Reactions to a diagnosis (in my case of MS) are widely described in literature as following similar patterns to a bereavement:
Shock – perhaps confusion or denial;
But then acceptance.
One of the (several) emotional conversations I had over the last few weeks was with a fellow patient who had symptoms extremely similar to mine. He was the same age (almost to the day) – and was even (slightly spookily) of similar appearance. But he had been diagnosed much earlier than me – some 3 years previously.
In the last few months, triggered by symptoms very similar to what I had been experiencing, he had stopped full-time work; and “retired” from his sport (where he had reached a decent level). He now used a walking-aid when his symptoms were at their worst.
He was quite incredibly calm and phlegmatic about these concessions (or, at least, described himself this way). I tried to articulate the amount of fight I still felt I had – but he was philosophical about this as well. His story was that he had been ‘furiously angry’ for 2-3 years after his initial diagnosis (I think he had taken out a lot of that anger playing ice hockey which was perhaps why he’d got so good at it!), and his marriage had fallen apart. But he believed that he was now calmer and happier; growing with his condition – living with it, rather than fighting against it.
I still have not accepted the changes that MS is bringing, will bring, to my life. It seriously agitates me. I wonder if, in time, this will calm, and I too will reach my own acceptance of sorts. But I wonder, too, if this is really what I want – or part of what I want to fight.
As I re-assess my cycling, there are different levels of concern. Firstly, there is immediate tolerance: can I keep cycling through whatever symptoms I’m suffering? Secondly, there is the worry of long term damage: is being out on my bike worsening my long-term prognosis 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 these incessant 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 smallest gears 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 stop me on my bike but also seem to wipe me out for days afterwards with all the impacts on family and professional life.
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 cycling-related 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. I understand that you need rest to recover from illness – 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 – does this alone offsets all those 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 also read that some elements of coming to terms with an MS diagnosis could be compared to a ‘mourning’ (I guess a selfish mourning for a lost future that you now need to change?) On one hand, 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) – but then, on the other, there are moments which trigger a disproportionate emotional response.
What am I ready to give up? And what can I cling on to?