My Unseen Journey

Ever wonder what your child might be thinking while going through a Cyclic Vomiting Syndrome Cycle?  IT's SO MUCH MORE THAN A VIRUS.
 

 And my CVS adventure begins. It feels like a bad dream but its real and no one know how bad its going to get.  Those around me only see some of what I am going through. Sometimes these episodes are short... others last a long time. Sometimes I stay home and other I end up needing help from the hospital. From the outside it looks like I am just laying there and throwing up a lot. But on the inside its so much more than that. 

  

It starts as most of my adventures or cycles do. I find myself suddenly in a dark cave with a fire breathing dragon breathing down my neck. The heat is increasing every moment and just when I think I cannot take anymore, it hits. The vomiting. The dragon is no longer breathing on my neck but rather is hitting my stomach with his tail over and over again. I throw up about 4 or 5 times....before my mom is able to get to me. 

The dragon take a break from hitting me with his tail for a little but he has left me dangling on a ledge in the froze side of the mountain. I'm freezing with chills and shaking,  No matter how many blankets or gear I have on I cannot stop shaking. But it wont last because I know the fire breathing dragon will be back any minute to heat me up again. And so it’s the dragon and trying to climb to safety and back and forth for what seems like forever. How long has it actually been? Probably only about 15 mins or so when I look up to see the clock.  

  

My mom brings me my medicine which  brings me back to reality for a min or so. "Here honey. Here's your meds. Remember they just dissolve on your tongue. Nothing to swallow its easy." 

I do my best to trust her and take the medicine. I muster up whatever will power I have to take the small pill that dissolves in my mouth in hope it will bring relief. I  know sometimes it works and tames the beast.. and others it does very little. Which it will be today... I will have to wait and see. 

Every 3 mins, 5 mins, 10 mins I throw up. After only been an hour and I've lost count. There's nothing left to throw up... but my body thinks there is and it keeps trying too. There's nothing left to come up but my stomach itself. Mom tells me that's called retching. What ever you call it, it hurts and I'm dizzy.   

"I'm do not think its working mom. It really hurts." as I attempt to  runs to the back to the bathroom.  

Each time I try to make it to the bathroom. I do not see the 15 feet it is from my bedroom. Instead I see a battlefield of landmines, and creepers standing in my way. It feels like its 15 miles or worlds away. Sometimes I make it. Sometimes I crawl. Sometimes I cannot even lift my head. At this point after having made this trip about 6 times I cannot do it anymore.. and I just reach for a towel or bucket which ever is closest. I have no energy to make it on my own. 

Trying to puke in a bucket is like a game as well... how on earth am I support to get it in....

"Want to try a bath I know it helps sometimes?" Mom asks me. I quietly agree and she helps me into the tub. 

 I now imagine my adventure includes crossing an ocean.  When I start out and board my boat, the seas are somewhat calm. Its peaceful and reminds me of the summers on my grandfathers boat. We would fish and swim up at the lake. It was always one of my favorite things to do. Then without warning I see a Tsunami or large wall of water heading my way. I want to run but I cannot get anywhere in time. 

 "Thomas,  I think you need back-up. The meds did not work and you are still throwing up. I hate to say this but I think its time."  

I can only lift my head lightly and nod. I know what she is saying. It's off to the hospital. I have a love/hate relationship with that place. They have needles and I HATE NEEDLES. But they have IV's and I know that’s one of the only things that can stop the vomiting and save my whole mission. I know it well I've done this several times before.  

"Want your Spy Goggles?" Mom asks me. Yes I do. Its actually a eye mask that keeps the sunlight out of my eyes. Sometimes even light can make the vomiting worse. We've been doing this a long time so we have many tricks that help me. Sometimes I believe it’s a high tech computer screen that shows me secret messages on how to get me where I need to be.  

"I've got your gear all packed and ready to go with us" Mom reassured me as she carried me out of the car to the drive to our local hospital. By gear, my mom means my weighted blanket I imagine is bullet proof shield, candy canes that can hide the worst of tastes that my stomach might throw at me. I'm still wearing my spy goggles to block out the light.  

"The car is already to go" mom quietly whispers to me a few minutes later. The Car. Oh I hate the car. On a normal day they are great. But on a cycle day.. they feel like a horrific roller coaster I want to get off of. I am secretly working on a better form of transportation.... someway to move without moving.....  When ever I move it brings on the vomiting even worse. However if I want to complete my mission I have to push through to the end destination.  I continue to throw up the whole car ride over. I think it takes about 10 min but it feels like hours.  

Once we get there I find myself in a barren dessert. I am exhausted from the journey so far...add a new feeling though .. I want a drink of water soooo badly..... I would do anything to be able to have a drink of water. Hard things is as much as I want it.. my body is convinced that it is poison and to get rid of it. I open my eyes briefly to see who is my tour guide or nurse on this leg of my trip.  

 My mom checks us in with our secret code word, CVS. The nurses do not know the code and look at my mom oddly. But that’s ok mom is a wonderful teacher and will help them to understand what I am going through. She should.. shes had enough practice at it.  I know what CVS is...Its Cyclic Vomiting Syndrome. My doctor told us that's what we should call it when this happens to me. He told us that it’s a rare medical condition that only 2% of children have. Its thought to be a type of migraine.  

  

My mom speaks a strange language, she calls medical speak. I hear the typical words "extreme emesis" "conscious coma" "dehydration" "Retching" and the ever faithful sigh "Its not a VIRUS". Thankfully they understand and move me to another room when they are able to get my lifelines going.  I used to be afraid of needless... but I've had them enough at this point that I know that they are worth the little pain they are going in. I imagine its super hero serum that's boosting my energy, but mom tells me its just water solution called saline. Whatever you want to call it, its finally helping me come back home from my journey.

When it finally over and I know I've won, I open my eyes to see my mom and dad asking if I feel better. "you look so much better now" they tell me. "the rest must have helped" I stop and laugh to myself what rest? I've been on this insane, painful, exhausting journey today. Its funny how they do not see it. All they see is the vomiting and the "sleeping". I wish they knew. I wish they could see what I go through. What it feels like.  

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Some days it feels like life is passing me by...and in some ways it is going on without me on some days. But its not all the time I keep reminding myself.  The life I lead may be different, but its not all bad. As long as I am not alone, and have the support I need, I am able to accomplish my missions.  The goal of all my adventures is the same, To Stop Throwing up and Make it through the day. Many kids with Cyclic Vomiting Syndrome share in the missions everyday. Most of the time people think its all in our heads... and in someways it is. It’s a real medical condition that occurs in our brain. We would never do this for fun.... because its not. We do better with getting through it when we imagine we are on these incredible adventures that no one else can see.

We are RARE, But We Are NOT ALONE!

CVS kids are not weak. We are STRONG.

Colleen Rice

Rare But Not Alone

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