My symptoms started in September last year when my fingertips would go almost black and the searing pain was like having them shut in a door. They would ulcerate badly for months on end and the joint pain was excruciating. I couldn’t go to work and by November, I was in hospital on an Iloprost drip. This was a bit of ashock for someone who had only ever taken Junior Disprin. 

The ward was full of people with similar symptoms, but none quite like me. That was lesson one, not everyone fits in with the text book. The Iloprost had no effect at all. I was devastated that they hadn’t found a solution but at least I met some people who I could stay in touch with to share stories of what works and what doesn’t to ease the symptoms.

I was constantly short of breath and felt like my lungs had shrunk in the wash. I had gone from a fit 36 year old capable of running 10k in 45 minutes to an old lady unable to climb the stairs and speak when I got to the top. X-rays were negative but eventually a CT scan confirmed lung fibrosis. I did what everyone does and googled it. Big mistake! The day after I went on holiday. The entire week was a daze and I was always tired as the condition started to catch up with me. I spent all day, every day snoring loudly on my sun lounger (I wasn’t informed of this until mid-way through the week).

When I got back, I was referred to the CTD Service at the Freeman Hospital in Newcastle. I had read all about them in RSA Hot News and thought wow, these guys know what they’re doing. They diagnosed me somewhere in between scleroderma and vasculitis with lung involvement almost instantly and signed me up for cyclophosphamide treatment. I was looking forward to the improvement in my lungs but at 36, this was emotionally a huge step given that I could be infertile following the treatment, especially if more than the usual 6 pulses were required.

I made up my mind in Katy-land that cyclophosphamide was after all, chemotherapy (albeit a low dose) and that it would leave me incapable of looking after myself or any movement at all really. I like to look on the bleak side of things so you get a nice surprise when it doesn’t turn out to be all that bad. I’ve been told that this is Eeyore syndrome. In preparation for becoming this shuffling recluse, I decided to re-decorate the house. Everyone told me this was a bad idea and that it could only make me worse. Naturally I took this on board and thought if that were true, I needed to condense the whole lot into one weekend. Over two days I glossed nine doors & frames, skirting boards, dado rails and the spindles of two flights of stairs. I have to admit, they had a valid point in thinking it may finish me off but the self satisfaction in proving them wrong got the better of me. As I started to paint, my lungs started to ease and I have absolutely no idea why. I did consider at length the prospect that the fumes were either making them better or perhaps melting them into a glue-like pulp. Anyone medically qualified is probably swallowing their eyeballs reading this.

I’ve done endless internet searches into alternative therapies that might help & am determined to find the triggers that make my condition worse. One by one I have gone without gluten, sugar, salt, carbs and alcohol (the latter didn’t last very long without severe emotional outbursts). My atypical Raynaud's doesn’t trigger with cold, damp or stress and Omega-3, Magnesium, High strength vitamin C and anti-oxidants don’t help. By trial and error, boiled carrots and spring greens (not winter or spring cabbage) definitely do. Again, I have no idea why, probably the placebo effect or perhaps I’m just barking mad.

I am the product of a happy union between a feisty Geordie and a straight talking Australian so getting on with it no matter how bad it gets is just what I do. The moral of the story? Keep going, don’t be afraid to ask for help and above all, eat your greens.