What is CVS you may ask.

So I am new to this whole blog thing so I do apologize in advance.

Yes, I suffer from CVS. It is a very rare syndrome referred to as Cyclical Vomiting Syndrome. I have had CVS since I was just a few months old although I had to go to London to be diagnosed with it when I was 7. I most commonly just refer to it as migraines to help people understand them better although it consists of much more than just that, an attack could include severe nausea, vomiting, dizziness, dehydration and complete physical exhaustion. One attack for me generally lasts about 48 hours although it does vary from person to person with this syndrome. In between these attacks I am and appear to be perfectly fine, I can do most things that other people do, it is when this attack suddenly hits that appears to be the problem and I never quite know when these attacks may hit.

I always used to get told that I would outgrow them when I got older although here I still am 20 years later. These attacks occur on average once a month, sometimes more, sometimes less. Over the years I have found that stress (positive or negative) is a big cause for CVS. If I get too excited for something then I will most likely get an attack on that day such as the day of my matric dance which is why I missed it. Stress for exams or a big test could also cause an attack on that day. Over the years I have learned to try and control my excitement and stress levels although it is always a constant worry of mine as I really do never know when an attack is going to hit so going away sometimes becomes a stress wondering if I will have an attack while not at home as it is a very rare syndrome so like I have mentioned many people don’t know about it so therefore don’t actually know how bad an attack can get.

Getting to hate a hot day on the beach or a hot day hiking a mountain are also things I have started to become far too familiar with. Constant exposure to the sun and heat can also bring on an attack especially if I don’t drink or eat enough. Bright or flickering lights are also something that could possibly trigger an attack. These are just a few of the things that are possible causes of an attack.

I have been on so many different kinds of medication but none of it seems to help. I have tried to cut different foods out of my diet to see if that may have an effect but that also did nothing. I do sometimes take something to help me sleep during the attack but other than that I never take anything else.

You may be wondering what happens during these 48 hours and what do I do then if medicine doesn’t help. Well during these 48 hours I need to be in a dark cool room, I generally won’t be able to eat or drink anything over those 48 hours as well. All I really do is just have to sleep it off although it does get very painfully unpleasant and there honestly are no words to describe how I am feeling during an attack, I honestly just want time to go faster and for it all to end. The following day after those 48 hours I feel quite weak and just need to gain back my strength as I have been in bed for the past 48 hours but then after that I am back to normal as if it didn’t happen and as if I don’t have to live with this terrible syndrome. This has become something that I have had to live with and deal with my whole life.

I have had people, especially teachers in primary school tell me that I’m faking it and that I must run or swim or play sport anyway, this put me off sports completely and to this day I am not a fan of team sports or getting pushed to do anything.

I think the worst thing about having this syndrome is how unaware people are of it, including doctors and that is why I am writing this to share my experience and try and create an awareness about it so that children going through the same thing don’t feel so isolated and alone.

This post has been all about me surviving with this terrible syndrome and briefly what it has been like for me growing up with CVS, I guess I could count myself lucky in a way that it does only last 48 hours. For some people that attack could last up to weeks and they have to be in hospital on a drip for the duration of an attack. At least it never lasts that long for me although those 48 hours do feel like a lifetime. Although I would love to make this syndrome more well known so that doctors all over the world know about it and will be able to help and support children in a similar situation to me as I didn’t really have that support from doctors, some even went as far to accuse my parents of faking it as the doctors just didn’t understand it. My family is super supportive, they always have been and will always be there to help me no matter what, as well as my boyfriend, I can truly say that he has seen me at my worst and really helps me get through it and yet he still sticks around. My friends have also been amazing in this regard. If I didn’t have the amazing support and love from everyone that I care about than I don’t know how I would have got through it all.

So my message to all of you reading this is even if you don’t suffer from this terrible syndrome that no matter what you are going through, that you surround yourself with people that care for you, love you and will support you no matter what. People that have a positive attitude towards life in general.

Cheers for now!

Sadie van Niekerk. 

P.S. If any of you are also suffering with CVS or have a story you would like to share email me at believesadez@gmail.com whether you just want me to read it or would like me to post it on my blog, could be anonymous or have your name written at the end, the choice is yours.