Myotonic Dystrophy

My story of Myotonic Dystrophy

I was diagnosed as having Myotonic Dystrophy in the Spring of 2012. The year the Olympics came to London. The year I was told some symptoms were not just "me getting older". I was 36.

I did not think I had Myotonic Dystrophy. Only a year earlier I had applied to run the London Marathon (wasn't chosen). I was seriously looking into trips to the Antarctic to complete all 7 continents on Earth visited. I had a 1-year-old son. I could easily walk the 2 miles into town. I had an active life. How could I possibly have Myotonic Dystrophy?

But my sister had been diagnosed. And then my mother. I thought should get checked as well. Just to confirm I was ok and did not have any problems. The day of the result came in and I went to the doctor who cheerfully told me I had Myotonic Dystrophy. There was no doubt. That was the day I found that I had an incurable disease that will gradually worsen for the rest of my life.

At first, I thought Myotonic Dystrophy would not affect me too much. I was still mobile. I could still walk and even run (albeit slightly slower than before). I would be alright. It effects people differently even in members of one's own family. I clung to this hope.

That was 9 years ago. A blink of an eye in some respects. In others it is a life time ago.

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Nine years later

There are both visible signs of Myotonic Dystrophy and invisible ones. Visibly my arms and legs are much thinner due to muscle waste. This has led to extreme pain (especially in my legs) meaning I am unable to walk for any long distance and standing for any amount of time is challenging. As my condition has worsened, I have, very reluctantly, agreed to use a wheelchair for days out. I have also had to invest in a stair lift as walking up and down stairs is no longer feasible. The other visible symptom is loss of hair. From having lock of thick flowing brown hair, I am now a baldy.

There are other, less visible, symptoms of Myotonic Dystrophy. For me, I suffer from regular, acute stomach pain. I need to be careful of what I eat and how much.

I have to go and have my heart tested every year. That's kind of an important muscle and needs to be monitored for any problems.

Fatigue is the big one. IT IS NOT A CASE OF NEEDING MORE SLEEP. A quick power nap does not help. I can get tired very easily and quickly. Evening socialising can be a challenge. It is akin to being constantly under the weather. A little jaded. An invisible but constant part of the condition.

During Covid I was placed on the priority list for vaccine as my immune system is compromised. I got double jabbed really early! Thanks NHS.

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That’s pretty much where I am right now in terms of Myotonic Dystrophy.