In sickness and in health – Zoe Davidson
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 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 bit a 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 travelled 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 travelled 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 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 less 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.
Life Story from Claire Maudsley
In Feb 2013 my beautiful daughter was born. Throughout my pregnancy I suffered from severe pain in my back, hips, legs and arms but this was put down to SPD. After she was born it improved for a while but then in the April I began to have a bright red rash on my face, arms, chest and back. I also started to struggle picking up my baby.
I went to the doctors who thought I was having an allergic reaction. When I said I couldn’t get up they told me I was depressed and even when I tried to explain I really couldn’t get up, they didn’t listen.
By the start of May I was struggling to do anything and was having to ask friends to help even pick my baby up off the floor. Still the doctors kept telling me I was depressed and it was all in my head in spite of my rash.
My mother became so concerned that at the end of June she paid for me to see a private rheumatologist. By this time I was swollen all over, my skin was blistering and agony, I couldn’t stand up, change my baby or anything.
As soon as I shuffled into the rheumatologists office he diagnosed me with DM. He wrote a letter to my GP telling him what to do and personally referred me to his colleague who also did NHS.
My GP gave me the drugs recommended but couldn’t get me an immediate appointment with the rheumatologist.
A few days later I was swollen to almost twice my size and could no longer move. I was admitted to hospital where the rheumatologist who had been recommended to me almost ran into my room, hugged me and apologised for the delay. I was crying at this point and so scared and he promised me he would get me better.
The first night my heart rate dropped to 25 bpm and I was rushed to HDU following a CT scan. I had heart failure, severe pulmonary oedema, a perforated colon and he told me I was within 24 hours of death. I was 39 with a 20 week old baby.
Thankfully he was amazing and 10 days later I went home just about able to walk.
My rheumatologist gave me his personal email and phone number and a week after I was released I went to Madrid with his blessing. I still could barely walk and had to hide from the sun but I got to celebrate my 40th birthday in the sun with my family and never could I have imagined being so happy to see it!
I stayed on the drugs for 8 months and then managed to stop.
I have now been in drug free remission for almost 2 years and have even managed to walk a mountain or two. But most importantly I am still here and enjoying every moment with my beautiful daughter who is worth it all!
Life Story from Joy Walker
My Name is Joy Walker and I am part of the Myositis Support Network Group. I am 70 years old and was diagnosed clinically in 2004 with Inclusion Body Myositis (IBM). With this condition we all deteriorate at a different pace. I have had many falls but two that have left me with problems. These like all of us we learn to compensate and just get on. I now cannot go out without my scooter and if very close can walk with my 3 wheel walker. I am lucky to have a wonderful husband who realises everyday he has to do more for me. Reaching is now almost impossible. I can still drive at the moment.
I Have found this support group so helpful. We all need someone to talk to or ask questions. We have been waiting a long time to be able to launch this web site. Now very soon it will be complete. We want people to put help and ideas on a post and mobility tools we have found useful.
We have a closed FB group page. We are not political and do not sell anything. We are not Doctors unless someone joins group and is a professional and says so.