Multiple Sclerosis

Five Years

August seems to be a month of anniversaries. Twenty years in Holland, which is nice. And, a couple of days ago, five years since my initial diagnosis with MS. Which is not so nice?

To ‘celebrate’, I went for a very long ride. For a change. To a hilly area of Holland, near Arnhem. Not a ‘put it out of my mind’ exercise. More something to remind me how far I am from that day, five years before. A nice day, rain holding off and a bit of wind.

During the day I would take the odd look at my Garmin, register the time and think about what was going on at the same time, five years before. Of course, I cannot remember the exact times, these were just approximate. The initial appointment with the Neurologist, which I must admit I had given me a bad feeling for around a week during the initial tests, was in the morning. A fairly brief appointment, the initial results from MRI’s (lesions consistent with MS) and various other tests (consistent with MS, stroke and cancer eliminated) and the somewhat business-like scheduling of a Lumbar Puncture two weeks later for further confirmation.

Or a Spinal Tap.

I always wondered where Spinal Tap got their name….. Not how I wanted to find out…

Suddenly we were going to cancel a long-awaited holiday for a process that a comedy band had named themselves after. Surreal. Funny film though.

Calmer heads in the form of a hospital receptionist prevailed and we took the holiday. Three weeks was not going to make a difference. Go on holiday.  And it was a very nice one, if slightly overshadowed. Well, very overshadowed, I’ve said before that we just did not know what this all meant. Visions of wheelchairs, that sort of thing.

Anniversaries tend to lead to reflection. But, five years on, it is important to focus on the good. I broke my distance record that day with the bike and, more impressively, did a fair amount of climbing. A bit of zigzagging around the Veluwezoom and 1,400 metres was the eventual total.

 

The fifth anniversary of the initial diagnosis was a good day, active in body whilst mentally comparing where I thought I would be and where I am. The good things. There have been enough entries about what is difficult. I am active, working full-time, still enjoying social events, holidays, concerts. Within that, I know my limits. So I rest, sleep more than I used to, don’t go to busy places at certain times, always make sure there is an easy exit for a rest, have my earplugs with me just in case, make sure a busy period is followed by a compensation period of rest. Lots of small print that I need to consider around my routine.

The small print is just that. Small print. Nothing more.

Not every day is perfect and I am not completely serene and at peace with MS every day. Sometimes I am upset, angry. This needs to be put in perspective, such days are outnumbered by the good days at a ratio of four or five to one. Sometimes the good days are very special. The fifth anniversary was such a day, spent revelling in my mobility, reminding myself that I am in a far better place than I thought I would be.

Strangely perhaps, an anniversary to be celebrated, for better and not for worse.

* For those who are interested, the ride was 214 km alongside the 1,400 metres climbed. I cannot find a good link about the Veluwezoom in English, the Wikipedia entry is very brief, but it is an area of hilly heathland near Arnhem. 

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