Usually, when I’m out on my bike, I’m very much there in the moment: soaking in every sight and smell; feeling every bump in the road. The turns that come and go are seen and noted, the little descents are enjoyed and little climbs cursed.
But sometimes I find myself with my mind elsewhere – thinking, wondering… When I get like this, if I were stopped and asked what or where I’d just ridden I wouldn’t know. I’d have just been subconsciously following a road, up and down, left and right, but my mind would have been elsewhere, turning over and over some imponderable.
Who we are, and what we’re doing with our lives. And why we’re doing it.
Yesterday I floated out, above myself, and continued to zoom out and out. My little speck surrounded by dark. By lashing rain. A little dot, legs turning and turning, moving slowly (very slowly) back towards Chepstow. I had skipped a couple of doses of Gabapentin (for reasons I’ll explain) and my pins and needles were extreme. I had them all the way down from my belly to both feet, burning toes, a swollen tingling in both arms and my vision was utterly distorted.
What am I? What remained?
I thought I could ring-fence my upper chest, my neck and “me” – my consciousness. I was very much still there. Then my neck and shoulders started to really hurt – not MS related – and I laughed to myself that I was still there. Somewhere in there, the front of the brain, just behind the eyes. Maybe that’s all you still need to be “you”.
I have asked the same question of every healthcare professional I have met since diagnosis – will cycling in any way worsen my condition? The answer has always been “no“.
I wasn’t even in pain. Not “real pain” – pins and needles are just discomfort. And I was weirdly happy. Me against the elements. Being tested, but nowhere near to being beaten.
Background to the ride
I still have a pipe dream of entered the prestigious Paris-Brest-Paris bike ride in August this year. To achieve this, a series of qualifying events have to be entered – the dates of which meant that the “Brevet Cymru 400km” became, for me, an essential ride to complete.
In the 7 day run up to the ride I was feeling more in tune with my symptoms and how they react to the drugs (“Gabapentine”) that I was taking. The side effects of the drug were getting more noticeable though – it was becoming obvious that I’d get really spaced out and tired an hour or so after a dose. With this is mind I dropped the midday dose – my nerve-misfiring felt under control and manageable – and instead enjoyed the drug sending me to sleep at night.
Wednesday was a really not-good MS day – the rest of the week was ok. At times on Wednesday I was struggling to walk – really fatigued, muscle stiffness and pins in my feet – but I didn’t want to tell too many people. Or to moan. Because on the Saturday I was planning to cycle 400km.
The route stretched from Chepstow in East Wales, all the way across the principality to the sea… and then back again. My alarm was set for 4am.
Audaxers start in all their finery. Shiny cycling gear and high-spirited banter. Back pockets are full of food, and bodies full of energy.
Within a couple of hours I felt like a bedraggled mess. I was by the roadside desperately trying to put on my second pair of gloves – but my fingers were too cold to move. I had stopped being able to change the gears on my bike because I’d lost feeling in my left hand. My “windproof” jacket was akin to holding a tissue to the rain and I was completely soaked through. I had already had to stop 4 times to go to the toilet, losing whoever it was I had been riding with.
I had 320km further to go.
If the first chapter of the ride was a freezing cold struggle, the second chapter was a much more uplifting tale of camaraderie. Two fellow cyclists from my club took me under their wing and the roads started to go past much easier. We chatted often, mostly not – but now I had a wheel to follow, and occasionally lead, progress seemed fine. One positive side effect of the continuous rain, and body shivers, was that my body was certainly not overheating. My vision was unimpeded – and I only first felt the twinges of distortion over 100 miles in.
The furthest point from home was the sea. As we pulled away we guessed at the time – having not checked it for half a day. I guessed 5.30ish… but it was already 8pm.
The third chapter of this ride was all about a battle. After patches of brightness during the afternoon the rain had set in: firstly, a misty, almost pleasantly cooling version; then drizzle. Then with a furious kick at the end, a torrential downpour that brought mud and leaves gushing down onto the tarmac.
I followed red tail lights through the blackness. Up and down. The road surface chopped and changed – but visibility was too bad to see it coming: I just felt new pattern of vibrations and a rattle of fittings.
My pins and needles eventually got too much and I took the gabapentine that I’d been delaying – I was scared how drowsy it would make me because I still had over 100km to ride. I was about 6 hours past my bedtime and I knew that I needed sleep, but, as it happened it just enhanced this spaced out, other worldly feeling that I was in. “Just don’t doze off” I repeated over and over again.
I was badly underdressed. I was soaking wet. I was shivering. But underneath it all, my core [me] I felt strangely fine. I was even happy.
At 4am our group of 3 stopped in a little lay-by, ducking our heads to the heavy rain. My friend explained to me:
“‘Type 1’ fun is just fun. Pure and simple.
‘Type 2′ fun’ is not good at the time, but when you look back on it, you realise it was really a good time.”
“And Type 3?”
“Type 3 is just not fun at all.”
I eventually finished at 6am. Exactly 24 hours after I started.
That was really hard. I refrain from mentioning their names, but the 2 guys from my club pulled me through.
I was badly ill equipped – and will now go out and buy a waterproof that actually works. Ditto a front light.
In keeping with my MS diet, I had eaten: 3 malt loaves; 3 sets of baked beans with various accoutrements; a vegetarian cooked breakfast; 3 bananas; 5 coffees; 3 cans of coke; a packet of jelly babies; 5 home made cookies; a bowl of porridge; 2 bowls of soup; 2 sponge cakes and custard; 3 hot cross buns; some dried dates; and a packet of sliced chicken. I weighed myself after the ride – 73kg. 6 weeks ago I was 80. What does this mean for who I was… and who I am now?