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…