• Jen4 - My Story

    I had a pretty busy life before ME came along. I went dancing four times a week, played in various orchestras and bands and went out with my friends. I wasn't a very 'ill' person. I'd get viruses now and again but usually I'd still go to school unless it was really bad. I don't like to be stuck at home!

    I first noticed there was something not quite right in October 2003. I was sitting in English one day and my stomach started rumbling really loudly! Very embarrassing but I just put it down to being hungry. The thing was I wasn't hungry and from that day on my stomach just felt constantly wired. I'd get pains, feel sick and it generally just didn't feel right. I saw the doctor a couple of times but at the time he just thought I was being a bit too conscious of a rumbly tummy!

    Mum and Dad actually noticed other symptoms before me! I started to go to bed earlier and became more lethargic. In December 2003 I went on a school trip to Bruges (by ferry) I was really ill on the ferry but I just put it down to sea sickness. I just felt really ill all day - dizzy, sick, tired, hot one minute and freezing the next. Again, I just put it to the back of my mind and tried to have a good time. Back at school I was getting more and more tired - I thought it was just the Christmas excitement and stuff!

    I wasn't particularly well over Christmas and on January 2nd 2004 I went back to the doctor. We decided to see if I was allergic to any foods so I began to cut things out of my diet - dairy, wheat etc. But no luck - I was feeling even worse. I was losing my appetite and I all I did was sleep all day. So back to the doctor it was! This time he did some blood tests and a urine sample. Blood tests are easier said than done with me - my veins collapse easily so actually getting blood can be a long and painful process!

    All the results came back negative, which was actually really unhelpful because I felt awful! So my GP referred me to a gastroenterologist (They do stuff like stomachs, bowel, intestines) He did a Barium meal, ultrasound and yet more blood tests. The Barium meal tasted awful - if you ever have to have one don't believe them if they tell you it tastes of strawberry! It tastes more like chalk - Yuk! Anyway all these results came back negative, again. By this time I was getting fed up. There was something wrong and I wanted to know what! The stomach guy was going to do a colonoscopy (Camera looks inside you) but he said the risk of tearing the intestinal wall was too high and he didn't think they'd find anything.

    So, back to my GP. He referred me to a pediatrician (Children's doctor) She sent me for an MRI brain scan which was very noisy but came back normal. I also got referred to a dietitian and a psychiatrist as I had lost a lot of weight.

    After seeing the psychiatrist and the pediatrician they both decided that I had ME. But they also wanted to treat me for an eating disorder and depression. I'd never even heard of ME and I still can't really understand how it works - I refused to believe I had it for months before I finally accepted the fact. I just don't understand how I can feel like this yet all tests say I'm fine!

    I'm going into school for an hour a day but it's probably the hardest thing I've ever had to do! I get really tired very easily but I'm desperate to be a doctor and I love to see my friends so I will keep trying.

    A lot of people think that ME is either 'all in the mind' or 'just tiredness' I'd like to make a point - it is neither of them! There is physical medical proof that ME sufferers do have physical symptoms and research is being done. And there are many more symptoms - not just tiredness. For a start the tiredness is so extreme that it is not like normal tiredness. It cannot be got rid of by sleep. There are so many strange symptoms including pain, swollen glands, insomnia, memory loss, hair loss, affected mobility, cognitive problems... the list goes on. I still get new symptoms now! I've had 2 ECGs because of tachycardia (rapid heartbeat) and still have blood tests but not as often. I have an ultrasound appointment soon for another look in my tum - the symptoms just keep coming!

    Joining support groups has really helped me feel like I'm not alone. I just hope that more people will begin to accept ME as a proper physical disease and that more research will give us some answers. So many people suffer from it, and a great deal are young people. It ruins lives and often runs hand in hand with depressive illnesses because it is such a strange illness it can be really frustrating and upsetting. Sometimes you can barely move - it can be very scary sometimes and I just wish that one day there will be a cure for it. But until then I will keep trying until I can feel normal again.