Can you cycle with MS? Versus MS?

I have asked the same question of every healthcare professional that I seen since diagnosis:

Will cycling in any way worsen my MS condition?

And the answer has always been “no”.

As I get back onto my bike, and wobble slightly with weakness, I repeat this to myself.

“No – it will not”.

In any given week, I’m usually out on my bike for about 15 hours.

The first advice, offered to me within 10 seconds of my diagnosis, was “of course you can keep cycling, just take it a bit easier.”

“I commute to work by bike,” I said.

“That should be fine – just go easy if you’re feeling tired.”

“I’m planning to ride a 200km ride this Saturday,” I said.

“Sounds excessive,” was the reply.

I search the internet. Advice seems to be MS patients should aim to do 3 to 5 half hour sessions of moderate exercise every week (which aligns to advice given to the rest of the population), but that this should vary with capability and fitness.  My cyclo-commute is currently one hour each way, 5 days a week.

I wait for the much-heralded appointment letter to arrive but burn with impatience. I hate the feeling that I sit passively as my MS is left to establish a foothold.

 

March 2015

Another fortnight has passed and the next pharmaceutical to be introduced to my system has been a pill called “Gabapentine”. On balance, this does seem to have reduced the throbbing numbness in my legs and feet. The incessant pins and needles that I’d had for almost a month have improved from pain to mild discomfort. It feels as though I can walk again without having to adopt hobbling pigeon-steps and suddenly this whole bout feels much more manageable. Numbness, hypersensitivity and the occasion spasm, in my thighs, remain, but these are bearable.

My main concern has become a blurry distortion to my vision, which I initially encountered on my bike, but now seems to have crept into my daily life. Several times this week I’ve been struggling to focus my eyes at work. Reading the packaging of my Gabapentine tablets, there is the possibility that these latest issues might be a side-effect of my latest drug (the list of potential side-effects includes pretty much every medical condition you could think of).

5 weeks post-diagnosis, coinciding with some early season, stunning, sunny weather in Bristol, I reached something of a breaking point. I can’t sit and wait anymore – I needed to escape and needed to get back on my bike.

I couldn’t bear being locked-in anymore.

First off, I rode out to a nearby lake to meet some of the riders from my club. The route afforded amazing views across Bristol, with hot air balloons in the sky. Beautiful – and as good as it gets.

On the way back from that ride, the fog around my leg muscles suddenly seemed to dissipate. It had been there for weeks – but then just disappeared in a matter of seconds.  I can pinpoint the exact moment it happened. The sensation almost boosted me forwards – as if muscles that had forgotten how to work kicked back in. Goodness knows the neurological reason for this dramatic change, or an apt word for my reaction… maybe “elated” or “exhilarated”. I had a spurt of excited adrenalin that would keep me awake that night. For the first time since diagnosis I felt good again – as if something inside me had been unlocked and I was working anew.

I was wary the next day and careful not to overdo it. If that was the end of this bout, I had coped.

48 hours later, of course, I woke up and the pins and needles were back more ferociously that ever. My whole legs felt dead again. If I was still trying to work out a new, fledging relationship with my ‘MS’, this now felt very much like a fight. And the opening bell had just been rung.

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In the opening scenes of the film Batman Begins, Bruce Wayne is in a muddy jail and is being confronted by an increasing number of ‘bad guys’ that he has been locked up with. He battles to fight them off until the prison guards drag him away, “for protection.”

Furiously kicking out at his captors, he growls, “I don’t need protection.”

“Not for you,” a guard replies. “For them.”

I want MS to regret being locked up with me.

 

I resolved to get back into the routine of a daily cycle to work. With each push of my pedals I envisaged forcing my MS away – down and out through my feet. Each movement of my legs was another blow landed.

On Day 1, when I arrived at work, I felt too pumped up with frustration to stop – the short fight of a 30 minute cycle hadn’t even touched the sides. Instead, I  carried on through the town centre and sped up a local hill called ‘Clarken Combe’. Then my legs did begin to burn and give way, but I carried on pushing, and wheezing, to the top. At the summit, my ride came to and end. My heart was racing.  I felt both euphoric and very bad, but no mid-point compromise between the two. Maybe it equated to a bloodied, but victorious, pub-brawler the moment the police cars roll up.

My legs felt no worse for the rest of the day. And neither did the issue with my eyes. My natural urge was to go out and fight MS again; so, after work, I rode up Clarken Combe a second time and, with a tailwind behind me, it was probably the fastest hill climb I’ve ever done.

Since diagnosis, I had been looking for a way of dealing with my MS. This felt like it.

MS, you’re going to regret being locked up with me. For the rest of your life.

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One of the first things I did when I first got back from the hospital, was to buy Roy Swank’s MS ‘Bible’ – “The MS Diet Book”. This will be familiar to many MS patients and the ‘bible’ analogy seems an apt one, as its devotees are almost religious with their fervour, as are its detractors.

Swank writes [ed], “It is difficult for people who have been active all their lives to slow down. To have been driven all one’s life by some poorly understood mechanism in the one’s body, and then be asked to cut the speed by a half or two thirds is asking a great deal. At times the patient is like an automobile with less than one gallon of gasoline in the tank. He or she can travel fast for but a few miles, then stutter and stop Pace yourself. Don’t rush. Listen to your body and very carefully monitor and control your desires.”

Much of his book that describes some of the issues, especially the early symptoms of MS, feels as though it has been written personally just for me.

This is a new world for me, and I know that I will need to learn. And to adapt.

Maybe fighting MS is like having a fist-fight with the sea. I have always liked the urban myth  about the Geordie dock worker who, to prove his toughness, used to try and brawl with 200 tonne frigates as they rolled down the launching ramp into the sea.

I need to realise that there are days when I need to lie in wait. Pretend to be swaying on the ropes – so I can better beat my foe tomorrow. Pulling back from what I’ve always done, what I do, is going to be the hardest thing for me to do.

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I hope you enjoyed reading this post. If you did, I’d really appreciate it if you bought a copy of my book, CyclingWithMS. All profits go to the “MS Society”. It’s available from Amazon, the e-version for barely the cost of a coffee!: https://www.amazon.co.uk/dp/B07HZ2MW97

If you did not enjoy reading this post, I’d really appreciate it if you bought a copy of my book, CyclingWithMS. All profits go to the “MS Society”. Details are above.

 Many thanks