"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.
(…) 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 (…)
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."
To read the rest of Allie’s story about living with Post Viral Syndrome, click here…
{ 2 comments… read them below or add one }
Hello, I’m not sure how long ago this story was written or how to see other comments, but I feel i can relate to your story an awful lot. I got ME/CFS just after GCSEs and one thing I hate about it is the fact it stops me being me, and I worry if people will be offended if I cut conversations short. I still get quite emotional when I explain CFS, I can’t help it.I used to avoid talking about it for that reason which I now wish I hadn’t. I’ve since realised its all about awareness, and if we dont raise it, who will? Thanks for your story, I wish you all the best hope you get to read this
You’re comments sound like me, I was diagnosed with PVFS while in the hospital in the progressive care unit, where I ended up following a stomach flu-like illness, was there for 7 days, undergoing every test you can think of and had neurologists, cardiologists and then an endicrinologist was consulted. I never got better after the illness, turned very pale, bad chest pain, strange headaches, light, noise and motion sensitivity, legs would buckle, literally was bed bound for several months. Also had trouble maintaining my blood pressure, was also diagnosed with hyper-adrenergic hypotension. I couldn’t concentrate on what people would say, I couldn’t remember things and I didn’t want to be around people for some time, but needed too because I was so ill. I have recovered a good bit since May of 2008. I have relapsed though, I tried to train for the half marathon I had run the year before and relapsed not as severely but it is taking me longer to keep ahead of the fatigue. Symptoms: when I’m fatigued, I also have heart palpitations, some times a slight or severe headache, IBS symptoms and anxiety despite my efforts not to give in to the anxiety, it’s like a CNS deficit and I can’t stop it. Some of my family is supportive, others avoid me because they think I’m emotional. I used to be involved in so many things and now can barely manage day to day routines. I have faith I will get better and hopefully recover fully. This has indeed been a wake-up call.