Damian’s Journey – IBM

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…

It all began when I was nineteen years old. I had become very tired and suffered from headaches almost every day. I was skipping university, waking up in the afternoon and staying in bed all day. One night I was sitting in the car and felt pain in my left leg, mainly between the crease…

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…

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…

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…