When I was diagnosed with myositis – a rare auto-immune disorder that involves chronic inflammation of the muscles – I was in utter disbelief.
It seemed to come out of nowhere. I was in my mid forties and very fit and active. I’d run my fastest ever marathon just a few months before, in Berlin. I couldn’t believe that I was being diagnosed with a chronic muscle-wasting condition.
It seemed seriously doubtful that I would ever be able to run long distance again.
But three years later, I’m about to fulfil my lifelong dream of running the London Marathon – as a member of MDUK’s #TeamOrange.
“I read that I might lose my ability to walk – it was scary”
Before I was diagnosed, I had never heard of myositis. I remember searching for information online – I can say from personal experience that is not always a good idea!
I read about people losing their ability to walk, not being able to swallow their food, and other life-changing consequences. It was scary.
Myositis has no cure and if left untreated, it can cause muscles to weaken. Permanent functional loss can occur if the correct diagnosis is not made early. Fortunately, I was diagnosed at a very early stage.
My condition has more or less been under control from the beginning. But it hasn’t been easy.
“Learning to accept the ‘new me’ since being diagnosed with myositis”
There were some very difficult times in those first couple of years.
I had to learn how to deal with symptoms like muscle tightness, discomfort in my legs, and fatigue. Finding the right balance between medication, side-effects and symptoms took a long time. Some days, my muscles really hurt.
Learning to accept that this is the “new me” has been a long road, but my condition hasn’t changed everything. I still work full time as a demand manager for a Danish audio company, I see my friends, and I enjoy travelling. Running and fitness training is still a very important part of my life.
In fact, physical exercise has become crucial to how I manage my condition.
Running and strength training to manage myositis
I still remember the moment I crossed the finish line at the Copenhagen Marathon in 2022.
It was the first marathon I had ran since my diagnosis and completing it was a huge personal victory for me.
As someone with myositis, running is also good for my body. Strong muscles are more resistant to the effects of the condition, and my doctors encourage me to keep up my running and strength training.
It’s not always easy. On bad days, exercise can be painful and I have to be careful not to injure myself.
I focus on getting more rest and following an anti-inflammatory diet. I do daily mobility exercises, stretching, and go on small walks to keep my muscles loose. On good days, I give it my all.
I pushed myself too much in preparing for the Copenhagen marathon. On race day I felt tired, and my legs were aching. In London, things are going to be different – it will be a once-in-a-lifetime experience and I am going to enjoy every minute of it.
Winning a competition through charity partner Tikiboo
The London Marathon is one of the greatest and most popular runs in the world. While I’ve tried numerous times, I’ve never been successful in the ballot.
Last year, I decided to apply for a charity place – that’s how I discovered MDUK. I felt an instant sense of belonging when I learned that the charity embraces people like me who are living with myositis.
If I was going to run the London Marathon, I wanted to do it as a member of #TeamOrange.
I entered a competition for a place through one of the charity’s partners, Tikiboo. I quite literally couldn’t believe it when I learned that I’d won. Until the MDUK team got in touch, I was worried it wasn’t real.
But there was no mistake. My dream was going to come true – and it was time to start training.
Raising awareness of myositis and dermatomyositis
I hope that my participation will contribute to raising awareness about myositis.
If the condition is recognised at an early stage, the chances of effectively treating the symptoms improve significantly – I’m proof of that. The reason I was diagnosed so early was because of the sudden appearance of a purple rash on my hands and face.
It was a frustrating and uncomfortable symptom but in hindsight, it helped me receive effective treatment sooner. The rash – which turned out to be dermatomyositis – made it easier for the doctors to diagnose my myositis.
By the time I started feeling the first symptoms in my muscles, I was already in medical treatment. The more people who are made aware of symptoms, the likelier we are to be able to offer effective treatment earlier on.
Living an active life with chronic condition
I would also like to show the world that it is possible to live an active life while living with a chronic condition.
In my free time, I enjoy running with my buddies in the local running club. We share a lot of great moments, like going to races together or running trails in the forest.
The last marathon I ran was in New York City in November 2022. It was a fantastic experience in an unbelievable atmosphere. In London, I’ll be running my 12th marathon.
Conditions like myositis don’t have to stop you from living your life – you can even run marathons!
Are you interested in supporting people living with muscle-wasting conditions? From bake sales to skydives, full blown marathons and dress down days, there is something for everyone! Join the team and take part in an event for MDUK this year.