My E.D.S. Story

I was born premature, with a hole in the heart and 2 inguinal hernias. I suffered my first dislocation (elbow), aged 18 months and spent much of my childhood having chest x-rays, broken fingers (and nose!) and numerous infections.

I was always tired and in pain. When I was younger I didn't say so because I didn't realise it wasn't normal to hurt so much, but as I got older I spoke more about it and began to be gently teased and chided about my 'hypochondria'.

Even so, I was fairly active for someone with my medical history. My stamina wasn't good and I didn't like outdoor PE in the winter, but I loved swimming and cycling, so I did that a lot. At one point in my early teens I was swimming about 3 times a week! I was even able to swim distances of over a mile in an hour or so!

As I hit my early teens though, I began to get very, very tired. And the aching increased a lot. Sometimes at school my legs would just give way, and many times I fell down stairs, leaving bruises and grazes all over me.

I took a job as soon as I was 16, and worked 20 hours a week as well as 25 hours of school. Nowadays they don't recommend school-age people should work more than 8 hours a week, but there was no such official stance or guideline 8 years ago! I began to ache even more, and when I wasn't at school or work I was asleep. It got to the point where I would cry in the mornings when I got out of bed for school or work because I was so tired and it HURT to put my feet on the floor and bear my weight. At this point, being 5'2" and at school still I was still wearing high heels because it was 'sad' not to.

Eventually I quit my job to take my GCSEs. When I started 6th form I was well rested and feeling a bit better. But it all went downhill when my boyfriend got glandular fever. I was tested too, but it was never found in me. In the process of being tested, I had a doctor suggest to me that this tiredness was just depression, and really it was all 'just in my head'. I was devastated. Then, at 17, they found something.

I'd always had stomach problems, stomach aches and upsets, and not being able to eat a lot, acid reflux etc. and at one point my Dad suggested to a doddery old doctor that maybe I had a hiatus hernia? The doctor scoffed and said teenagers didn't get those. This was the same doctor who said the hernias I'd had as a baby wouldn't hurt, as babies didn't do anything, so didn't feel pain (turned out one hernia was wrapped around an ovary, and according to the surgeon, was probably agony for me)! Six months after this conversation I was given a chest x-ray, and the radiographer was disturbed by the result.

I had half of my stomach and some intestines in my chest. I was rushed in for more tests and, 6 weeks later, surgery. By the time I was operated on, my entire stomach, lots of small intestine and part of my liver had drifted up into my chest. My diaphragm had ruptured entirely, and I hadn't noticed (now if that's not a high pain tolerance I don't know what is)! I guess it was because I was a classically trained singer, and I had been stretching and exercising my diaphragm for years, so when I got pain there I just thought it was cramp.

Anyway, they operated. And it went wrong. They cut an artery behind my liver. 36 hours later I was completely out of it and being given blood. They decided to operate again to see what was wrong. In my more lucid states I refused the operation, but I was told by my Dad if I didn't sign the papers, he would. So I signed (well, I made a mark on the page before I passed out again!). The problem was found and repaired, and the surgeon went as far as to say that at the time of the second surgery I probably only had a few hours left without intervention. In total I was given 8 units of blood (3/4 total body capacity). They gave me codeine for the pain, but it turns out I'm sensitive to it. So my internal stitches burst from the amount of vomiting I was doing (despite only being on a liquid diet). This meant I needed another operation.

After all of this, I was bedbound and exhausted. I couldn't walk more than a few steps and then needed to sleep for hours. Because I couldn't eat, my weight plummeted to 6.0 stone and I looked skeletal.

After 3 more months of this, and the original symptoms that started all the tests, persisting, I had to go back to the doctor again. Again she implied it was all in my head, but agreed to send me to an endocrinologist.

After only 30 minutes with him I was diagnosed with CFS, or ME. And was told I needed to make lifestyle changes. I was told to take a year off school. I refused, as getting my A Levels was very important to me. But I agreed to only do half days. A social life was out of the question too.

So at 17, I pretty much lost my life. I managed to get my A Levels on only part time hours, yet I still took them at the same time as my classmates. I even got an unconditional offer for a university place!

I did my degree, although I had to drop out of 3 classes and retake 1 in the summer. I also took the 2 remaining classes in an extra 6 months at the end of my degree. So it took 3.5 years to get my degree, but I did it! In my last 18 months, feeling a bit better, I decided to rekindle my love of the stage and joined a theatre company. In the second show I did with them, I met my now boyfriend of 2 and a half years.

Just before this, aged 21, I visited an ME message board, and someone was describing all their health problems. She sounded like me. I asked her some more stuff and told her about my issues, and she sent me the link to the EDS Support UK website and told me to check it out immediately! I did, and was shocked to see my entire medical history laid out on screen before me. A visit to my new (and sympathetic) GP and a referral or two later and I was at an eminent Proffessor's clinic. The Prof himself was very rude to me, but his colleague was wonderful and diagnosed me with type 1 Ehlers-Danlos Syndrome. He didn't recommend pain management for me, as he said it was obvious I was in a position where I couldn't be helped, as I'd done it all myself already. He recommended I went into pain management and CBT as a career, something I'd already considered. I'm now pursuing that.

Still being quite ill, I took a year off. Burned out, I didn't want to study or work. I spent most of my time staying at my boyfriend's flat and doing nothing. Eventually this got boring, depressing and frustrating. The CFS/ME symptoms began to improve, so at the beginning of 2005 I took a part-time job. Off benefits and out of the house every day made me feel so much better about myself and my life. So much so that I applied to do postgraduate study and was successfully accepted! I started the course in Psychology at the University of East London in September and now only have 1 semmester to go!

I'm still tired, and I still ache, but I make myself do a little bit every day. I swim with my boyfriend whenever we have time (he runs his own company, so is a very busy boy!), and I am doing gentle pilates whenever I feel particularly stiff or achey because the stretches actually help. I am doing gentle physio therapy, and have occupational therapy for my hands (my most hypermobile part - boy is writing all this killing me!). I was seeing a podiatrist, but he was a bit unsympathetic and told me I had to get wider shoes to fit the orthotics in - even though I have skinny feet and normal shoes fall off me!

I inherited from my Dad, who's Mum was affected. However I'm the first person in the family to get a diagnosis - the pattern of heredity seems quite obvious though. Whilst my Dad, Uncle and little sister (17) all have 'characteristics' of EDS like lobeless ears, super-soft skin, hypermobile small joints and a complete intolerance to anaesthetic, none of them have had nearly the amount of problems I have had, although my Dad has had 1 hernia.

For me it's all about pacing. With now mild CFS/ME I still have to be careful not to overdo things, and I sleep more than most people! But I do what I can and am getting back my life, slowly, but it's coming. I lost 7 years and at times it was very dark, but now I do feel like I can see the light at the end of the tunnel.