I was diagnosed in December 2003 with Dermatomyositis and ILD/ Pulmonary Fibrosis.
I had been feeling ill since the beginning of that year and had finished work and started to claim Sick pay in May 2003. I haven’t been able to work since.
My GP referred me to a Dermatologist and he (mis) diagnosed me with Psoriasis and Asthma.
6 months passed and I got steadily worse. A pulmonologist actually diagnosed me with DM and PF. The Dermatologist duly apologised as he had missed it, being so rare.
Once I was diagnosed properly my treatment began and thankfully my body responded to the Chemotherapy (Cyclophosphamide) and Steroids(Prednisone).
I still couldn’t do very much for myself but I did avoid being taken into hospital.
The years passed by and I became involved with The Myositis Association in America (TMA) as it was much busier than the UK support group and I needed answers. I made many friends from overseas especially in America, Australia and New Zealand.
I met a brilliant lady called Leila Niman from Manchester and she became my mentor for many years. Miss her xx
I found Facebook about 10 years ago and started my own group called Myositis Ramblers which I still run today with help from my dear friend Pip from New Zealand.
Many things happened over the next few years making new groups and more friends over the years. My DM became stable and I have some great doctors, my Rheumatologist and my GP to thank for that.
However about 18 months ago my lungs started to deteriorate and the Oxygen that I had only used on flights around the world became necessary through the day and at night.
So despite being given 5 years to live when I was first diagnosed with the lung disease 15 years ago I am still here and still getting excellent care from the NHS.
I have oxygen concentrators with a long pipe in our home, an adapted bungalow which allows me to move around and to sleep well.
I was also given a portable concentrator by the respiratory department, again via the NHS. It doesn’t really give me enough oxygen to move around outdoors now but I am ok once I am sat in the car. I also have Cylinders for back up.
I am still here, still fighting and still very involved in the Myositis Community Worldwide.