My Story

I am a photographer, animal lover, foodie and musician, and at 25, I was diagnosed with Ankylosing Spondylitis.

I was heavily involved in sports at the time, training up to 6 days a week. I would wake up at 4am to go rowing, then go to uni, hit the gym, and go to work. I was gradually developing joint pain that I hadn’t experienced before, but I brushed it off, it was annoying but it wasn’t a big deal. I probably just needed new running shoes.

After 8 or 9 months of increasing pain, and a new set of joggers, I started to worry. I began seeing a physiotherapist who told me that my running technique was putting too much pressure on my joints, and all I needed to do was a few simple exercises each day.

I returned the following week in excruciating pain. I told the physio that the exercises were making the pain worse.  I was having trouble getting out of bed in the morning, and was crying out in pain at work. She told me to see a doctor and request blood tests and radiographs. The look on her face terrified me. She suspected the worst.

After several months of tests, x-rays, MRIs and referrals, I finally managed to meet with a rheumatologist who told me that I had something called Non-Radiographic Ankylosing Spondylitis. He was quite nonchalant about it all. Shocked and bewildered, I was ushered out the door with a party pack of drugs and a pamphlet on AS. He didn’t even tell me what it was.

Over the next few weeks I trialled each drug that the rheumatologist had given me for a few weeks at a time, to see how each of them eased my pain. They did not. I was reading obsessively, trying to find clues to how people lived with AS. I refused to accept the fact that I would be taking anti-inflammatories for the rest of my life. And there was no way I would be agreeing to corticosteroids or immunosuppressants.

That was when my dear friend Kate sent me a copy of a book she was reading, ‘The IBS Low-Starch Diet’ by Carol Sinclair. I was sceptical at first. Surely a change in diet couldn’t make my arthritis pain just ‘disappear’. But the further I read, the more I realised that this biography could have easily been about me. Every story, every symptom. I had been living with AS for years without ever knowing I was sick. I always complained of feeling sick after every meal. I was constantly lethargic and bloated. I had recurring headaches, sore eyes, back and neck pain. Sometimes I would wake up with a jaw so stiff I couldn’t open my mouth. I learned I had breathing difficulties when I went for a medical for a job I was applying for and couldn’t fill my lungs to the minimum required volume. These are all symptoms of Ankylosing Spondylitis.

I stopped taking the anti-inflammatories and immediately cut all starch out of my diet. I saw results within 5 days. Suddenly I could get out of bed with ease. I felt stronger, brighter, healthier. I was still hesitant to credit the diet with this sudden change. I could just be having a good week. Inner turmoil began to eat away at me. I wanted the diet to work so badly, but on the other hand, I couldn’t imagine a life without bread, pasta, cake or potatoes, and secretly hoped it wouldn’t work. But after only a few weeks, I couldn’t deny the radical improvement. I felt like running a marathon. I felt better than I had in 12 months.

A simple diet turned my life around. I can’t imagine where I would be without it. I caught the disease early on enough that I do not have any permanent damage or fusion of my joints. Some people are not so lucky. I want to share my story in the hope that it may help others to prevent irreversible damage and stop living in pain, so they can turn their lives around too.


2 responses to “My Story

  1. This is so inspiring Niki! So well written. I’m so excited about reading your blog and cooking your tasty recipes! Wishing you health & happiness always xxx

  2. We do take so many things for granted and health is one of them.Am glad that you found the answer to your pain and in doing so will eventually help many others.

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