Kylie Frost is an inspiration to hundreds of people living with autoimmune disease. Kylie continuously shares her journey, the ups, and downs, online via social media and brings hope to many who are struggling with their health setbacks. Kylie reminds people like her, particularly those with ankylosing spondylitis (AS), that commitment pays off, and learning how your condition affects you is the most important thing you can learn about it.

Kylie’s road to Ironman began when she first sought help in managing her AS soon after she was diagnosed, at age 40. She was told to find a physiotherapist with a diploma in manipulative therapy and found one at her local swimming complex, West Wave Pools & Leisure.

“The first appointment didn’t go very well at all. The physiotherapist gave me a very stern lecture about how much effort would be involved. I believe his words to me were, ”No one can do it but you. If you ‘don’t find the time to do this, you can buy a wheelchair now.” Years of taking muscle relaxants and constant pain had made most of my muscles so weak they had ”switched off”. His advice to me was to do simple grade one exercise in the hydrotherapy pool next door at least three or four times a week as well as stretching and balance exercises every two hours every day at home”.

How did Ironman come about?

“One day, as I was leaving the pools, I stopped to speak to a young girl at the front desk. She mentioned seeing me there most mornings and asked if I was training for anything. I explained what I was doing and why. I mentioned that, years ago, I had looked at doing a triathlon, but it had never happened. I didn’t own a bike and my ankles were so bad that walking was hard, let alone running. She called over a manager and asked if she could give me a two-week pass to use the full gym facilities. I could try using some of the machines and bikes and maybe a treadmill. By now, I had been swimming for a couple of months, and the idea festered. Could I do a triathlon one day? It would give me something to aim for”.

As the months progressed, Kylie’s swimming got stronger. She was going to the gym for 30 minutes first and doing some strength exercises and using the bike beforehand. 

“I took things very slowly and carefully. I ‘didn’t want to cause a flare. I still ‘didn’t have a bike and I ‘couldn’t run, but I was able to walk a lot more and occasionally I had moments when everything came together, and my body would respond, allowing me to run. Not for long, but enough to give me hope”.

Ironman half – March 2019

“People who meet me today do not see someone with a disability.”

Kylie’s AS is not under control, but she says she is in charge. In March this year, on her birthday, Kylie completed the Ironman half triathlon. 

Kylie’s half Ironman was tainted with a previous shoulder injury, making changing gears and drinking on the bicycle difficult. These challenges forced her to stop at all the stations for fluids and nourishment. The stops affected her time. After the swim leg, Kylie faced physical and mental challenges during the bicycle and running legs. These included wind making steering the bike difficult, blisters started within the first 2 km of the run, and her left leg cramped up from hip to ankle. Running was too painful to endure. 

Finally, Kylie got her medal and towel, and a nice lady found her a chair and removed her shoes. 

“One foot was covered in blood. But I had done it. Despite AS and a busted shoulder. Despite surgery just before Christmas. Even though I couldn’t change gears easily or eat and drink and had at least six blisters and feet covered in blood. Despite a tendon injury ten days out. I had finished. Not within the time but I had completed my triathlon. No more. I promised myself I would stop”. 

And then she went home and entered the full Ironman 2020.

Ironman 2020

Most people who decide to train for an Ironman type race if they put the time in can do it in well under a year. Some do it in as little as three months. For Kylie, it has been four long years battling pain, fatigue, injury, and health setbacks. 

“I have had to overcome reduced mobility and pain and find ways to make it work for me with my health. I have had to overcome the physical and mental challenges of living with Ankylosing Spondylitis. I have had to be stronger than I have ever been in my life. I believe with all of my heart that I will make it to the start line. I will earn myself that extraordinary title that only the best athletes ever get. Full Ironman. So next time you find yourself saying I could never do that. Instead, ask yourself this. Is it important enough for me to try?”

What is Ankylosing Spondylitis?

Ankylosing spondylitis is a form of inflammatory arthritis that affects the spine and joints of the lower back. Symptoms include chronic back pain and stiffness. In severe cases, the affected joints in the spine may become fused and inflexible. There may also be deformity or curving of the spine.

The condition can occur at any age but is most likely to develop between the ages of 13 and 35 years and is uncommon after the age of 40. It affects men almost three times more often than women.

Genetic factors may cause AS. About half the risk is related to a gene called HLA-B27, although the gene is also present in healthy people who don’t have the condition. Genetic links between AS and Crohn’s disease or inflammation of the bowel exist too.

There is no cure, but treatment and effective self-management can minimise symptoms and prevent complications.

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