The first time I knew something was wrong was three years ago, when I almost got run over by a car. I was 15. I'd got off the bus from school. My mum was waiting for me down the lane and I walked across the road, straight in front of a car. It was like I wasn't there; I felt numb. The car screeched to a halt, and I carried on. It wasn't until my mum asked me what I was doing that I realised I could have died.
When we got home, I remember crying and shaking and screaming uncontrollably because I didn't know what was happening to my body. I was exhausted, my stomach hurt, I had a terrible headache. Which just wasn't like me. Before, I'd been really active and outgoing. I'd been into long-distance running. I was the typical teenager - going out, babysitting, doing all the teenage things.
Looking back, I'd say the illness had started a couple of weeks before that. I'd gone to hospital with bad tummy pains, which the doctors had initially thought was appendicitis. It wasn't, and I was discharged from hospital. To begin with, I seemed to get better; but when I went to school for the start of the summer term, I lasted about a week.
My sleep was really badly affected. It got to the point where I wouldn't be able to sleep until about 4am, and then I'd be unable to get up the next day. The mornings were such a physical effort - even to get dressed and washed felt almost impossible. I'd be able to rest a bit on the bus to school, and at school I'd struggle on and try and do the work with my muscles hurting so badly.
At the beginning, I managed to go into school a bit, but I was having to force myself. I'd put on a face and try to smile. My friends would be talking about boys and so on, but I couldn't care less what they were saying to me; I was in too much pain to be interested. I'd pretend, but I never let them know how I felt because I didn't want to upset them. I didn't want them to treat me as different. I worried that if I moaned too much about my illness, they wouldn't phone me.
Before too long, I wasn't strong enough to go to school. The teachers were sympathetic and, because they knew what I'd been like before, didn't think I was putting it on. It was different with the school counsellor, though. She just made everything worse. She talked about my family. She asked if I was enjoying school. She was trying to dig into other reasons, and this really hurt. I knew that it wasn't anything to do with my childhood. They were suggesting things and I had to fight to keep hold of my own beliefs. But it was tempting to want to believe what they were saying, simply because I wanted to be better.
Throughout this time I kept going to my GP. She took blood tests to see if I'd had glandular fever. She was sympathetic, and gave me painkillers, but these didn't do any good. At one point I was on six a day, and all they did was numb the pain a little.
My family have been great, though. I remember when my dad realised for the first time that I was in a bad way. I'd been on at him for weeks to make me a picture frame and one day we finally went down to the wood yard to do it. We were getting the tools out and I just broke down. I felt exhausted. I couldn't cope with doing even this simple task.
In December 1997, I was sent to a paediatrician. I described all my symptoms, and he said they didn't add up. The next day he called my mum at home. My dad and I were listening on the other phone and heard him say that there was nothing wrong with me - I should just get on with my life. Being treated this way left me with such a lot of anger, and I did a picture of how I felt. Since there seemed to be no way of describing to people how it felt to have rods of iron down my spine, I began drawing and painting how I felt instead. The pictures are not nice to look at - because the feelings weren't very nice either. Painting has really helped to let that anger out and show people a bit more what I feel. People can now look at them and see what I've been through.
I'm now doing my art full-time. I started at Hereford college of art and design last September and, although I've only been in for a total of one and a half days, they've been supportive. There's a tutor who lives in Hay who drops in to check on my work. It's given me something to aim towards. Plus it's something that I love doing. The upcoming exhibition is my first.
After the episode with the paediatrician, the school doctor came to see me at home. He was the first person who admitted that it might be ME, or chronic fatigue syndrome. That was a huge relief - I finally had a name for my illness. I knew that people might now believe me and not think that I was just making it up.
Then we got in touch with the ME Association and my mum read all their books. I didn't. I worried that if I read the books then I'd be accused even more of making up my symptoms. But reading the material helped my mother. She was able to understand why this once smiley, laughing daughter wasn't getting up in the morning, and was spending all her time in a chair, unable to walk, in constant pain, with insufficient concentration even to read a book.
It's only in the last year that it's started to get a bit better. I've been able to walk across a couple of fields without having awful after-effects. I'm still in pain, my muscles hurt pretty much constantly, my face feels like it's being eaten away by maggots. But it's made me a stronger person. I appreciate life more. My advice to anyone suffering from it would be: remember that you are going to get better; that it's the illness that's making you ill, not you. Rest as much as you can and don't overdo it because you'll pay for it in the end. Keep smiling and hope that you're going to get better. Who knows, one day there may be a magic pill.
