ME sufferer
 		Lauren

Age: 20

Diagnosed: 1997

I had just turned 12 when I first started to feel ill. For months I assumed it was a succession of bug and viruses, Glandular fever was brought up as a possibility. It was only on looking back that I realised I wasn't "shaking this off", so we returned to our GP who referred us to a local paediatrician. In retrospect this was a big mistake. Isn't it shocking that when ill, going to a doctor could be the worst thing you do?

After a brief physical examination I was declared physically perfectly healthy and that all my problems were to do with stress and pressure placed upon me by my parents, the school and myself. Ironically she also declared that the only way to return me to normal was to apply pressure and force me to school, even on the days I found it incredibly difficult to make it through getting ready.

Following her advice we pushed even harder than we already had been, struggling into school, to keep everything up as normal, yet I seemed to be getting worse and worse. The days where no matter how hard I tried I couldn't manage school were getting more and more often.

We saw the paediatrician one more time, where she conceded I'd had glandular fever at some point in my life but from her brief examination I was still perfectly healthy. She rather vaguely mentioned chronic fatigue but hastily added it wasn't helpful to use labels and left us to flounder with no real information, help or understanding.

Thankfully, not long after that, we were given a leaflet about M.E. by my school nurse. I had never heard of it before, yet the leaflet described perfectly everything I was feeling. I remember one quote was that it felt like there was a giant vacuum cleaner above your head, sucking all your energy and strength out. It was a big relief, until then I hadn't been able to describe how I felt and yet here was a leaflet putting it into words so clearly. It was also a big relief to know that, contrary to how I was feeling, I wasn't the only person in the world to be feeling ill in this way.

My dad promptly rang the charity that produced the leaflet to find out more and they gave us the name of a specialist paediatrician in Durham. We requested that our GP refer us to him and within a week we had been!

Upon entering the room the specialist looked us up and down and said "Let me guess-white, middleclass, only child, pushy parents?" He'd heard our story, and the first paediatrician's attitude, many times before and apparently we were the lucky ones to have only had that!

Upon a full history and listing of symptoms he gave me a diagnosis of "classic" ME. His advice was to pace and know my limits. I could recover soon, or it could take longer, there was no way to know.

That was over 6 years ago, I'm now 20, still ill, and a lot worse than I was then. I gradually had to cut back on school and then when I was too ill to go in anymore I had home tutors (which we had to fight the LEA for). The tutors at first came for a few hours a week, as I couldn't manage much, but that dwindled with my health. Over 4 years I managed to complete 5 GCSEs, taken at home, all A-A* grade, despite collapsing half way through one of the maths papers!

 

Over the years we have spent thousands of pounds and travelled hundreds of miles in the search of something that would help. The specialist paediatrician I saw was at the other end of the country and I travelled to Hertfordshire to see a homeopath and then a Chinese herbalist on strong recommendations. I've seen numerous people practicing various alternative therapies, from the scientifically based to the wacky, from doctors' offices to peoples' front rooms. I've had injections, potions, herbal drinks and pills. Nothing has helped. The best was a doctor in Southampton who did numerous blood tests (all privately and at great cost) and was able to tell me that my magnesium, zinc and vitamin B levels were very low, something which despite many blood tests the NHS had never told me.

I'm now housebound 99% of the time and bed bound a lot. When I do manage a trip out it has to be in a wheelchair as I can't walk more than a couple of steps unaided.

 

It's hard to describe what ME is like, many people have done it better than I ever could (see the links page), it's easier to say how it's affected your life. How you've lost out on schooling, how your social life and most of your friends disappeared many years ago, how exhilarating it is just to stay downstairs for an hour without feeling like you're paralysed as a result and how wonderful it is to see a true friend, who comes to see you even though you cant go out and can't always hold a conversation.