Myo Journeys

In her early 40s, my mum began a journey that would alter the course of her life. Slowly, she experienced weakness and overwhelming fatigue, to the point of having to stop work. As she humorously put it, “chairs, stairs, and toilet seats became my worst enemies.” Sadly, as is common with many struggling with uncommon…

Rachel’s day always starts with a cocktail of medication and a good day is when she’s able to get out of bed and do some ‘normal’ daily living activities. At times, she is profoundly disabled. Days on end unable to move, sit up, stand, walk, shower or change clothes, hold a spoon to eat, hold…

My Journey. I was a happily retired 69 year old woman in around September 2019.  My husband and I had just finished a half lap of Australia, from Victoria, through South Australia to the Northern Territory, then across to Western Australia and down the west coast, across the Nullarbor and home to Victoria. I was…

I never thought in my wildest dreams that I would be in a wheelchair.

Sporadic Inclusion Body Myositis At the end of 2016, I was changing insurance companies and the new company sent me for blood tests. When the results came back, they immediately said: “we are not going to cover you, your CK levels are too high”. What the heck are CK levels, I wondered? I went off…

I’ve lived with Myositis for approximately 17 years. After taking 6 years to achieve a diagnosis, I understand the need for increased awareness and education for Myositis. My first symptoms were subtle. Perplexing reduced endurance for walking, difficulty rolling over in bed, getting out of chairs and fatigue over several years, eventually led to an…

Val Dempsey. Everybody has a story that is significant in their lives and I don’t believe my story is any more significant than any other. But I do accept this is my personal moment and my experience, such as it is. I am grateful to have had a fairly healthy life with nothing outstanding happening…

In 2020 at the beginning of the Covid pandemic, I was in lockdown and doing lots of walking to maintain some fitness. I was also taking statins for high cholesterol.  My muscles and tendons started to hurt. I lost all strength in my legs, hips and eventually my arms and upper torso. When I stopped…

I used to play football and was known for my running speed but, at 43 years old I discovered I couldn’t run. That was in the mid 1990s.  Progressively over a few years I realised that I was losing strength. In 1998, I bought a pushbike to try to improve my quads. I would ride…

I first noticed the weakness in my right arm in 2015.  Neurologists did tests and thought the problem came from my spine and I even went to see a back surgeon who then sent me back to neurology.  After many more tests I was told I had motor neurone disease and had between 6 months…

My Myositis story began around Christmas of 2019, when I was 37 years old. I was visiting my in-laws in Bega, and we were surrounded by bushfire smoke. For the first time ever I struggled to walk from the car to the shops without sitting down. I put it down to the smoke but my…

Looking back , I now realise when it was that I first noticed the symptoms of what turned out to be the start of Myositis. In 1995, I started to find it difficult to walk up the ramp leading to the railway station.  By the time I reached the top my legs had begun to…

Patient S – My journey started July 2013 when I was 37 years old. I already had Fibromyalgia. I was diagnosed with that in 1997 and managed that without medication. I worked full time with doing an office job which I travelled to by train. Then walked two city blocks. I began to notice that…

Why am I taking SO much longer to trudge up the hill to the railway station ? Why am I finding pulling down a whiteboard so much harder? Why are stairs getting to be difficult? Why am I having so much difficulty carrying equipment from room to room? Why have I pulled a muscle in…