I have been a battler for most of my life, a lonely and anxious childhood with an alcoholic mother and larger than life father to surviving domestic abuse. In my forties my life exploded with new opportunity and adventure, meeting a most amazing person and finding myself travelling the world for the first time, writing about our travels and gourmet experiences and finally being able to delve into my lifelong dream of creating art. Whether painting a large scale portrait or sitting down to write the next chapter in our gourmet adventures my creativity was finally free and life was looking wonderful.

We had several magical years adventuring and travelling together. One of our rituals in each location was walking. Walking from one side of a new location to the other discovering and drinking it in. Early morning walks starting in the dark with hardly anyone else around, watching a new place come to life as the light grew and everything went from stillness to hustle bustle. Walking to our lunch at a new restaurant, exploring the details of a new district along the way. Walking to markets to collect delicious goodies. We loved it.

But just as our wonderful new life was starting, it began to unravel. Something started to change for me. It became harder for me to keep up. I had to keep stopping to rest. I would get exhausted easily. Lots of small things were becoming so much harder to do. Holding my arms up to style my hair, going up and down stairs, getting up from a chair. Within a couple of years my mobility had decreased from being able to walk from one side of Paris to the other, to not being able to stand for more than ten minutes and needing to use a cane to shuffle from one room in the house to the next.

I knew something was terribly wrong. I started on the long frustrating journey of trying to figure out what. I was eventually diagnosed with a very rare auto immune disease – Myositis. Only about 350 people in Australia are known to have this disease and the particular subtype I have, only affects about 12% of these.

I decided to write as a way of thinking out loud, of processing my frustrations and celebrating my wins. Reading about others similar experiences has been one of the most helpful things to me throughout this journey. Whether as a tool for seeing myself and recognising symptoms as part of figuring out the puzzle or as a comfort through realising I’m not alone in this. As I have been given knowledge, life energy and the strength to carry on through others journeys, I am paying forward the gift that others have given me, by sharing my own journey in the hope that it might be helpful to someone else.

I have learnt a lot along the way, about the challenges of having a rare disease. The frustration of the diagnostic process. The reality of many of the doctors you see having not seen it in their practice, complicating their confidence in diagnosing it and treating it. Figuring out the practicalities (or impracticalities) of managing multiple health providers and health systems, many of which seem to be hell bent on not giving you access to your own health records.

Learning to physically adapt to life with a body that is far less mobile than it used to be and hurts all the time. Coping with my previously porcelain complexion changing to angry red rash covered mess. Coping emotionally with the loss of my independence, the loss of the life I had only just started to live. And not just me, the life we had just started to create together.