excuse anyway.

There is also no hiding. The reason I am there is that I have Primary Progressive MS. There is a light, though. My neurologist’s expectation is that the progression is comparatively mild. So I can keep going! There are more mountains to come! I will keep riding, keep going to concerts, enjoying wine. Keep living! A little more cautiously than I would like but still enough to seize on and revel in.

Meltdown

Hence the planned ‘victory’ ride. Which went wrong with around 15 kilometres to go. Luckily I planned a route that was a wide circle around home. Friends to dinner and an evening I was looking forward to meant I did not want a puncture in the middle of nowhere.

I could not plan for a puncture in myself.

First came a headache, absolutely crushing. Tension headache perhaps, result of the worry that comes before the appointment? Not sure. It was followed by a general feeling of weakness. Luckily the wind was behind me and I was strong enough to operate on auto-pilot and guide myself home. Cautiously. The closest that one can come to crawling on two wheels.

I got home and cleaned the bike, the auto-pilot clicking in again. Then a shower followed by three days of laying around doing nothing. Watching television, dozing. Not much else. Watching other people cycle, at least.. The Omloop Het Nieuwsblad and Kuurne-Brussels-Kurne. The cycling season has started! So exciting!

Not when you are just staring at it on the television, to be honest..

That nice dinner with friends was cancelled. A trip to Madrid for work fell by the wayside. Not where I wanted it to be. A brick wall day that became two that became three. Not the sequel I wanted to a positive neurological appointment.

Coming Back

Now I am back up, not quite full fitness but getting there. Of course I am reflecting on what happened, why it occurred. Perhaps the stress of going through all of those notes in that diary was a trigger? Perhaps something else? Laying on the sofa, staring at the television until it gets too tiring, it is difficult not to think of possible causes.

In the end, no amount of thinking can help. I am not a neurologist and in any case it is impossible to know every potential trigger for the issues that will come with the Multiple Sclerosis I have. Progressive, Primary, Relapsing. Whatever. They are all fairly sh*t and, even with all the best effort, beyond control. Which brings you down. If I said that I was led on that sofa feeling happy and full of hope then I would be a liar. I honestly felt pretty miserable. Selfishly sorry for myself. Pretty pathetic as well as my wife cooked, made me tea, basically did everything.

But you get out of the other side and realise that things could always be worse. I am personally feeling more optimistic because I am up, wandering around and able to do stuff. Starting to get the itch for a ride. A good sign if ever there was one! In the end a couple of days did not go as planned, a sequel to a challenging but ultimately optimistic medical appointment. This was actually a fairly heavy hit. Is it the mark of things to come? Is it futile to make plans for the future? No, of course not. It’s important to look forward. It is also important to realise that the bad days will be there and be ready to deal with the negative feelings they bring.

It helps to make the good days even better!

Note – since this was written I have been for a short ride. It felt……. brilliant!