Cyclic Vomiting Syndrome Association Nordic

Hello/Moi ?

I’m a cyclic vomiting syndrome warrior from Finland. I’ve been sick since 2015.

At first I thought it was my thyroid acting up again, like it had some months before… but it was fine. I went to our small local hospital a few times. They said everything was fine.

I turned to my friend google and diagnosed myself. I could no longer hold down hot liquids, so I was admitted to a hospital. I was in for a week, during which I was accused of having
an eating disorder or some other psychological reason for my vomiting. At this point
I puked and was nauseous every day, with only a few “good” days here and there. I had a few intense episodes that lasted for a few days. Some people can vomit up to 50 times per hour, and episodes can last from hours to weeks.

I had to temporarily move back in with my parents and leave the city where I was going to uni. It turns out I was never able to go back. Not only had I lost my health, but had I lost my education and the possibility of a career. I also lost the possibility of someday starting my own family. I couldn’t even look after myself most of the time, let alone take care of a child. I’ve always wanted my own dog, but I knew I would even have to get help with that, as I could never afford the vet payments without a steady job.

I was admitted to a bigger hospital the next time. They did all the “ruling out” testing, but I didn’t get a diagnosis from there. Instead, they were happy to send me to a psych ward (voluntarily) as the next step of their “ruling out” process. I only did that so they couldn’t hold it against me in the future. “You look depressed,” they said. Well, I don’t think I’m supposed to look like a happy Miss Universe after puking for months!

I finally got my diagnosis from a private clinic, by a neurologist who had treated a few CVS patients. Unfortunately, I didn’t have luck with meds. When I was admitted doctors refused to try one nausea medication because I didn’t have cancer.

Fast forward to today day. I have found one abortive medication that works fairly well, but it’s really expensive, so I can’t afford to use it often. I have had a few longer breaks of being more stable and having milder symptoms. I’m never completely symptom free, though. And I have other health issues as well, so it seems life is making sure I’m not enjoying it too much.

Something else on list of the things I’ve lost are some friends. Not everyone wants to deal with someone who has a chronic illness, even if they don’t have to do anything more than before. I’m still the same person behind this broken body. I have gained some new friends from my amazing CVS family. These people are the strongest and kindest people I know, and most importantly know exactly what I go through. I want to thank all of them for their love, support and understanding. I’ve also gotten some purpose back in my life. I help others who are sick and I am an advocate and specialist for myself and others my own and others. Mind you doctors hate when you know more than them… ?

And remember, just keep swimming. Xx

23. September 2018

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