Cycling with MS, Jeff Goldblum and 10 mile time trials

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Cycling with MS

I have asked the same question of every healthcare professional I have met since diagnosis – will cycling in any way worsen my MS condition? And the answer has always been “no”.

I find myself repeating this to myself from time to time.

“No – it will not”.

I’d set off on my downhill ride to work and some heavy rain had set in. I hadn’t felt right from the moment I woke up – and my body felt badly out of kilter. Barely a couple of miles from home and I’d had to pull off the road. I had a complete lack of strength in my legs, my arms muscles were buzzing and it felt as though my bike was hardly moving. But I couldn’t stop for long because of the rain – my hands were starting to get numb – so I pointed onwards and carried on.

I had built up some ‘time-off in lieu’ with work so had planned a cycle ride that morning – but now it wasn’t going to happen. I badly felt under the weather all day and went to bed at 8pm.

Then the next day I woke with a start at 4am feeling top of the world. Eventually I gave up trying to go back to sleep, crept out of the house so as not to wake the family and wheeled out my bike for a ride at sunrise – a day late.

I felt strong and rode fast through the clear, bright morning on car-free roads. Wonderful. And confusing.

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Jeff Goldblum

When I was a young boy I remember being fascinated with the Guiness World of Records. Of course, the athletic exploits of the likes of Carl Lewis or Bob Beamer were awesome – but it was the human curiosities that led to my real wonderment: the fattest man alive; the lady that had sneezed continuously for 30 years; the man with the long fingernails; or the giant hands. The ‘Oldest Man Alive’. Last week I was out on my bike and I started timing how often I was needed to stop and wee. About every 40 minutes. It was so reliable that one-time I thought I’d trick the symptom and stop in anticipation – but the tactic failed. I wondered what weird twist on the “normal” my body would become – what it was morphing into that I didn’t recognise.

Over this last fortnight my MS condition has kept introducing new unnerving symptoms. I briefly lost partial use of my right hand. Three times I lost my sense of balance for a couple of minutes. The skin on my legs started going bright pink after every warm shower. And I experienced what they call “an MS hug”. I can only describe this as the feeling that cold water was trickling down my back (I actually thought I’d brushed against something wet) – but then the sensation spread around my waist and I realised that it was just another MS-oddity.

I recalled the classic sci-fi ‘horror’ film, “The Fly”, in which Jeff Goldblum (for reasons best left unexplained!) slowly transforms into the insect. The fear that viewers seemed to empathise with was the morbid fascination with which he slowly witnesses the ghastly metamorphosis that was taking place. A healthy man watching himself slowly leaving his humanity. I poke fun at myself and make this cinematic reference light heartedly – but it has been a disconcerting couple of weeks for me.

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10 mile time-trials

No long bike races this year. That’s the remit. Elevated body temperatures are causing me vision issues; and the bounds of my revised capacity for prolonged exertion remain something I do not want to push too hard.

But 10 mile time trials? A 25 minute race against the clock? I thought I’d try the annual club event this weekend. I anticipated being slow, a bit blurry during and probably excessively exhausted afterwards. I was paranoid I’d need to stop halfway and go to the loo….

As it happens I felt weirdly overweight (despite the issues I’ve been having keeping weight on); wheezy; and unfit. But then I rode in on my road bike at under 25minutes which (narrowly) is a new PB for me.

No one cares or notices my times apart from me – but I was pleased despite being nearer to last that to first. My vision went a bit blurry in the car park afterwards – but, here I am, with MS; still very much alive. Still out on my bike.

Today score was: Cyclist 1; MS 0. A good day.

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If life’s a party, please can I change the music?

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A patient walks into the doctors.

“Tell it to me straight, Doc,” he says. “No sugar coating.”

The doctor proceeds to tell him the grave seriousness of his condition.

Struggling to digest this latest news, the patient laments, “What I meant was: ‘convince me you’re going to tell the truth, but then just tell me what I want to hear….'”

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[“THE TRUTH?” Jack Nicholson barks, “YOU CAN’T HANDLE THE TRUTH!”]

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This week I had my first appointment with a neurological consultant – and we talked about where I am and what the next steps should be.

We discussed my symptoms and he explained the results of my MRI scans.

A lesion (or scar) on the brain or spinal cord, coupled with ‘MS symptoms’, would be enough to trigger an MS diagnosis. Scars on the spinal cord, opposed to the brain, tend (“tend”, but not always) to be warning signs of a more aggressive form of the condition. Their number, and size, are (very) rough barometers of the extent to which the condition has taken hold.

I have 6 lesions on my spinal cord, and 3 in my brain.

No areas of the MS condition are black and white… but, coupled with my symptoms, this is decidedly not good news – and enough to categorise my condition as being at the more aggressive end of the MS spectrum.

So it’s now all about next steps. Drug decisions and new chemical names: Lemtrada; Tysabri; or Tecfidera. Blood transfusions and time off work. Stronger drugs weighed up against stronger side effects. Some so strong they could kill you. So strong that their initial doses change your immune system for good.

The consultant’s advice was to get started on a drug program as soon as possible… but then followed that up with the news that my next follow up appointment, drug decision and, eventually, prescription, would not be for another month or so. These extra days are just drips in time, but are frustrating hours and minutes passing with the impatience of some one keen to get started.

The drugs that ultimately (at least, hopefully) I will be taking did not exist 8 years ago. A decade ago I might well have been in a wheelchair within 2-5 years. Now? I might still be. Whatever drugs I end up taking need to do their work.

I asked the consultant what else I could do. Whether I should maintain the MS diet that I’m pursuing.

He paused for awhile and gave me a considered response. “I advise that you try as hard as you can to be happy. Do not let your condition run your life.”

And cycling?

“Happiness, you’ll find, is the best medicine.”

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I arrived and left my appointment in my cycling gear – having ridden from work. But I also had to pigeon-step in and out of the hospital as I struggled with that most basic of functions.

On my commute home I suffered a rear wheel puncture. “How annoying”, I thought.

4/5/15 Brevet Cymru 400km

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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.

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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 ride

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.

https://www.strava.com/activities/297150224

 

The finish

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?