kylie frost triathlon half marathon ankylosing spondylitis new zealand

Too Stubborn to Quit: My Life with Ankylosing Spondylitis

Two days ago I felt on top of the world. I had lots of energy, my pain levels were very low and I had just completed a half marathon with no negative after effects. I was quietly confident that the new medication I started three months ago was having a positive effect. This was good news since it is a little over four weeks until the IronMaori Half Ironman. A 2 km swim, 90km bike ride followed by a half marathon.

But by the next morning, the bubble had burst and my body made me feel like all of the dedication and training didn’t mean a thing. So why the sudden change? What went wrong? The weather. On Tuesday the sun was shining and it was a warm sunny day. Wednesday morning I woke up to rain. But no matter how I feel I can not stop now.

I suffer from a form of arthritis called Ankylosing Spondylitis. Inflammation in my spine and other joints is causing my bones to fuse together. The only way I can prevent this is to keep moving.

Two years ago I was almost in a wheelchair. I couldn’t walk very far and most of my muscles had lost all strength due to constant pain. I would have been using crutches to walk. If I was even able to stand up. Now I try and push through it. I am running out of time to train for my half Ironman. Some days it feels like I am not making any progress. I have to constantly look at where I started and how far I have come. When I started this journey I had a very simple goal. To complete a triathlon and maybe raise some awareness for Ankylosing Spondylitis along the way.

But somewhere along the way the goal post moved. I am no longer doing this for myself. Now I do it to prove a point. To myself and to anyone else who suffers from a chronic illness. I do it for women like myself who were told they are imagining the pain. For every larger woman who was told they just need to lose weight. That Ankylosing Spondylitis is a man's disease so they can’t possibly be suffering.

People who meet me today do not see someone with a disability. My Ankylosing Spondylitis is not under control at all, but I am in charge – sort of. Well, most of the time. I have now done three triathlons. I have also done a 12km traverse over the Auckland Harbour Bridge for Arthritis New Zealand, and numerous running races. Yes, you read that right. I can run. Wow! Even writing that gives me goosebumps.

Am I nervous about doing a longer race? Definitely. Do I think I can do it? Without a doubt. Not because I am cured. There is no cure for this disease. Not because the medication is working. But because I am too stubborn to quit. I refuse to let myself and my family down. Failure is simply not an option. I picked the IronMaori half for one very important reason. No strict time cut off. That means I can keep going even if I have to crawl over the finish line.

Learn more about Kylie's journey here and leave her some love in the comments below!

Written by Kylie Frost

Follow Kylie on Instagram! @kfrostnz

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2 comments

Thank you Theresa for you kind words of encouragement. It is through all the support from people like yourself that I have made it this far.

Kylie frost

Well done. Such an inspiration. Keep going and hang in there on the tough days.. xxx

Theresa

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