Background to the Ride: symptoms and concerns
It’s now a short while since I was diagnosed with MS. My mind is still spinning overtime, trying to work out what this means for me; what I can and can’t do; and the extent to which my love of cycling will need to change.
Each week since diagnosis seems to hold of MS-related highs and lows as I learn more about my condition, and my reaction to it. This week has been no different and my symptoms – pins and needles, hypersensitivity and numbness from the waist down – have not changed.
The eye issues I’m having with my vision now seem to have a medical definition; I’ve dabbled with various medicines; found out more about the complex web that is the UK NHS; and struggled to adapt to a new MS-diet.
Then, to end the week, I tried to cycle the “Heart of England 300km Audax” – a requisite qualifying event for this summer’s Paris-Brest ride that I still hope to enter.
The issues I’m having with my vision are a real concern. Whenever I’m out on my bike for any prolonged period of time I cease being able to focus. The problem then worsens until I have to abandon wherever I’m going. The week started with me testing these new symptoms: trying to work out how to avoid them; and what triggers them.
I’d done some web-based research that suggested a rising body temperature might be the culprit so (going against years of “training” as a cyclist) I set off for a ride with a self-imposed heart rate limit: neither efforts nor sprints; and a relaxed easy pace throughout. But the outcome was all very concerning. After a gentle couple of hours riding, my eyes started to get confused. From that point on, the ride became increasingly scary. And slow. So slow in fact that it got dark, which only worsened the issues I was having. I tried to shake away the symptoms, but my brain was playing tricks on me. By the time I got home it was late. And I was tired, and rather worried.
By coincidence, the following day I had my first appointment with Bristol’s MS nurse. She was pretty sure that my condition was due to “Uhthoff’s phenomenon”; caused by a temporary rise in body temperature. We discussed its implications: there’s no cure, either of the symptoms or the condition, so just has to be managed. The suggestion was to stop for 5mins for every hour on the bike and never to raise my heart rate about (an arbitrary) 150bpm. Both these rule out future bike racing for me, but I was happy to work on the theories.
Frustratingly the MS nurse also said that the steroids I had been on were the wrong ones – I had been prescribed predmisalone and it should have been methypredmisalone. So the up and downs I had been experiencing as side-effects had been in vain. She put me on a new medicine called Gabapentine – designed to dampen down pain associated with neurological issues (i.e. the pins and needles I have).
I continue to pursue an appointment with a neurological consultant and, frustrated by NHS waiting times, I’ve booked a private consultation at the earliest opportunity: in 5 weeks time (at £300 a session!) With all this new information, this week was a taxing one. A couple of nights I couldn’t sleep as I mulled everything over in the early hours. By the Friday I was prettypale and exhausted. That night I took my first Gabapentine -“do not drive or operate heavy machinery” – then set my alarm for 4am on Saturday morning so that I could enter the Heart of England audax.
The Heart of England 300km
The ride started in the rain – and I started slowly. I abided by my heart rate maximum rule; and stopped every hour. The latter was the more frustrating as I had to abandon little groups of companions, but my legs felt surprisingly good on the bike. It was only when I left the bike that the pins and needles reappeared.
An unexpected issue that emerged was that, in a determination to stick to my new MS-friendly diet (see: https://cyclingwithms.wordpress.com/2016/08/28/an-ms-diet-science-art-or-unwelcome-distraction/), I was struggling to find appropriate foods to eat at each food stop. I do not know how much of a benefit this new diet is, but it’s the only thing that I can actively do to manage my condition. Even if it only improves my future chances by a marginal percent, I’m going to pursue it and, psychologically, it helps knowing that I’m doing “something” to fight the otherwise unfightable. So: no dairy; no meat; and very much no saturated fats. As such, the menus at each stop were a killer: delicious fatty cakes; bacon rolls; ham and cheese baguettes… but I had to eat. My day’s nutrition ended up reading: food stop 1: baked beans and toast; food stop 2: baked beans and toast; food stop 3: potato and baked beans; food stop 4: potato and baked beans. My body struggled to cope in this regard.
Regards the problems I’ve been having with my vision, things were fine until around 180km when things started to get a bit unfocussed. The next stop was still 20km away, and I got there slowly and with growing concern. I told my story to the guys with me and one rider’s wife (of 30 years) turned out to have MS. “Enjoy life while you can,” he said prophetically. But a long-ish break really helped – I knew that the end was in sight and could ride the last leg as slowly as was necessary. It turned out that this was very slowly indeed. Partially this was entirely due to non-MS symptoms (which I wasn’t too concerned with): saddle soreness (although this got bad); exhaustion; tired legs; inappropriate nutrition… but, for the last 20kms, my vision issues were back and were a nightmare. I kept stopping. I lay down on the verge by the roadside. I poured cold water over my head. But I had hit a blurry wall – and completion became an exercise in survival.
I finished alone, and in the dark. The marshal at the end looked at me and said – “You look pale, son.” I was pleased that I still look young enough to be called anyone’s son.