In early 2010 I was asked to write a blog about why I “train through pain”. I have been mulling over the request for some time… Why am I doing this? Many people have also asked me to share a little about my nerve disease and how it impacts me. I have been mulling that over too. The two requests are interlinked.
On my Wednesday blogs I spotlight charity fundraising. This year I am directing my charity fundraising to the CMTA STAR initiative to find a cure for Charcot Marie Tooth disease Type 1A – a progressive degenerative peripheral nerve disease which impacts 1 in 5000 people, including me. I thought I would publish my thoughts on “Why” and “Me and CMT” in one post, today.
What type of CMT do you have? CMT1A
When did you receive your CMT diagnosis? I think it was suspected my whole life as my mother had it, but I received a diagnosis in 2004 and a genetic confirmation in 2007.
If someone saw you on the street, would they know you had anything wrong with you? No. Sometimes it appears that I am limping, but that is probably it.
How do explain CMT to others? I like to tell people that my nerves don’t communicate with my muscles properly. The conduction of signals is slowed, or almost imperceptible. Therefore it takes more effort to achieve what a “normal” person does easily. I like to think of this as 4x more effort for the same result.
If you could describe your approach to living with CMT in three words or three key mantras, what would they be? Be positive, be accepting of yourself and your limits, but never stopping pushing boundaries.
What does the CMT STAR program mean to you? The hope that someday a cure or treatment will be found for the 1 in 5000 people who have CMT1A. The possibility that these people can live active, healthy and pain free lives without hindrance.
What if someone told you that you are healthy… Active… 100% fine…
But… They couldn’t guarantee that you would be like this forever…
Sure, we all live with the fact that we will get older, that as we age we may slow down and we will certainly change.
But… What if you learned that you had a genetic condition and that one day, some day, maybe, this condition could mean that even walking up a flight of stairs might be impossible?
In 2004 I was diagnosed with Charcot Marie Tooth disease – a genetic condition which means that my nerves don’t transmit signals to my muscles properly. The diminished nerve functioning would lead to progressive, degenerative muscle atrophy – from the periphery of the body (hands and feet) to the core. My future mobility was unknown.
Wow. I went to the doctor because my left foot hurt after walking a half marathon, and I wanted a solution to walk a full marathon. I walked away with a potentially life changing prognosis.
Once I received my diagnosis, I decided that I had to learn more, to understand the true meaning of having CMT. I joined a Yahoogroup, I went to a nutritionist. I did some reading. And then I put all of it away. The facts were overwhelming, the ways in which CMT could potentially manifest itself in me unknown. Leg braces, wheelchairs, breathing problems, hearing loss… But would that happen to me? I couldn’t process the uncertainties. I closed that book, put it on the shelf. And I tried to forget about it.
In 2006 we moved house. Suddenly I lived in my dream home in central London – the house is older than the Declaration of Independence, complete with 5 stories of spiral staircase. But the dream had an unintended consequence. I felt weak. My legs? Leaden. Frankenlegs. I felt like I was losing my ability to move. I was scared. Was CMT the reason why climbing stairs was becoming harder and harder?
I went back to the doctor. I decided to get a genetically confirmed diagnosis and to take the steps to more “actively manage” my CMT.
In 2007 I signed up for my first triathlon, and found a sports therapist to work with. I thought that becoming fit and strong would help my body to manage any longer term impacts of CMT – but I also knew that to become strong I would need to work with my body to stretch out, loosen up and eventually strengthen my tight and atrophying muscles. I found someone to help me – a sports therapist (who is also a triathlete) that I have been working with over three years to manage my training and CMT.
I completed my first sprint triathlon in 2007, walking the 5k portion, and did the same in 2008. But I found myself doing the minimum required to stay fit – because it was easy to “just get by”. I decided in 2009 that I needed to step up my game and set myself the goal of learning to run again so that I could become “a proper triathlete” and have a reason to keep training through the long winter months.
I hadn’t run since I was about 9… I had knees that dislocated a lot when I was younger. I was scared of hurting myself. Way back then, I became the slowest in the class. I hated doing sport. So I stopped. I didn’t think I could run anymore. And no one challenged me to think otherwise. In 2007 they put a name on my knee problems too – Ehlers Danlos or benign hypermobility syndrome.
In 2009, when I decided to revisit my goals, something also crept into the back of my mind. Why couldn’t I run? Maybe running, like swimming and cycling, would help me to become stronger. Maybe running would help me to have a stronger base so that if my nerves stopped working I would decline from a position of strength. Maybe if I approached it sensibly, I would be able to run.
After talking with the research physiotherapists at the National Hospital of Neurology in London I concluded there was no reason why I could not try to learn to run again. They said it would be tough, but that it should be possible. So I started, on a typical Couch-to-5k plan…
The biomechanics of CMT mean that I have high arched feet, muscle atrophy in my feet and lower legs, and reduced strength in my limbs. My sense of balance is impaired. And because the nerves conduct signals to my muscles so slowly, muscle development, if it occurs at all, takes a very long time.
My feet at rest – and in ankle/foot orthotics which make it possible for me to run
My biomechanics have made my journey to run again long, hard and fraught with setback. I have suffered tendonitis, inflammation, constant aches… But unlike when I was 9, when I stopped running, this time I was challenging the convention. And unlike that 9 year old little girl who hated to be last and who hated to be slow, this time I wasn’t quitting. I would accept the slow and just search for the solutions – the ways to improve and to become better in a “me versus me” scenario.
In 2009 I had to scale back my goals. My body took much longer to respond to training than “the plans” indicated, with a whole raft of unexpected consequences. I decided that my goal – to complete an Olympic distance triathlon – would have to wait for 2010. To achieve this, I needed more support. I asked Coach T if he would be interested in helping me along on my journey – to help me to do triathlon to become strong and to stay as strong as possible for as long as possible. I started on this next phase of my journey with one more person on my team…
The journey has been long and has been hard. I have spent a lot of time reflecting and learning about myself – in addition to the hours clocked training.
What are some of my reflections?
I think that we give up on ourselves too easily. We do the school sports day race and come in last and then quit because “we are the worst in the class”. We hear a diagnosis and then without question or challenge accept the doctor’s statements as our fate. We hear an unwanted truth and then choose to ignore it rather than internalising it and figuring out how we can work with that reality to be the best that we can be with the cards we have been dealt.
Sure, acceptance is a hard thing. But perhaps even harder is taking the next step – the moment in time that we decide to defy convention. There is nothing harder than committing to the unknown – deciding to push ourselves just to see just what we CAN do, embracing a challenge knowing full well that we cannot control everything and that we cannot guarantee our own success. It is tough to choose to do something where failing is a distinct possibility. It is HARD to willingly place ourselves in a place that is so uncomfortable, that can be so painful, a place where quitting would be a perfectly reasonable option…
But then we discover that we can transcend those feelings.
That is my journey…
I am doing triathlons to get strong and to be as strong as possible so that one day, if I do decline from my CMT, I will do so from a position of strength.
I am doing triathlons because I CAN do them.
I push myself because I believe I will only know what I CAN do by discovering my limits – and because sometimes conventions need to be tested, defied and broken.
Who knows if I will succeed? All I can do is TRI.
How many times have we heard that the purpose of life is not the destination but the journey? Or that sometimes the longest roads bring with them the greatest feelings of accomplishment? Or that the greatest feeling is doing something that other people say you can’t?
I wholeheartedly believe that all of the above is true. By looking inside, embracing the things that have scared me, fighting through and looking for ways to manage my pain, finding the support to help me to grow strong, and working toward my goals in a reasonable, structured, balanced and sensible way, I am in the process of doing what some people think is impossible.
I TRI because I CAN…
I TRI to beat limitations…
And I TRI this year on behalf of the CMTA and their quest for a cure for CMT Type 1A , which impacts 1 in 5000 people including myself. I TRI so that hopefully others diagnosed with CMT will never have to question IF they CAN in the future.