When I was 20, I my left eyelid started to droop. This was my first symptom of mitochondrial disease (mito), but it took 17 years for me to receive a diagnosis.
Based on my symptoms, it’s thought that I have had Chronic Progressive External Ophthalmoplegia (CPEO) – I’m waiting on genetic tests to confirm this. It affects my vision, and causes muscle weakness, pain in my shoulders, neck and hips, and difficulties with my digestive system.
When I was diagnosed, my doctor’s well-meaning advice was that I quit my job, move to the city, learn to read braille and prepare to live life as a blind person. But, I didn’t want to let mito define me.
Many people have asked me why I don’t get cosmetic surgery to correct my eye. They don’t understand that it’s not like a tummy tuck – getting surgery won’t fix my disease.
The disease gave me a life-changing decision: I could sit on the couch, being too embarrassed to go out in public, or I could get out there, have some fun and live life to the fullest. I’ve chosen the latter.
In 2016, my husband Andrew and I participated in ‘The Bloody Long Ride’ – we rode 1,300kms from Maryborough, Queensland to Sydney, New South Wales before taking on The Bloody Long Walk Sydney East.
In 2017, we took it even further – we rode the Brisbane Valley Rail Trail, completed the Bloody Long Walk Brisbane, and rode 1,600kms from Queensland to Canberra so I could compete in the National 24-Hour Solo Mountain Bike Championship, where I won gold in my age group!
When I listen to other people’s stories about mito, I feel lucky. By comparison, my symptoms are fairly mild. I’m determined to use my energy to raise awareness about mito, to share my story, and to live my life.
Melinda Macaulay, January 2018