Kylie Frost, 47, from Auckland, NZ, shares her inspiring story:
Writhing around in agony, it was impossible to get any shut eye.
“My shoulders, my hips … my back,” I groaned in bed to my husband Tony, 50.
Cuddling me, he was helpless to ease the pain.
After having my three kids, William, 19, Alex, 17, and Samantha, three, I’d suffered with back pain.
Now, it’d intensified, and spread to every part of my body.
I was also desperately short of breath and experiencing dizzy spells, too.
Doctors had ruled out endometriosis, fibromyalgia and irritable bowel syndrome but still there was no diagnosis for my mystery condition.
“You can’t go on like this,” Tony said taking me to a rheumatologist, desperately seeking answers.
After an MRI and blood tests, finally I had a diagnosis.
In hospital waiting to find out what was wrong.
(Image: supplied)“You have Ankylosing spondylitis,” the rheumatologist said, explaining that AS was an incurable inflammatory arthritis affecting the spine, lower back, shoulders, hips, ribs, hands and feet, and my shortness of breath was due to my rib joints being inflamed.
It wasn’t the best news but at least I had an answer and could start to get better.
Or so I thought…
“It’s a degenerative disease,” the doctor said. “I’m sorry, gradually it’ll get worse.”
“This is a life sentence,” I sobbed into Tony’s arms.
Intense physiotherapy would help increase my muscle strength and slow the disease, so I threw myself into treatment.
Gruelling exercises and walking in a hydrotherapy pool three times a week slowly became more manageable over time but I still relied on crutches to get around.
“Keep up the good work,” my physio encouraged.
“I’m going to defy the odds,” I said.
I was determined to defy the odds.
(Image: supplied)Next morning, filled to the brim with welcomed oomph, I put on my mask and snorkel and with a little help from my physio I started swimming.
“You should set yourself a fitness goal,” the pool receptionist said one day.
I thought it was a great idea.
“I’m going to do a triathlon,” I said to Tony.
It was a huge challenge especially as I’d never ridden a bike and was wobbly on my feet but I had nothing to lose.
“If anyone can do it, you can,” Tony encouraged.
As the months passed, I gave everything I had to my training and learnt to ride a bike.
I learnt to ride a bike.
(Image: supplied)Eventually, I didn’t need my crutches and, although I was meant to be deteriorating, amazingly, I was feeling fitter and healthier than ever.
Ten months on from that grim diagnosis, I took part in my first Try a Tri.
“That was amazing,” I squealed in delight, crossing the finish line of the 100m swim, 10km bike and 2.5 km running course.
And with only my ankles aching afterwards, there was no stopping me.
When Tony completed an Ironman race soon after, he inspired me to take on the challenge, too.
Setting up a Facebook page Kylie’s Race to beat Ankylosing Spondylitis to raise awareness, I started taking my training to new heights.
It was so tough with cycles, runs and swims each day.
My body ached but I couldn’t quit with so many spurring me on through my Facebook page.
Working out.
(Image: supplied)Over the next five years, I pushed myself until I was fit enough to take on the 3.8km swim, 180km bike ride and 42.2km run Ironman race.
“I believe in you, and you have to believe in you, too,” Tony whispered in my ear before the gun went off.
With each stroke, spin and stride, my body throbbed, but Tony’s words stayed with me.
With 17 hours to complete the course, as day turned to night, a friend ran by my side lighting the way with her phone and as the sun began to rise my mum trotted alongside me for the last two kilometres.
“I did it,” I cried, falling to the ground, a mixture of exhaustion and exultation.
Everyone was so proud.
Everyone was so proud,.
(Image: Jocelen Janon)“You’ve proved that anything’s possible if you believe,” a lovely Facebook follower wrote.
I know the day will come when I’ll be in a wheelchair, but I’m determined to keep that day at bay for as long as possible.
Until then, I’ll keep challenging myself.
I hope my journey inspires others to never give up hope.
I’m just a regular Kiwi – I lead a normal life, have a regular job, I’m a wife, a mum, and like so many, I was dealt a rough card.
But I went from being an invalid to an ironwoman.
I’m proof you can achieve anything you set your heart and mind to.
