Nicola
Besides the nausea, migraine-like-headache and familiar gurgling feeling in the bottom of my stomach, I mostly felt disappointed when I woke up this morning. I knew exactly what was happening, as it had happened exactly the same way so many times before. I had gone 7 months, to the day without being sick, which, in 16 years is a new record for me. I had begun to live a life entirely untainted by the thought that I might be, or furthermore would be sick on a regular basis. In 16 years, I had previously never been able to take health for granted. During these last 7 months of health, all of those years spent with my head in a sick bucket, or with a canula attached to my arm in a hospital bed, seemed a world apart, as though they had happened to somebody else. But this morning, curled up in one corner of my bed, covers pulled over my face to block out the light which seemed to taunt and distress me further, semi-consciously tapping my left foot in order to distract myself from the intense nausea, I was reminded of the illness that not so long ago, had dictated my whole life. Creeping upon me like a thief in the night, I would wake up in the early hours of the morning feeling intensely sick, no matter how well I had felt the day before. There would be no warning, no way of knowing whether or not I would be able to so much as get out of bed the next day.
It’s difficult for me to decide which was worse; the intense feeling of nausea which rendered me to be unable to think of anything else – it took over my whole brain leaving little room for any other thoughts or feelings, stopped me from sleeping, stopped me from being able to so much as lift my head up off the pillow or to even listen to or watch the TV – or, on the other hand, the actual vomiting. Once I have been sick more than once I am usually sick again and again and again. Unlike most people emptying my stomach doesn’t get rid of the feeling for the need to be sick, and for 24 hours, and sometimes much longer than this, I would throw up anywhere between once an hour to once every five minutes. Being sick so frequently, with an empty stomach also had its consequences. The stomach acid eroding away at my oesophagus and the pain this caused, and the taste of blood and acid in my mouth is something that I will not try to describe. My teeth have now lost most of the protective enamel on the backs of them, due to being sick so much and the acid damage. Spending days in bed being sick often caused me to pull muscles in my stomach and also (I apologise if this is too graphic) affected the workings of my bowel, and as a result I came to have Irritable Bowel Syndrome as well as the CVS.
During the worst years of my illness I spent nearly as much time being sick as I did well. It was not uncommon for me to spend one week at school, and the next in hospital, and the cycle would repeat itself. Some teachers found this very difficult to understand, that my illness was as predictable as was the fortnightly school timetable, and I’m sure that certain teachers that I rarely saw, thought it was some strange ploy to get out of their subject.
When I was 13 years old, 7 years after this strange illness became such a prominent part of my life, I was diagnosed with CVS. After seven years of being told things like, “it’s just a virus”, “there’s nothing physically wrong”, or “it’s all in your head” by some Doctors, it was a relief to meet a doctor who had heard of other patients who had experienced the same symptoms I had. That it was a real illness and some doctors took it very seriously.
I consider myself extremely fortunate that today, I have only been sick a couple of times. After a couple of hours of lying in bed trying to ignore the feelings of nausea I was eventually able to fall asleep, and when I awoke several hours later the nausea had subsided enough for me to be able to get out of bed, sit up, and look at a computer screen. I still have a bit of a headache and my stomach is restless, for want of a better word, but I know I’m going to be ok. I know I don’t have to look forward to a night of no sleep, a bucket by the bed, and throwing up every 5-15 minutes throughout the night, and severe dehydration the next morning. A year ago, this was something I could expect on a monthly basis and two years ago on a weekly, or even twice weekly basis. It would seem that, although this illness has not gone completely – today was further evidence to me that I will probably still get occasional days of illness and that I should never take my health for granted – I am “growing out” of this condition. My episodes are less regular, and although they can still be as intense (though today’s definitely was not), they are much shorter, typically only lasting a couple of days rather than over a week. I feel like my condition is manageable and these days I barely have to even think about it, which is something that, during my teenage years I had little hope of believing would be possible.
I would like to add that the biggest comfort to me during the years I was quite ill, were my friends, my family and my faith in God. The people closest to me have always tried to be understanding and saw me as a person, rather than just somebody who was ill all of the time. My parents took my symptoms seriously and sought second opinion after second opinion until we were finally taken seriously, for which I am eternally grateful. My friends stuck up for me when other children, and even teachers at school misunderstood my situation and treat me with some unkindness due to their fear of the unknown. They became experts at recognising when I was about to have an attack and sought help for me. Some of them even saw me to the toilet and held my hair back for me while I was being sick, or helped to clean me up when I made a mess of myself. If you have ever been sick in a public place, or, more specifically, in a secondary school full of teenagers who can be very critical, you will have an idea of what this meant to me. One friend even wrote to me regularly when I was off school most of one year, so that I wouldn’t feel left out and could keep up to date with what was going on.
I hope this brief description of my experiences will be of some use to others who have, or are suffering with CVS, and also to people who have no experience or little understanding of what CVS is and how it may affect a person’s life.