I have a story to tell
Share your stories of Scleroderma and Raynaud's.
Lucy Sephton, 40 from York explains why giving up her dream job is the best decision and how proud she is of her daughter Daisy for raising a staggering £3,764 for SRUK and how she wants to get involved more in raising the profile of the condition.
“When I was younger I always felt the cold but didn't really think anything unusual about it. It was as I got into my teens I started to have Raynaud's but also really achy and painful joints that would swell up. There were some days where I simply couldn't get out of bed.
When I first went to the doctors they referred me to a rheumatologist and I was initially diagnosed with mixed connective tissue disease. It was only when I went for some other tests they suggested I may have scleroderma.
The statistics I was told were pretty frightening. I was 24 when I was diagnosed so I suppose 16 years or so ago, the outlook was a bit different. I was told I would only have 10 years to live. I was devastated.
The first thing I did when I got home was google it, which I remember was very scary and I couldn't make sense of was truth and what seemed to be fiction, I thought it was unbelievable that this could happen to me. I just wound myself up into a frenzy and became really anxious about it all. At the time I was in a relationship, I thought was quite serious, but after my diagnosis, neither of us coped with it very well, so we separated.
Thank goodness we did, because I would never have met my partner or had my 2 children, Daisy, 11 and Eliott, 7. They are wonderful and really understanding about things. Daisy even reminds me to put my gloves on when we go out.
I suffer from chronic fatigue and joint pain, severe reflux and secondary Raynaud's. One of these symptoms if it creeps upon me is difficult enough but if they all decide to visit me at the same time, it can be so debilitating.
I work for the NHS as a juvenile nurse for children with disabilities and long-term conditions. It involves, long hours, attention to detail and some heavy lifting. I love my job but with increasing problems with my health I have had to make some very tough decisions. I have handed in my notice at work, because I can no longer cope with the hours, responsibilities and look after the family as well. My family come first and as they grow are going to need my help more, so I need conserve my strength to be able to focus on their needs. It was a very tough decision to make but sometimes it's about making choices for life not just the immediate future.
I also have some planning to do. My partner and I have been together for over 12 years and we've decided to get married. We're going to hire out the local village hall and invite family and friends, but because we've decided to do it really quickly, I've only got 6 weeks to arrange everything!
My family and friends are very supportive of me and recently, since Daisy did her charity chop, I've opened up to school. I think people thought there was something wrong with me because of all the appointments and feeling unwell a lot of the time, but I just tended to get on with it and not really talk about it. My social life has definitely suffered, I don't have the energy to go out with friends when I'm invited and I'm usually in bed for 9pm, just like one of the children. My reflux and joint pain can keep me awake at nights so it's good to try and get ahead of the game.
I stay positive with the support of my family, especially my children, they really are what makes me function and get out of bed for in the morning, I don't know where I would be without them.