90 days post Lemtrada. The body feels ahead of the mind

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3 months post-Lemtrada. Another “man-made” line in the sand – but significant because I’d always steeled myself for (what I’d been told) would be ~90 days of physical depletion after my treatment.

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It was mid-February last year when I had last walked painlessly and freely. At my worst, I could barely walk at all; at my best, there was a mechanical clunkiness that I struggled to articulate: the awareness that something felt a bit wrong… stiff, wobbling and robotic; with an ever-present undercurrent of pins and needles.

Then, last Sunday, as my boys ran (pretty aimlessly!) around a rugby field, it dawned on me that some sort of spring had returned to my step. I equate the sensation with the looseness brought on by a particularly successful physio-visit or yoga session. I don’t know when exactly it happened… but I had to consciously search to find only the smallest hint of pins and needles. I found that I could “stride” again rather than just shuffle.

And I’ve been back on my bike. I’ve been back, riding with friends, who I can (just about!) keep up with – thinking how much fun all this is, and how much I’d miss it if it went away. The body is creaking as I remind it what cycling is about: aches here and there; my old arthritic knee; troublesome sciatica; and no “kick” in my legs – but these are obstacles I understand and have been long frustrated by. Although there’s no short-cut around them, they do not carry with them the more sinister, hidden, threat of MS.

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Getting back into my cycling isn’t proving that easy. Nor, perhaps, should it be. I’ve “bonked” a few times already (the term cyclist’s use to describe that unwanted sensation when suddenly the body can cycle no more – an absolute crash in energy levels that is near-insurmountable); and have returned from shorter rides disconcerting late due to my average speed. Even my commute home is taking noticeably longer than I remember. But I do want to get back to being ‘capable’ and free. I don’t want to get used to a new norm.

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In the book, “Life of Pi”, ‘Pi’ describes his family’s experiences of owning an Indian zoo in the seventies. On the rare occasion that an animal would escape its captivity, the most common result was not that the animal would run amok; nor make a bee-line for the freedoms of the wilderness; instead, after a few tentative circles of new territory, it would typically return to its cage, where it felt safe, in familiar surrounds, and would await its next meal.

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My latest worry is about the ‘fogginess’ of mind that I’ve been experiencing the last few weeks. I gather that this is not unfamiliar post-Lemtrada, so I keep my fingers crossed that it will pass. At the moment, I can still see the funny side: discussing deadlines with a colleague, I spent at least 5 minutes thinking that we were already in March; I enjoyed a dinner party with my wife, but realised afterwards that I couldn’t remember a single person’s name round the table; and I have been forgetting not only names of prominent celebrities and actors, but of old friends too (let alone the names of their children or partners). Maybe this is all just me growing old… maybe not. I do see on the internet that many people in my position have similar concerns, but, coupled with the occasional bout of disabling vertigo, I wonder how much longer I can retain the mask of competent employee…

<<always remember not to let MS be your excuse for everything. It is no less “you” than the scar on your cheek, colour of your hair or love for your children>>

 

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Building blocks and curve balls

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2016.

I’ve always quite liked the “clean slate” feeling of a new calendar.

It represents  possibilities and potential: there’s all that empty room for plans and dreams that haven’t yet been squeezed out by the passage of time.

When I was a young backpacker I remember getting the same buzz of excitement as I stood, starry-eyed, in Paris’s Gare du Nord. Rather than the humdrum names of Slough, Daventry, Swindon or Barnstaple, the Departure Board was crammed full of new adventures: Barcelona and Brussels; St Petersburg or Bucharest; Budapest and Vienna.

It was as if all boundaries had been removed.

I know that there are textbooks that’ll tell you that January 1st is but “a Western construct” – representing nothing more than a arbitrary line in the sand  (why wasn’t the line drawn at midnight on the shortest day to tally with the spinning of the planets and stars?) – but I quite like it the way it is. What couldn’t be done last year, becomes possible again. Things can be rectified; or re-built again.

Over Yuletide, my recovery from Lemtrada treatment was moving in the right direction. Bouts of vertigo ceased being daily. Some force deep inside me, my internal engine, began to give off little sparks again – trying to catch alight. I slept 9 hours a night and slowly turned pedals on my bike. There were  a couple of unwanted moments when my balance disappeared – in a waiting room; in a restaurant; on a plane – but these were the exceptions, not the rule.

Since New Year, I’ve found myself glancing at lists of cycling events – like exotic destinations on that departure board: the Alps and Snowdonia; audaxes and day-tours.

At the moment though, these have to remain as mere sparks: they are always immediately followed by a reflection of my ongoing physical weaknesses  and tiredness of fight.

(Gently gently.)

Of course, it is the element of surprise that makes a curve ball such a good weapon:

Last Sunday, I donned my winter jacket, waterproof gloves, winter leggings and snood and headed out for my first long(ish) ride since my treatment.

I wondered what my body held in store for me.

A couple of hours later, as I rode on the A36, an on-coming motorist, who cannot have seen me, accelerated furiously into my lane as he overtook at  (I’d guess) 50mph+ in wet conditions.

There was simply no room on the road for both me and him – I was forced into the tall roadside kerb, which I momentarily scraped along before toppling over.

I wasn’t hurt, apart from a slightly sprained wrist and the indignity of a scratch of dirt up my left hand side but I’d suffered not only a front wheel blow-out, but a 2 inch slit in the tyre itself.

I tried, as best I could, to use the ripped inner tube  to fashion an “emergency tyre patch” which would get me to the nearest bike shop (early on a Sunday morning).

As a footnote, it’s almost exactly a year since the last time I was hit, head-on, by a motorist as she drove up the wrong side of the road in Bristol. I still await any compensation for my injuries and all the damage that was done. Pleading guilty in the subsequent court case, the driver was fined £120 and given  a suspended ban from driving.

As a further footnote, last year a speed camera captured me, very early in the morning, driving at 37mph along a deserted (straight and dry) Welsh road, designated as a 30, For this, I, too, was fined £120 and had 3 penalty points added to my license. 

I only just finished my ride. No endurance. No stamina.

Not yet.

But my struggle was not with MS – it was with poor conditioning and an absence of training.

Hard work. But if it wasn’t? Well…. everybody would be doing it wouldn’t they?

My first building block of 2016 – albeit a slightly wobbly one.