About a month-and-a-half-ago I was riding my bike. For a change. An unremarkable ride, good distance and speed in good conditions but not much else to really get the blood going. Still it sticks in my mind as it was the first time I had issues with my eyesight. Not blindness or anything so dramatic, more the realisation that I was thinking ‘Where am I?’ in relation to the curb; perspective was shot! And when I was about to cross the road, I to stop and look very hard because it was difficult to make out how far away a car was.

In a moment of self-diagnosis, I closed my eyes alternately.

The left eye?

Nice and clear……

The right?

Like a bad, cheap psychedelic rave video. Unclear, blurred. Scrambledeggscope.

The rest of that ride was very cautious and was followed by an irrational response. Reading blogs about one-eyed cyclists. I mean, for crying out loud.

Then the fear comes in. The vision issue was combined with an odd feeling of pressure in the head that I had been to the doctor about and was suspected to be a virus, nothing to do with MS and a suspicion confirmed when I spent most of the next day throwing up! Nothing unusual but that started to play on my mind as well. I felt quite scared. Normal enough with these kinds of problems but grounded in the strange feeling that, with MS, it is something that I should, for lack of a better term, expect..

Still, you can never assume that it is MS and hence the first visit had been to the doctor. Now it was an e-mail to the local MS Nurse, more around the eyesight. With her usual promptness (and remarkable understanding for my unintentionally hilarious written Dutch) an appointment is made with the neurologist for later the same week.

And it’s a good appointment! Explanation of how something like a virus can, for lack of a better term, bugger me up more and yet differently to others. Transient dip, don’t worry. I am reassured. It is true that the eyesight issue seems to be alleviating. No other issues to report other than slightly more intolerance to heat this year. Nothing unexpected, all fine as it cane be.

But an MRI would be a good idea to see how the lesions are going……

Of course it is. Yet suddenly I am back there again, a place I last visited four years ago. That strange place where I am waiting for tests and results. Of course no comparison to the earlier experience when the battery of tests were started that led to the first diagnosis. The list of issues/diseases/whatever-the-hell-they-were that was eliminated is still a little terrifying. Cancer, Stroke, Lyme Disease….

At least the MRI now is based on something a little more certain. So why do it?

I mean, I will find out that the lesions have grown or stayed the same; perhaps a little repair here and there but the nerves will never be as optimal as they were. To corrupt a marketing expression, a ‘lose lose’ situation because it will either be vaguely OK or not. The neurologist could look up say ‘Hey, you don’t have MS’ but….. he won’t. Lesions don’t go away to that extent. It is either ‘you have MS and the lesions are stable’ or it will be ‘you have MS and the lesions have grown’. Do I really want to know?

It’s then that fear really starts to make itself at home. It will be a bit of a wait for the MRI and the results thereof; Friday 13th October will be the big day.

For F*cks Sake! Friday the 13th?

A bit a wait. I notice that I am starting to not cope so well. A lot of the help I have had in the last years has been to practice the skill of taking something troubling and putting it in a compartment, examining it and then moving on. This time, that’s not working so well, I just can’t put what is troubling me in a little compartment. Distracted among others, distant perhaps, and finding it difficult to put things in to words. Getting irritated with others as well. Don’t they know what I am going through?

Of course they don’t. Why should they? What are they going through? The worst element of fear is the selfishness that comes with it. I am scared and you have no right to take up my time.

Alongside the selfishness, fear also makes you more insecure. Every action is analysed. Why did I do that? Why did I trip slightly? I’m shaking more, does that mean things are worse? Why can’t I make a decision quickly? Was I too direct that person? Am I just getting paranoid? Why was my colleague so brief with me on the phone?

Because he or she is busy. Nothing else.

But the demons in my mind that come with fear are settling in, getting comfortable.

For me distraction is the only way to unsettle them. Positive distraction. And there is plenty of that around. Seeing old friends at a rather lovely wedding and making some new friends there as well.  Of course, life is not Four Weddings and Funeral and so weddings will not happen every week so that is not a robust means of distraction. But people are only a mail away, a call away, or a stroll away.

There is also the bike. Or bikes. It couldn’t be a blog of mine without mentioning the bikes! But, when I feel fit enough, I am out on then gorging on the rich colours of Autumn whose warmth scares the demons away. I remain very fit and, unlike most cyclists, increase my rides as the weather becomes crisper. Fewer people on the road means I can relax more. More social as well. A strange bond between cold weather riders means a ‘hello’ is more likely. A union of the insane.

But those colours! The heart just……

There is also sensible reflection alongside distraction. The more I read, the more I am reassured. Not like four years ago where the internet seemed full of horror stories but, since then, my ‘bullsh*t filters’ have become quite effective. The blogs of others with MS, dealing with the same issues of uncertainty, are comforting because they make me realise I am not alone. Even better when those bloggers are also cycling freaks as well, reassuring that MS does not mean that stops.

There is also the moment of happiness when you read that ‘most MS patients are mobile for 15 years after diagnosis’ in a scholarly article that I became aware of through one of the MS groups I belong to, effective additional screens to reinforce the aforementioned ‘bullsh*t filter’. I will only change that slightly to ’15 years from reading that particular article’ which will take me to 57 summers. Hell, let’s get optimistic!

In short, I plan to stay mobile.

The various distractions did their job and the interlude when fear was dominant was kept short although, at the time, it felt never-ending. There are too many good things to think about and so it is easy to evict the demons, they take up a lot of room and are lousy at paying rent. Easy to say but it is better to look forward. Next year’s big challenge ride is in planning, one more challenge to do this year, away from the bike concerts to look forward to……

Friends to enjoy.

That will keep me comfortable in the big, dark, noisy tunnel of the MRI and will keep me moving afterwards. Friday 13th is just a date and it will be followed by Saturday the 14th. And Sunday the 15th.

So, why do it?

Because it is good to try to know what is going on, even though to be honest no-one really quite knows.


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