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 feel like jelly. It felt the same when I walked up the hill leading to the library where I worked.
Then, I had a couple of falls where my legs gave way. I mentioned this to my GP and her reaction was “buy a walking stick”.
In 1997, we took long service leave and decided to travel around Australia. We had a 4WD with a rooftop tent. I’d started finding it difficult to climb up the ladder so we decided to purchase a Toyota Hi-Ace Camper Van just before we left . This made it a lot more comfortable for travelling.
During our trip things started to get worse I found it increasingly more difficult to walk any distance. I had a bad fall in Perth and broke a rib. Fortunately we had started our trip back and decided to just head home.
I consulted another GP on my return. She started the rounds of trying different specialists to see what was wrong. So over a period of 2 years and 10 different specialists, none of whom could come up with anything.
But my breakthrough diagnosis moment came when I was sent for some blood tests after a chance mention to my GP that my wrist was swollen. The test results revealed a high ANA reading. My GP then sent me back to check my CK (creatine kinase) levels. They too, were elevated.
At this point, my GP said “I think I know what’s wrong, it could be Myositis”.
From here, my GP arranged for me to see Prof Allan Sturgess. He took one look, at my skin, eyelids and said it was Polymyositis Overlap Dermatomyositis with Scleroderma. This was in July 1999.
I asked Prof Sturgess what the treatment was. When I found out it was high doses of steroids, I opted to try exercise to see if I could strengthen my muscles. But after giving it a try I had to give in and start taking Prednisolone at the high dose of 50mg. This was gradually decreased after we got it under control. I am currently on a maintenance dose of 5 mg.
I started to look around for more information on Myositis. One of our community workers found The Myositis Association (TMA) website run by a group based in the USA. I joined their group there was nothing in Australia at the time.
I still managed to continue working, but had to drive to work as I could not handle the train trip and walk to work. I remember trying to get down off the kerb to cross the road. I had to get to a pole so I could hang onto it and climb down.
After a while things seemed to be getting better. But in 2002 I was bringing in the washing and my legs just gave way, I fell down breaking fell and broke my right femur. I went to hospital and my leg was put in a full plaster cast. I was transferred to St George Hospital , Prof Sturgess organised a muscle biopsy which reconfirmed Polymyositis. After the fall, I had six months off work and then decided to retire.
I purchased a laptop and got myself connected to the internet. I received an email from Bob Goldberg (CEO of TMA) letting me know that Lawrence Short in NZ had resigned and asked me if I would like to take over his role and run the Australian/NZ Keeping in Touch Group. Thus, Myositis Australia was born. We started with 12 members. And as you know the Association has gone from strength to strength and we are now a fully incorporated Association with over 400 members. (see the History of the Association on our website).
I have not let the effects of Myositis govern my life. With the love, help and support of my husband, Geoff, we continued our travels around Australia and have also had a couple of overseas trips. We retired to Berry, NSW in 2004.
My biggest highlight was being awarded an Order of Australia Medal (OAM) for my services to the Myositis Association Australia , Rural Fire Service and Berry Historical Society.
Anita Chalmers OAM