It was the Spring of 2003, the year of my 50th Birthday.
I was very stressed at work, having to do more and more hours and tired ALL the time. I would come home at 4pm and fall asleep on the sofa. My hands and scalp were very itchy so I went to see my GP. She diagnosed Contact Eczema and gave me Steroid Cream. When the itching started on my knees, back of my ankles, chest and face, she said its not contact Eczema, maybe an allergy?
I was sent to a Dermatologist, as by now my hands were peeling, itching and splitting open. The SR manager diagnosed Psoriasis and gave me more creams but they made my hands itch even more.
One day in September 2003, I was lifting a box out of the back of my van (I was a Vending Operative – filled and cleaned Vending machines for 16 years) and my thumb split open. Even with a plaster on the blood just kept coming. I went back to my GP and she gave me a sick-note.
At that time my breathing was becoming laboured, and I was so very tired. My Doctor said my earlier mild Asthma had flared and I was sent for allergy tests, and an X-ray. I had those, but before I could get the results, my breathing became so bad and the Inhalers were doing nothing to help. My Doctor then heard “Crackles” in my Lungs which was not a good thing and I was referred to a Pulmonologist. After my examination she asked me what I thought was wrong, I said I feared I had Lung Cancer. She said, no, there is no Cancer in your Lungs, but the x-ray shows Fibrosis in the base of both of them .
She then said she thought I had Dermatomyositis (I asked her to write it down) and she said that although it was not curable, it was VERY treatable.
I was sent for a barrage of blood tests, a CT scan, and a week later went back to see the Dermatologist for the pre arranged appointment for the Allergy results. The Dermatologist looked at me and said, “well, you don’t look very good”, and when I told him I had had a CT scan of my Lungs, he opened my notes and gasped. I could read, upside down it said DERMATOMYOSITIS.
He was quite agitated, and said he had never seen a case in all his years as a Doctor and could he bring some colleagues in to have a look ! ! !
I was taken down to the Pulmonologist that afternoon, and the Rheumatologist was brought in. After talking about me and looking at all my Results, I was asked what was bothering me the most, I said my breathing. So, I was taken in as a Day patient the very next day for Cyclophosphamide by IV and Prednisolone by IV.
These were “The big guns” and boy did they work.
I was able to walk a little, talk on the phone, and eat without choking within days. This treatment continued for 6 months, and then I was given Imuran and Prednisone in tablet form.
I was diagnosed in December 2003 with Dermatomyositis and ILD/ Pulmonary Fibrosis.
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 friends, Pip from New Zealand and Val Foreman from UK.
Many things happened over the next few years, making new groups and more friends. 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 only used on flights around the world became necessary through 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, particularly Myositis Friends Support Network – MFSN, where I have some very close friends.
Christine ‘s journey ended on 6th November 2019. Her DM was under control with the drugs but no more could be done to help with the Lung Fibrosis. She is greatly missed in the myositis community but we hope to see her legacy living on among the people and work she set up – Val Foreman