Living with Dermatomyositis
Welcome. My name’s Rowena Newton and I’m a 40 something wife, mother of two children and three dogs. Career wise, I’ve worked in Marketing Communications and I’ve had my own blog at beyondtheflow.wordpress.com
My second pregnancy triggered an auto-immune nightmare where my muscles started attacking themselves. However, the first symptoms I noticed was cracked skin on my hands, which was diagnosed as dermatitis. My extreme fatigue and the initial muscle loss was put down to the new baby and I also had a very active two year old son.
Down the track, I developed severe pain and immobility in my knees and was off to the rheumatologist. Blood tests were ordered which showed a false negative to Dermatomyositis and I was diagnosed with osteoarthritis. As my knees seized up, I kept up my walking believing that I needed to use it or lose it. I didn’t think of it at the time, but the physio pointed out that the pram had become my walking frame.
While my GP was stumped, my blood tests were showing positive for this antibody called JO1. I had no idea what this was but it seemed quite erroneous. As it turned out, that was the red flag. The other red flag was that I had red stripes across the knuckles on my hands with white in between. You could say it’s a pretty clear indication that “Dermatomyositis is here”.
Since Dermatomyositis is so rare, it’s frequently diagnosed late in the piece causing a lot of unnecessary suffering, increasing the risks and also reducing quality of life in the long run. I couldn’t roll over in bed, get out of a chair without a battle or dress myself. Yet, I had no equipment. Not even a walking stick. I could walk around where we live because it’s flat, but I had a rude shock when I tried getting up the station stairs in Sydney. It felt like I was wearing concrete shoes.
I was finally diagnosed after my uncle saw me at my cousin’s wedding. He is a dermatologist and he noticed the red stripes on my knuckles even in the ambient lighting, along with my awkward movements and significant weight loss. He ordered blood tests and three days later I was admitted to Royal North Shore Hospital. I was there for 3 weeks and then went to Mt Wilga for rehab for about 6 weeks as a live-in patient. I’m really glad I did that because I was able to receive concentrated physio which was important to salvage what was left of my muscles.
While I have my ups and downs, I have no doubt rehab has made a long term difference. Moreover, as much as I might long for peace and not having to exert myself, my kids get me out and about and all this incidental exercise adds up and I walk as well. I’m a keen photographer and really love going for walks viewing the world through the eyes of my lens. A highlight for me was attending the Adventure Camp two years running with MDNSW where I went surfing, parasailing and even on a quad bike. I periodically do adult dance classes. My young daughter is a dancer and her teachers are aware of my limitations. Many of the moves in the ballet class were similar to yoga or my physio exercises, but I had a great group of friends to share it with.
About 8 years ago, I was diagnosed with Interstitial Lung Disease, which is a known complication of the Dermatomyositis. While I was expecting this might happen, when the diagnosis came, it hit me worse than a ton of bricks. My kids were only 7 and 5 at the time and it was absolutely crushing. As my young daughter wrapped her arms around my legs, I thought of me not being there and just this empty space. Who was going to pick them up from school? Who was going to do her hair for the dance concert? Moreover, they were so young, they wouldn’t remember me and with that, they would also lose so much of themselves. My memories of them. Mum as a reference point as much as having their mother’s love.
Being alive for my kids was an incredible motivator. It was all that mattered. I had to put on my thinking cap. Work out how to increase my chances. Be strategic. Knowing that singers and brass players have increased lung capacity, I decided to focus on working on the good parts of my lungs and building them up, rather than focusing on the bad. That might sound strong and courageous now. However, as I set out on this journey, I was clawing my way along the ground in desperation. I was distraught and desperately grasping for the only hope I had.
No matter which way I turned, all roads led to that much dreaded prescription…consistent exercise. I struggled with both. I’ve done a bit of swimming, but much prefer walking especially with my camera in tow which doesn’t do wonders for my heart rate. My physio has also prescribed exercises, which I simply forget to do. As a whole though, I try to increase incidental exercise and one day can vary significantly from the next and it can take a day to recover when I overdo it. (By the way, my trick for consistency has been using the step counter on my phone. It allows me to nag myself. My physio has also been fantastic.)
There’s so much more that could be said about living with Dermatomyositis. However, what I would like to stress most is that there is no crystal ball. No two people are alike and it’s hard to know how it’s going to pan out. It is a serious diagnosis and I’m not going to underplay the impact it has on just about every facet of your life. However, you’re not powerless in this battle either. There’s so much you can do to improve your long term prognosis and you can also shoot yourself in the foot.
In so many ways, life is what you make it and you choose how you respond to these challenges. You can see the good in everyday or paint the sky black. You can also look around at everyone who seemingly has the perfect life and feel bitter. Or, you can try to make the most of what you’ve got. My favourite quote is Carpe Diem…Seize the Day. I might not get there every day, but at least I can say I try. It’s now been 13 years since Dermatomyositis moved in and we’re both still here. I just need to stay a step ahead.
I’ve been in remission for 6 years and I’m largely okay aside from the lung infections and coughing. I can’t promise someone who has just been diagnosed and finding it excruciatingly difficult that things will get a lot better, although they’ve largely turned around for me. That said, I still haven’t felt able to return to paid work, although I’ve been beavering away on my blog and am writing the book. It isn’t the life I thought I was going to live and I used to put a lot of value in my job and career. Now, I’m hoping to get there through the less certain route of my writing.
For more information about Dermatomyositis, you can visit the Myositis Association of Australia myositis.org.au. Myositis is the umbrella term for Polymyositis, Dermatomyositis and Inclusion Body Myositis and they have information sheets about each type on their web site.
You can also visit MDNSW Fact sheets for a fact sheet on Inclusion Body Myositis