The Sense of an Ending
For several months last year the only mast cell stabiliser that is effective for mastocytosis was out of production and I had a reminder of how bad my condition could be. Instantly returning me to the time when I had been too unwell to run. But back then my running had been taken away gradually and not suddenly, all at once. Back on the ketotifen the condition settled and I felt good again. I went on to have my best ever cross country season, gaining my first Scotland East vest and finishing in the top 20 at the Scottish National Cross Country Championships.
But in the back of my mind a faceless clock had started ticking, counting down the time I had left to run. I’ve read every journal article on mastocytosis I can get my hands on - I work in a university so that’s quite a lot - but ‘little is known about specific prognostic factors predicting the outcome in individual patients’.1 There is no way to predict how long I have before the disease progresses, it could be decades, it could be days. Patients are advised to avoid mast cell degranulating triggers, including intense exercise. Consequently there is nothing on what happens if you do exercise intensely.
Once I was back on the ketotifen I did two things:
- Bury my head in the sand.
- Train and race when I shouldn’t have.
In the week leading up to the Smokies 10M I felt pretty awful. I was running out of glycogen on all my morning runs and was way off my typical rep times at training. I was flushing (a symptom of mast cell degranulation) multiple times a day and had been very sick after my weekly methotrexate injection (a side effect that had previously settled). At one training session I got dropped on the warm up.
So I went to the race.
Obviously.
During the warm up I couldn’t breathe properly and during the race it only got worse. From mile 6 I felt absolutely horrendous and started slowing considerably. By the end I was close to tears. I was wheezing on the warm down at 9 minute mile pace. I hung around for the prize giving in the hope that I would start to feel better. In desperation I even ate the bread from a cheese sandwich (I’m a vegan - and don’t eat wheat) to see if it was a blood sugar issue. It wasn’t. I felt weak, I was breathing too fast, my pulse was racing. Eventually I rang NHS 24. I was advised to go to the infirmary and from there was taken by ambulance to Ninewells. I had an infection which had made the mast cell condition worse.
Why did I race then? See above re location of head in relation to sand.
The more incomprehensible thing was what I did the weekend after spending half the week in hospital. I ran back-to-back long runs on the treadmill. I told myself it was fine because it was ‘easy’ and it wasn’t like running off into the wilderness by myself… It hadn’t helped that all the hospital doctors had given me different advice on when to restart running (understandably as there’s no scientific evidence or guidance beyond ‘don’t do it’).
I half knew running back-to-back long runs was a really stupid thing to do, but it was the reaction of my coach when he saw my training diary that stopped me short.
So I made an appointment to see an ultra-running sports doctor because it’s pretty hard to run when your head is buried in the sand, and if I was going to listen to anyone it was a man who had run from John O’ Groats to Merzouga.
The problem, well part of it, is that all athletes have to push themselves out of their comfort zone in training in order to get faster. But there is a liminal space between pushing yourself hard enough to improve and pushing yourself too much, and that space is finer, harder to control when you have mastocytosis. When there is a ticking clock in the back of your mind, counting down but with no numbers visible it’s easy to push out of ‘hard enough’ and into ‘too much’. Racing and training when I should not have was down to denial. The back-to-back long runs were down to that clock, the fear of losing running forever. Sometimes when I run on trails it feels like my body and mind are united together and with the Earth. Everything is illuminated. Everything is awesome. There is nothing in the world to compare with those days when running feels like flying.
Taking away my running would be like tearing the wings off a bird.
I needed someone to help me sort myself out, to stop the blind running at oblivion driven by my fear of losing everything. So I made an appointment with Dr Andrew Murray.
He helped bring things back into focus. The long term goal is to stay heathy enough to run, if possible, for the rest of my life. The short term goal is to perform to the best of my ability and talent whilst I still can. I may have to quit racing in the future but that is preferable to losing running altogether. Short term goals are not as important as the long term goal: no race, no training session is worth losing running for. And focusing on the immediate can also destroy the short term goals: pushing in the week leading up to the Smokies 10, and the race itself meant I was unable to go to Birmingham with the Scotland East team for the Inter Counties, which was hugely disappointing. It’s an opportunity I may never have again.
Tick follows tock.
Only it doesn’t. Listen to a clock and say in your mind tick, tock, tick, tock, tock, tick. They are interchangeable, separated only by our need for narrative, for the sense of an ending - and of course a beginning or ‘genesis’.
In an odd way, I feel like I now have ‘permission’ to pull up when I’m not okay, to cut my losses to save the long term goal. I have to trust my judgement as no one else knows how I feel.
Dr Murray also spurred me to take steps to stay as safe as I can whilst not restricting what I do. Well, except racing in the Arctic or Sahara, he thought that would be a bad idea. So I’ve signed up to a Medic Alert service and bought a couple of ID bands (with a 24hr emergency phone line). I’m making sure there is someone at every race with my full medical details and I’m going to stop being complacent about carrying Epipens.
The evening after seeing Dr Murray I went out for a dusk run on West Sands and The Old Course and it was wonderful. It felt like flying again and I could sense the endless possibilities of ‘tock’.
1. ‘Tick is a humble genesis, tock a feeble apocalypse; and tick-tock is in any case not much of a plot. We need much larger ones and much more complicated ones if we persist in finding 'what will suffice.' And what happens if the organization is much more complex than tick-tock?’ Frank Kermode, The Sense of an Ending.
2. ‘The course and prognosis in these patients are variable; in indolent variants, the clinical course remains stable over years or even decades. In advanced mastocytosis, the prognosis is less favorable despite novel drugs counteracting growth of neoplastic mast cells. Although WHO criteria are clearly separating prognostic subsets of mastocytosis, little is known about specific prognostic factors predicting the outcome in individual patients’ Sperr, Wolfgang R, and Peter Valent. "Diagnosis, progression patterns and prognostication in mastocytosis." Expert Review of Hematology 5.3 (2012): 261+.
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