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 IronMāori Half Ironman. A 2km 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 cannot 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.

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 IronMāori 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.