If you’ll forgive the pun, I suppose I had a good run of it.
I experienced my first MS symptoms in 2005, was eventually diagnosed in 2009 and ran my first marathon in 2015. Between 2015 and April 2019, I ran six marathons.
I’ve never been much of a runner, so it was as much of a surprise to me as it was to anyone that I became “the patient that runs” to my neurologist. Running has never been easy for me, but my MS symptoms included weakness on my left-hand side, widespread pins and needles and numbness and fatigue.
My running started out as an act of defiance, a small gesture of independence against a progressive disease that I could not control. But the more I ran, the more I wanted to run. My social circle became other runners and I began to run further and further, wondering if my body would be able to withstand the 500 miles of training you need to do in order to prepare yourself for the small matter of the 26.2 miles at the end.
It turns out that it could.
Over the four-year period of my marathon running, my wife and I raised something like £40,000 for MS charities and, on my best day, I managed to pull myself around a marathon in under four hours, beating my previous personal best by more than twenty minutes.
I knew I was lucky, of course. Although everyone experiences MS differently, I knew that it was unusual to be able to do this much running; I knew that the clock was probably ticking and that my time running like this might be limited. MS certainly has a way of keeping you on your toes.
A race against time
Sure enough, over lockdown in 2020, my time ran out. Without ever having a relapse, my condition began to steadily worsen. I was weaker and I couldn’t pick up my left leg or drive it through properly. The orthotics that kept me on the road began not to work as well and I was falling over a lot. I was hurting my knees and wrists and picking up other injuries because of the compromises my body was making to keep me running.
Then my diagnosis was shifted to secondary-progressive. Reluctantly, I began to slow down and to wind my mileage back in. The idea of running another marathon disappeared. Heck, even a half marathon seemed unlikely. My life was fundamentally changing and one of the supporting pillars of my concept of myself was collapsing around me.
Whenever people have told me how lucky I was to be running, I always told myself that if the day ever came when I couldn’t run, I’d simply shift my focus and do something else instead. Why spend your time worrying about what you can’t do, or on what you might have lost? Why not focus on what you can do instead? Why wallow in the negative?
Easy to say when you can run marathons, no?
Coming to terms with my new multiple sclerosis symptoms
Well, now I was being tested. I’d defined myself as a runner, and now my ability to run was disappearing. Never mind running, my mobility as a whole was in decline as my muscles stiffened up; I walk with a noticeable limp and increasingly need to self-catheterise to manage my bladder issues. Nearly twenty years after my first symptoms and four years after running my last marathon, here I now was applying for a disabled railcard and asking for accessible camping at a festival I’ll be attending in the summer. Was I now disabled?
Well, increasingly, yes. I suppose it happens to most people eventually, but it’s a strange thing to suddenly confront the fallibility of your own body and to begin to change the way you see yourself. MS has a knack of challenging you to adapt.
Life after a secondary-progressive diagnosis
I still run, albeit slowly, and I’m now studying for my next qualification as a running coach. I might not be running any more marathons or entering any races, but I can stay still involved with the sport if I want to (you know what they say… those who can, do and those that can’t coach!). I’ve also started trying new things that keep me active without being quite so unforgiving on my body. I’ve discovered that I enjoy cold water swimming in a lake in my favourite park; I’ve begun to learn how to row.
Most of all, I’ve discovered the power of asking people for help. I’ve chatted to my coaches at the rowing club about my worries over a loss of strength and balance and was delighted to find that they were receptive and full of suggestions about how they could support me.
My view of my own body is changing, but I’m learning that asking for help isn’t a sign of weakness. I know my MS is likely to continue to progress and there’s very little I can do to control that. To pretend otherwise seems like a total waste of energy. Whatever is coming, I have to believe that future-me has got me covered. After years of not much disease progression, my world is suddenly changing fast, but it seems that I am still one of those annoyingly positive people who insist on looking forwards rather than backwards. I’m grateful for what I’ve got, and I try and spend as little time as possible being sad about the things I might have lost. I’m adapting.
Frankly, what other real choice do we have?
Besides, if the last marathon of my running career turns out to be the Vienna City Marathon in 2019, then how could I possibly top the memory of escorting my wife around a beautiful city to her personal best time, finishing at the very same building where we married?
MS can’t take that away from me.
My name is Tim and, after 4 years in limboland, I was diagnosed with MS in 2009. It might sound strange, but I reckon that I’ve actually got that diagnosis to thank for discovering a strength and determination that I didn’t know I had.
My diagnosis was moved in 2020 to be secondary-progressive. I used to run marathons, although not so much these days. I do still run (after a fashion), but I also cold water swim and I'm now learning to row. Well, it wouldn't do to just stop moving altogether, would it?