I like to stay fit. That’s probably apparent through the more than occasional posts about cycling. I look very healthy, especially at the moment as I have been taking advantage of a good spring and spending a lot of time in the saddle.

This means that it can be difficult to tell that I am apparently ill. I am glad about that, of course. It would be stupid, wrong, to say something like ‘I wish I looked ill’ or ‘I wish I was less mobile’. The thing  with MS is that a lot of those who have it look…… and its a terrible word to say….. normal. What is ‘normal’ anyway? Who would want to look ‘normal’?

That’s a whole new post!

I’ve written before about the invisible nature of MS so won’t repeat that here. It does help to be open about it. Professionally, I tell people who I have to deal with whom I work closely so they are aware of potential issues; the odd bout of fatigue or the speech problems will manifest themselves during a presentation or workshop. Either that or the annoying habit of forgetting what I was talking about halfway through a sentence which leads to an attack of waffling. I have to work on that one…..

Sorry, what was I writing about?

Very bad joke….. MS also adversely impacts your sense of humour, apparently…..

There are ways around these issues. Taking notes, recording meetings so you can listen back, making sure I have very clear prompts. In private life, it is just about making choices and making sure friends are aware. And, if I sometimes skip something because it may be too busy, like a kid’s party for example, it is accepted good-heartedly. My slightly odd concert habits are also met with amused tolerance.

Around ninety percent of these simple tricks have come from medical advice from a clinic that I attend. I will call it a Revalidation Centre  as that is the closest I can come to the Dutch (Revalidatiecentrum). I have often mentioned the value of this clinic which I attend every few months. One of these appointments was in the last week. Just my usual check-in with the usual doctor to see how it is going. A regular occruence that has been key in providing amazing support. A good appointment, not something to fear, something that opens the doors. I mentioned ‘normal’ above and not looking ill. These appointments are absolutely key toward this and I need to be honest. Just run through my personal medical diary and list the good and bad ready.

Something I have done a lot over the last four years and is familiar.

This time, I hated it.

The reason why? I don’t really know, to be honest.

The doctor is a very easy person to talk to and the results of the meeting are always good suggestions. I can do some cod psychoanalysis and voice a suspicion that, amidst all of the worry about what everyone else perceives, I forget the impact on myself. There it is all listed. The odd couple of days lost because of tiredness. Sudden pain in my right foot. Double-vision when tired and whilst riding (note that I stop and rest when this happens!). Bad balance sometimes. Falls when you least expect them.

Trying to be positive means focusing on the things that have gone well. When you list what is not going well, it is quite confrontational. Along with that is the feeling that things may be getting a little worse. There is more to consider, more issues.

It gets a bit much. And, for a moment, there is a bit of selfishness, feeling sorry for yourself.

Just one day.

I think it is simply something to be confronted with the fact that you are ill. Listing the latest occurrences and realising these are all part of Multiple Sclerosis. That, no matter how strong I am and how active I am, there are still the little symptoms such as those listed above. On their own, they are dealt with.

Listed and discussed? It’s quite something.

Of course, the appointment was good. Good advice, always welcome. Keep cycling! What I need to hear! I slept on things and was more positive the next day, that’s certain. Perhaps, though, this was a time when I was confronted with what I have. Just making that list reminds you. I don’t expect the doctor to wave a magic wand and make everything better, by any means. However, there is little more to that can be done. I have had so much support, it is a case of acting upon that advice.

Perhaps I was waiting a little for a magic wand?

It doesn’t exist.

Instead there were uggestions on how to go forward. And keep going. A lot of them involved enforcing the advice of the last four years of support. More honesty toward all around me about what I can and can’t do and encouragement to do what helps. A positive way forward. Strong medical support needs personal honesty. That means personal confrontation. And perhaps a little personal darkness, just for a couple of days.

In the end, a small price to pay to keep on that road to the future.


Russ · June 10, 2018 at 21:15

Thanks for these “behind the scenes” looks into your life and situation, Steve.

No matter how strong the support structure, there are bound to be these occasional days of frustration, but it’s a valuable resource (for all of us) to read of your resilience and positive attitude going forward.

Anonymous · June 10, 2018 at 23:04

Keep the light burning bright Steve. You must be a fantastic example to other sufferers.

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