Allie's Story, Post Viral Syndrome Sufferer, UK

I have been diagnosed with a Post Viral Fatigue but it really isn't as serious other sufferers...

I had a flu-like illness in Feb 2004, and thought nothing of it. I passed out a few times and became very tired, so took it to the doctors. I thought I might be anaemic since I 'm a vegetarian, or I thought I might have Glandular Fever as I had a few friends suffering with that.

I was sent for a variety of blood tests, urine tests, x-rays, tests for rheumatoid arthritis etc. The only anomaly was a raised ESR in the blood test. ESR is the erythrocyte sedimentation rate, and basically they stand your blood for an hour and the ESR is the number in mm of the separated bit. It's a fairly non-specific test with a variety of implications.

I tried to carry on with school and ended up doing 2-day weeks which was fairly impractical, so I arranged to go to 3 lessons a day, which worked fairly well, although I was still fairly drained. I arranged a doctor note to the exam board and I got through my GCSEs with 5 As and 5 A*'s.

Over the summer I became much better and was basically living a normal life. I got a referral through from a specialist but turned it down because I was basically better.

Over the last few weeks I began to feel incredibly tired and week, and picked up a variety of infections from various sources. I went back to the doctor who told me that it was probably a relapse and I'm likely to have many more, although as time passes they should become more spaced out and not last for as long.

Most people have been fairly supportive, and I know in comparison to most people reading this I'm probably fairly active. I'm definitely struggling with my school work and all the extra curriculars I usually do. I've had to let the extra stuff slide and I still struggle with school quite a lot.

I find it really hard because I'm used to being little miss energy. I want to be a doctor and I feel I need all my extra curriculars and work experience etc, but my doctor basically said I'll have myself in a state of collapse if I even try.

I find that I need a nap every day, and if that's upset I feel absolutely terrible.

At the moment I'm working on improving my diet, because my natural reaction to feeling knacked was to eat crappy high energy foods, but this really wasn't long term helpful. I find that I get really sensitive and if I'm tired anything anyone says to me makes me cry, but I don't feel especially upset, I just cry.

I find people saying that 'I'm lucky because the school treat me leniently and allow me to sleep / go home and are more understanding about my work', irritates endlessly. I would rather be like everybody else and do all my work than what I have instead.

I feel so misunderstood. I hate the idea that people think I would use my illness to get out of things or that I'm making it up.

I also find it very hard to explain that I have a Post Viral illness. I had to explain it to each of my teachers and every time I started crying. I never mean to, and I know I can deal with it, and get better, and that many people are in considerably worse situations. But, it just happens.

I feel quite antisocial because I can't find the energy to keep a conversation up, and people make me cry so easily. I hate not being able to go to all the social things I enjoy.

My boyfriend has been very supportive, and is very good about getting a balance between caring and treating me like a normal human being. We find it very special to just spend time together asleep. I'm not convinced he does as much sleeping as I do, but he's very good about it and I appreciate it no end. And I find that with a decent amount of sleep I can cope with a reasonable amount of activity and we achieve a good balance.

My dad was fairly sceptical at first, but he's come round a lot, and is very good to me. And my mum has also been very understanding. My best friends missed a bit to start with because they're not used to me being so sensitive. But they'be been great too.

My doctor has also been very supportive and helpful. I'm not sure I fall into the same category as the Post Viral Fatigue in this Sleepydust web site, but I admire and respect all the sufferers on here, and I hope your situations improve, lots of love, Allie xxxx

Thank you Allie, for sharing your story with us.

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