Growing up, I was the accident-prone kid, always covered in bruises or sore somewhere, but blamed it on my love for riding spirited horses and chasing that adrenaline rush.
I’d had knee pain since I was 10, and I’d be in agony sitting in the car when traveling or walking up and down steps in summer. I did my best to ignore it or wiggle my knees around until it felt better. My kneecaps always seemed to sit a bit weird.
At 27, I started to have auras, usually followed by a bad headache that came out of nowhere. For years I tried every treatment and specialist available (thank you health insurance!) I gave everything and anything a go, felt very alone and often wondered if it was all just in my head. I was told that I looked too healthy and happy for there to be a problem. My test results were always normal. I had to give up riding because I couldn’t wear my hair tied up or wear a necklace, let alone a riding helmet (I still can’t, sadly) without getting a migraine. Nobody could tell me why this was.
In 2010, pregnant and not being able to sleep due to shoulder pain, I ended up in Dr Fraser Burling’s office. One corticosteroid injection in my shoulder later and I have not had pain since. He also injected both knees, solving the pain that nobody else had been able to. He went on to fix many of my riding injuries and my migraines stopped!
The MCAS started after my pregnancy and was affecting my quality of life by 2014. I was diagnosed with IBS in 2018 after suffering with symptoms for a couple of years and explored other holistic avenues. The low-FODMAP diet helped everything settle down but wasn’t sustainable long term. I was brought up vegetarian and that worked for me for 37 years, until it didn’t. I tried a low-histamine diet which improved symptoms but there were very few foods I could actually eat. I then started a histamine stabilising medication which allows me to eat reasonably close to how I want to eat with the exception of a few foods that no longer agree with me. I’ve done a lot of experimenting and it’s been exhausting, but I eventually got there.
In 2019, age 38, a visit to Fraser to fix a hyperextended wrist came with the unexpected diagnosis of Classical Ehlers-Danlos Syndrome cEDS and Mast Cell Activation Syndrome (MCAS). My mother had been diagnosed with EDS five months prior. My nine-year-old son has since been diagnosed and explains why he was born at 32 weeks due to a placental abruption. We still can’t believe how lucky we were that day, thanks to an angel nurse who walked past at just the right time.
Through this experience, I become fascinated with health. I have always wanted to be in a position to make a difference, to give back and help people, so I studied as a health coach last year and more recently became a committee member with the EDS NZ Society. I also currently take part in the ECHO Advocacy program. I have brain fog and slow memory recall, but I have found my passion for integrative health and wellbeing, and that helps get me through.
Story published 12 November 2021