Sophie M
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Running the Great Manchester Run... with mastocytosis

Sophie M
Posted by
14 Jun 2013

On the surface, in 2011, I was the fittest I had ever been and running faster than I ever had but underneath there was something wrong. Half the time I felt great, half the time I felt grotty. In addition to a general sense of malaise there were periods of crisis: I would end up in A&E with agonising stomach pains and/or severe hypotension. My list of symptoms (bone & muscle pain, stomach aches, vomiting, dizziness, sinusitis, fatigue, osteopenia, low blood sugar, weight loss, suddenly swollen hands and feet, wheezing…) left the doctors nonplussed and I was diagnosed with everything from chronic fatigue to gastritis. These crises would pass though and I would pick up the reins and carry on. Then one didn’t pass and within a month I went from running the Berlin Marathon to struggling to walk 200m in one go. Before long I needed a walking stick to stop myself falling over. Fortunately I have an excellent GP who never gave up sending me to specialists and finally a skin biopsy revealed Mastocytosis.

The doctor who gave me this news handed me an Internet print out. Scanning it I noticed the list of ‘triggers’ and questioned him about whether the fact that exercise was a trigger would mean I couldn’t run. He said no running. I pushed him on this and he said I might one day be able to jog again but racing would be outright dangerous. He was adamant on this. I left the clinic with tears carving mascara-stained streaks down my cheeks.

I started researching the disease myself and discovered that in some cases it can progress into Mast Cell Leukaemia. I looked up MCL and was horrified to discover just how short the life expectancy was. I had thought, naively, that most cancers could be treated, not necessarily cured, but at least treated. I went back to researching Mastocytosis and joined the UK support group. It’s a rare disease so I felt that it was best to join forces with the other unfortunates! Within the group was a runner. That simple piece of information was enough to spur me on. I read every medical paper on Mastocytosis I could find, got on a cocktail of antihistamines and mast cell stabilisers and began to go jogging…

Those first jogs were agonising: agonisingly slow and agonisingly painful. Jog/walking caused my blood pressure to plummet and my airways to swell. I tried jogging in the forest – an old favourite – but was soon reduced to tears of frustration and anger. So I went back to the drawing board to look at what I could do to help my body cope with exercise (i.e. not trigger mast cell degranulation). Over a few months I made a number of changes, I cut out added sugar (including alcohol) and reduced the number of high histamine foods I was eating. My fruit and veg intake more than doubled.

I landed on my feet when I was referred to Dr Dawe at Ninewells who altered my medication and put me on a course of UVA1 (three sessions of up to 40 minutes each week). Initially I found this really tough going as my mast cells responded by tipping out their contents into my blood and surrounding tissues. Five weeks in I was thinking about giving up! Eventually things started to improve and I began going to the gym. I reckoned that building up muscle would mean I could run further and faster before my mast cells got upset. I then added weight lifting as all the heparin released from mast cell degranulation had damaged my bones and weight lifting can increase bone density. Very, very slowly I began to run again. Sometimes it was fine, sometimes it wasn’t. The long, cold winter didn’t help, as coming inside from the cold would trigger degranulation and hives over my entire body. I have scars from itching so much.

Slowly I went from running to training and wondering about the possibility of racing again. It was then I saw that Vodafone JustText Giving were holding a competition to run all of the Great Runs (they would sort the entries, travel and accommodation) for a charity of your choice. Writing my story was hard, choosing my charity was not. I remembered all too clearly my distress on learning the short, short life expectancy of MCL and knew I wanted to do anything I could to boost research. I was on the train to the airport (my family live abroad) when I picked up an email saying that I’d won. I was so far beyond happy! Over the next two weeks, first in Switzerland (my sister) and then Spain (my parents), I began incorporating fartlek training – Swedish for ‘speed play’ – into a more endurance-based routine. I changed my flight home from Spain to land at Manchester, and my first challenge: the Great Manchester 10K.

Meeting Haile Selassie at the Great Manchester Run

The experience at Manchester – meeting running heroes and celebrities at the start – was awesome and I managed to run the race in 41 minutes 31 seconds. The large number of Leukaemia and Lymphoma Research shirts at the start gave me a real boost!

I’m now back to training with my old running group – through Fife AC – and have entered some local races. I was amazed to come second first time out and even more astonished when I followed this up with two wins! Things are going really well but I have to be careful. After Fife AC’s Hill of Tarvit race I was pretty unwell: awake through the night with pain and nausea, desperately trying to keep my fluid levels up as my blood pressure slumped. Even though I’m doing quite well I have to be careful: running the Great Runs for Leukaemia and Lymphoma Research carries with it more responsibility than my club runs. I can’t afford to not finish or push so hard I make myself ill. But it’s a challenge I’m really excited about. I hope that I can raise awareness of mastocytosis (so no one else gets their diagnosis with an Internet print out!) and raise money for Leukaemia and Lymphoma Research so that one day more people will have more options and more hope.

Please help if you can:

You can donate by mobile: text TINY81 and your chosen amount of money (e.g. TINY81 £3) to 70070

Or visit my Just Giving page: Tiny Runner Just Giving

You can also read more about the Manchester 10K on my blog: Great Manchester 10K

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