Can you cycle with MS?

I like cycling.

At the start of this year I lined myself up to enter the Paris-Brest-Paris [PBP] ride – a 90 hour cycle-a-thon, one of the most revered long distance cycle events in the calendar.

In any given week I’m usually out on my bike for about 15 hours. So what does this diagnosis mean for me, and for my planned PBP ride?

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 Audax this Saturday,” I said.

“Sounds excessive,” was the reply.

I searched the internet. Advice seems to be MS patients should aim to do 3 to 5 half hour sessions of moderate exercise every week. But this should vary with capability and fitness.  My cyclo-commute is currently an hour each way, 5 days a week.

There are 2 issues and concerns for me. Firstly, is one of immediate tolerance. Can I actually keep cycling through whatever symptoms I’m suffering; secondly, long term damage. Is being out on my bike doing me harm – or worsening my condition in any way?

Immediate tolerance is something I can probably answer for myself. I can either cope with it – or I can’t. My current symptoms of foot and leg pain I’m assured are not going to be exacerbated by exercise (when I say “I’m assured” – I haven’t actually been “assured”, this is just what I’ve been told).  But, at the moment, the flow of being out on my bike is the only thing that I’ve found which takes my mind off the pins and needles.  The absence of any leg strength is depressing and exhausting – but I’ve resolved that whenever I come to a hill to use the granny gear and gently ascend at walking pace as commuters young and old slowly overtake. Harder to cope with are my vision issues; and MS-related exhaustion, which arise suddenly and without warning. These are not only a “ride-ender” but also wipes me out for days afterwards with all the impacts on family and professional life. I’m going to blog separately on these in my ride reports – but, if anything is, I think it’ll be these that are the show-stoppers.

Long term damage is harder to resolve. And I’m just going to keep on asking the question of the experts, doctors and anyone who knows more than me. Is fatigue just being tired? Or is it worsening my long term chances? A day in bed is worth it for a weekend of cycling; but increased likelihood of disability is not. That you need rest to recvoer from illness is a given – but how deep into the “red” can you go? A fast 30min sprint, or a slow 12 hour touring ride? Or neither? And, wrapping around this whole issue, is the psychological benefit of being happy something that offsets the potential physical stresses? I don’t think I’m yet ready to concede what has been my passion for over 20 years.

My love of cycling is love of being free. Love of being outdoors and of long descents, and of tailwind speed. But it is also love of the battle. The test. The hair-pinning climbs and horizontal rain. The coffee stop when you were too tired to carry on, or the sudden sea view after 2 hours of ascent. Should these things stop now?

I’ve been told that some elements of coming to terms with an MS diagnosis are akin to mourning (I guess a “selfish” mourning for a lost future that you now need to change?).  I feel as though I’ve absorbed all this new news with surprising ease (but this might well be a failure to actually fully realise it all). And then there are moments which trigger a disproportionate emotional response: I absorbed the need for a new, fat-free diet quite calmly – but then suddenly felt like tears when I saw the “free ice-cream” voucher than I’d been given for Christmas. I talked to my son about a potential holiday to America, then welled up when he suggested sharing a milkshake at an American Diner.

What am I ready to give up? And what can I cling on to?

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