My invisible illness that I never talk about

This post is slightly different to what I would normally blog about, as I'm kind of trying to raise awareness for something that barely anybody even knows about. An illness that only affects only 1 in 100,000 people. An illness that I never realised had such an impact on my life, my childhood, my mental state and who I am today.

So this illness is called Cyclical Vomiting Syndrome, and it's basically that. Some people refer to it as "Stomach Migraines" and it's basically re-accruing episodes of sickness, that can last from a couple of hours, to weeks. There is no cure, and no reason for it to happen. For me, it started when I was about 5 years old, and I was told that my triggers were stress, or being too excited, or anything that was "too much." For the first 5 years, I was in hospital on average for one week out of every month. So I would be violently, throwing up, starving, becoming hydrated and then I would only have about 3 weeks being myself, before it started all over again. The whole time I was at middle school, I was missing time off of school, I wasn't allowed to go on some of the school trips that involved staying places over night and my friends used to all do stuff that I could never be included in just "in case" I got sick. Which in the end resulting in my friends kind of pushing me away, they all grew closer bonds that I was able to with any of them. They were all confused by the fact that I would just go for a week and then come back expecting to still be part of their friendship group.


I always used to be able to tell when I was getting an episode, as I would start to get these horrendous headaches, that were just different from normal headaches. I can't even recall what they felt like now, but I remember them being painful, and they would make me scared because I knew I had to go through the whole process all of again. Once the sickness started, for me it was always severe. I was lucky if I would get a couple minutes to breath in between sickness, and the feeling of it would make me feel like I needed to gag, to get rid of the sickness feeling. Normally after about 24 hours of being sick, my mum would call the ambulance. Being unable to keep anything down, I was always admitted straight away, and put onto a drip and giving a harsh course of anti-sickness drugs. The ward that I stayed in at the hospital, made me feel really safe. I was there so many times, and all the nurses came to know me, and they would all be disappointing to see me in that hospital again. Sometimes other doctors would hear I had been admitted and just come and check in on me because they were so used to seeing me. Most of them were really kind, but when the doctors and nurses have no idea what's wrong with you, it just makes it even more scary.

They wanted to do loads of tests on me, I was kinda young to remember them all but I know they did loads of scans and blood tests and tested me for things that people haven't suffered with for 100s of years. They sent me to see a stomach specialist, and even at one point told me i had anorexia. checked all my organs and it was only after years of it happening and the doctors researching that they decided I have CVS. People are only just started to raise awareness of this now, but I was suffering with it 20 years ago when even the doctors were clueless (some of them still are.)

During my stays at the hospital, I was put onto a drip to help with my dehydration. Then they would try and give me all sorts of medicines to stop the sickness, but it normally would take about 2-3 days for it to completely stop. The anti-sickness that they still use on me today, is the one that they give to cancer patients who are going through Chemo. They always act so shocked that when they give it to me, it doesn't stop the sickness straight away. When I get into this state, laying in a hospital bed, hurting all over from being sick, feeling hungry and dehydrated and half dosed up on meds, I literally sometimes beg the doctors to take it away, to stop it hurting, to make me better. The look that I give, is desperation to just not have to have to illness. I have to fight through this every time, go from a completely normally healthy person one day, and the next ill be unable to move and a complete mess and have to deal with the sickness until it decides to go away, and then I have to get my body going again. When I was little, I used to have to take short walks around the ward towards the end of my stay, because my legs would go to sleep and I would have to wake them up again, I would have to force my mouth to chew food because for the past week it's been unable to do so..

After the first 5 years, the I slowly started to outgrow this syndrome, I would still get ill, exactly the same way as before but it was only happening 4-5 times a year, instead of about 10-11. One time when I was in year 9 or 10, me and some of my friends went to Thorpe Park for the Halloween event, and it was honestly one of the best nights I can remember having, but I enjoyed myself so much and my adrenaline was pumping and the next day I became sick. I couldn't even have too much of a good time without getting sick and everything I did I was worried that I was going to take myself too far or do something that would trigger my sickness. Being an emotional person anyway, I defiantly get ill most of the times from stress, but I know for a fact on occasions it has been good emotions that have started my sickness too.

The past 10 years, my sickness has calmed down a lot. I still get an episode at least once a year, with my last one being a couple weeks ago but for the past few years my sickness has been stopped within 2 days so I'm kind of glad I don't have to deal with it for so long and so frequently. Now I don't really talk about this much because 1, being sick is gross! 2, people just don't really care because it's unheard of and people just think of it's a bit of sick, but honestly it's a really painful and emotionally and physically draining process to have to go through and 3, I believe this is the reason why I lost track on my life growing up. When I was a little girl, I loved maths and R.E was my favourite subject, I was active and happy and up for doing anything. And now - I hate maths, and religions. I hate being physical, and I'm too scared to do most things now. It's affected my relationship with people, my relationship with food and stopped me in the process of learning and growing up. So this illness has completely changed me as a person, and one day I know I will find a way around it, but until that day comes I have to keep dealing with this.

If you want to learn more about CVS or help raise awareness theres a facebook page you can follow, its a closed group so you will have to be accepted but it currently has almost 10,000 followers

https://www.facebook.com/groups/cvsgroup/

Also you can learn more here or help spread the word 

http://www.cvsa.org.uk



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