I think the journey to my diagnosis was quite complicated. From about age six, I had what the doctors deemed were growing pains. It started in my ankles, then went to my knees. I was getting more and more pain, the fatigue was getting worse. The flare up I had very quickly took over my body so from the neck down I couldn’t move. My hands were locked in one position. I was carried everywhere or put in a wheelchair. The doctors did decide to give me oral morphine. Basically something to numb some of the pain you’re going through. And I still have some days I have to turn to things like oral morphine and tramadol.
Very very strong painkillers to deal with the amount of pain I’m in. I was someone who had their whole life kind of planned out for them in terms of I knew exactly what I wanted to do, how I wanted to do it. I was head girl at my school I was doing my music college auditions to doing nothing because I couldn’t My parents had to feed me, dress me, take me to the bathroom. There was a sense of embarrassment that it had happened to me. Why me? Why did this happen to me? I have done everything right. I don’t think people realise how much of a life-changing diagnosis this is. When I look in the mirror, I see two different people to be honest. When I am singing, performing I am one person then the person with no make-up, stripped bare the arthritic side of me is another person And it’s quite hard to merge the two. I was always the girl with the long blonde hair. I was put on methotrexate which led to me being sick every day I lost most of my hair the day before my first A-Level In the shower one day and the bit I was shampooing just came out in my hand I was madly pulling at my hair and it just kept coming out I was thinking ‘oh my gosh, I didn’t expect this to happen’ There are options the NHS can provide you options if you want to go down the route of wearing wigs.
I know it sounds very, very difficult but do not stress. Stress can actually cause more hair loss and I kind of wish I knew that. There are a lot of supplements you can take that will increase your hair growth, so look into them. I got advice from the place I got extensions from, about what supplements to take. There are lots of options but I think the most important thing, I know it is such a distressing time and believe me, I was so upset about it but stress does make it worse. So try not to stress, there are solutions. I think to date the most exciting event was singing the Welsh national anthem for the Welsh football team. SINGING And they said ‘we have got 17,000 people in the stands today’ and I was like ‘ok, that’s a lot’ and my Dad turned to me and said ‘oh yeah, and the one million people who are watching on Sky’ Having the diagnosis has opened my mind to so many other career options teaching, doing music therapy even working for a charity such as Arthritis Research UK. I think it has actually broadened my horizons and I think you have got to let it broaden your horizons and not be so headstrong but, you can still keep those same ambitions.
As found on Youtube