It was another normal day when it happened; I was trying to run a staff meeting when suddenly I couldn’t talk. My voice became strange and after a few words no one could understand me. This had never happened to me before and I didn’t know how to react.
I immediately knew something wasn’t right in my body, but I thought I just needed to clear my throat. I never could have imagined it would be a muscle-weakening condition.
Even so, I went from one clinic to another, seeing doctor after doctor, and mostly prayed for good news. And after more appointments than I can count, I was eventually diagnosed with myasthenia gravis.
It totally changed our lives. At the time, I was only 29, newly married and building my career before having children. I had so many hopes and dreams for the future, oblivious to the fact this was all about to change.
After I was diagnosed, I remember feeling confused; I didn't know what to do or what I would go through in the coming years. I needed to fight for my next breath just to manage everyday things. I still have to go to a lot of hospital appointments and take medicines that have many side effects.
Since my diagnosis, we have become much more spontaneous. I still like to garden, bake, meet new people and explore new places. When I feel good, and it's possible, we do fun things we love and when I’m feeling weaker, we have learned to slow down and take things one at a time. We always try to make the most of our day but sometimes we find it best to stay in bed for the whole day.
As I learned to live with my condition, I realised that it’s important to keep thinking positively even when it feels impossible. I remind myself how good and valuable I am even when I can't do much, even when I need help from others and when things are not as I imagined.
When my son started asking me questions, I felt I needed to find a way to explore my condition that would help strengthen him. I was inspired to write a book, so that we had a resource to help him and his friends openly talk about our experience. “The Choice is Mine” is an illustrated children’s book that addresses the feelings of a young boy whose mum has a muscle-wasting condition.
Writing and sharing the book has been a big part of helping me and my family deal with the hard situation we are facing. I think it is also so important to represent people with rare conditions and to raise awareness of the different challenges that people face.
Particularly as a life coach, it has been so exciting to hear from people who have contacted me to tell me about how it has helped them and their family. I look forward to there being more representation of people with muscle-wasting conditions and more resources to use, so I want to be part in making that change.