My love affair with Dermatomyositis started on the 14th February 2004 aged 22. Maybe not quite the present I was expecting, and I think I would have preferred flowers, however, Dermatomyositis has stuck by me through my ups and downs, which says a lot for its commitment!
So what went wrong?
It was in 2003 and I was in my final year at University and I just didn’t feel right. To be honest I put it down to the stress of my final year and maybe a bit too much partying! It took 6 months for doctors to listen to me, and to get a diagnosis was a relief in some ways! I felt like standing outside my GP surgery with a sign saying, ‘see, I wasn’t making it up’! Which is how they made me feel. I was a mess though, in a dreadful state and in pain, life had become hard work and I wasn’t quite sure how I was going to get through it.
I could talk about the symptoms I had, the treatment I have received and the flares I have gone through, but I actually want to focus on what Dermatomyositis has made me do. I remember when I was diagnosed I was so scared that I was never going to do the things I had dreamed of, and that the three years I had studied at University would be wasted, and what sort of life I was not going to lead. Well that was wasted worrying time, though totally justified, I mean I couldn’t put my socks, so I think I was allowed to be a bit concerned!
So in this eleven-year relationship, I have called the shots, I am the one who wears the trousers, the bossy one! We’ve traveled a lot, road trips, city breaks, and amazing adventures in Europe and beyond. Seen the bright lights in New York, got soaked at Niagara Falls, eaten pizza in Italy, and went to the other side of the world, Australia.
For me, Australia was a game changer and got me back on track with life. It was the change I needed, a jumpstart to greater things. I went on my own, against my consultant at the time’s advice and was the cause of great anxiety for my parents for five weeks. It was the BEST five weeks ever! I traveled up the East Coast to Cape Tribulation, went surfing (how, I have no idea, suffered big time) sailed around Whitsundays, saw Ayres Rock, slept in a swag bag and hung out with crocodiles. I made lifelong friends, who I still travel with every year since meeting in Oz seven years ago. They are good friends, stuck by me, never made an issue if I can’t do something, and always encouraged me to give it a go.
Friends and family have been key, I have never been wrapped in cotton wool (I imagine it could get quite itchy, let alone the sweating) they have just been there for me. Through amazing times, crappy times and scary times. There have been tears, a lot of tears – that’s acceptable though after all Myositis is a bit of a bitch! Friends have left – that hurts, but you know what? Life goes on and the friends I have rock; they get it, and they’re there. Just as I am there for them.
My family, well I just love them. Couldn’t ask for better, I am lucky. Always encouraged, never held back. Allowed to make mistakes and learn from them, and never got the ‘told you so’, or ‘do you think you should be doing that’. I think my trip to Oz probably deserved that, but no, was just told to stay safe and keep in contact, which I did.
Work isn’t always easy, my fatigue gets the better of me. I have noticed that this has got worse over the last few years, and this worries me. I do think eleven years on, I may be hitting the next stage of Dermatomyositis and this concerns me, but I am sure that I will find a way to deal with it. I know I do too much, and I could probably find an easier job and take on fewer commitments, but at the moment I am going to continue fighting for what I enjoy.
In the 11 years that I have had Dermatomyositis, I’ve lost weight, gained weight, lost hair, sweated a lot, mastered the art of napping, had needles jabbed everywhere, seen most parts of my body via Ultrasound, MRI or X-ray and spoken to a lot of doctors – I feel exhausted just writing that! I have taken it on quite some journeys, challenged it and eventually become friends with it. I know that it’s tested me and still does, and always will do, but it’s made me achieve things I am not sure I ever would have done if we hadn’t been introduced on Valentine’s day.
I have a lot to thank Dermatomyositis for.
Author: Zoe Davidson (UK)