CVS

From my tumblr archives (x):

I have CVS. Cyclic Vomiting Syndrome. I just thought it would be helpful to give you guys some vocab so you know what I mean when I'm referring to  stuff... if you're interested. If you're not, carry on.

CVS = Cyclic Vomiting Syndrome

Triggers = things that might cause an episode. Multiple of these have to be an place to cause in episode, not just one. They build on each other til they push me past some invisible threshold. My triggers include altered eating and sleeping patterns, traveling, intense excitement, anticipatory excitement, stress, anxiety. Apparently the type of stress and excitement that comes from hiding a huge q&a from all my friends and then finally telling them and having it happen. Among other things.

Prodrome phase = that time when I can tell I'm starting to have an episode but I'm not throwing up yet. I will usually wake up in this phase. I'll feel very hungry because it's time for breakfast and usually the day before I didn't eat quite as much because I just got full fast. But when I go to eat, I feel nauseous. I'm trying to learn how to abort an episode in this phase so I don't progress to a full blown episode.
Abort an episode = get the nausea to stop without throwing up. By taking prescribed meds such as zofran, phenergan, and now ativan.

Vomiting phase = duh, when I start throwing up. Once I start throwing up, there is usually no going back. I've never successfully self-aborted once I start vomiting. Usually I throw up once, fell better briefly, then throw up again in a couple of hours, and at that point never feel better, am very restless, stomach is very tense, and I throw up about every 30 minutes, or every time I try to talk and explain what's going on to people, etc.

Then I go to the ED (ED stands for emergency department, it's the new name for ER), and I get an IV with fluids because I've gotten super dehydrated by not being able to keep anything on my stomach, and I get meds through my IV, mainly the meds I take PO, they just work stronger, faster, better. Then I get completely knocked out for several hours, they wake me up and I'm all groggy but not nauseous and they send me home and I never quite remember how I get there and then I sleep for hours and hours and hours.

Then I have to be super careful how quickly I put food back on my stomach, and have to ease into it with easy/bland foods first, because there's been times where I've felt super better, but eaten something like icecream too fast and caused another episode and had to go back to the hospital. again.

 So that's what happens in my body. Yesterday I woke up and immediately knew I was in my prodrome phase, and started doing everything I could to abort it. But after my first line of drugs didn't help, I knew I needed to take my second drugs and those make me drowsy. That's when I passed on the MC role, and that's when I finally started throwing up. I was unable to abort my episode yesterday on my own, and had to go to the ED. good news is that the drugs worked in the ED and I'm in the recovery phase now.

So, I understand exactly what's happening in my body. to a certain extent at least. But I absolutely hate it. I feel like such a pathetic and useless worthless human being when it happens.

Like, if it's because i'm anxious, shouldn't I just be able to say "stop it, stop it body, stop feeling anxious?" Trust me. I've tried. I want to. I think I'm being absolutely ridiculous. In fact, it's usually something that like, I don't *feel * anxious, but yet here we are with a knot in my stomach and I can't take a bite of bouillon broth or water without wanting to throw it back up.

I don't *feel* anxious, I don't feel some uncontrollable intense anxiety that is altering my ability to function as a person. I don't have an anxiety disorder.

And yet my body is doing something completely different. My body is ceasing to function normally and I can do nothing about it. I try to relax, I try to lay down and sleep. But I can't. I get super restless, and I can't lay down, I can't relax, I can't do anything but start to vomit more and more and more frequently.

I feel so out of control and so pathetic when it happens. And every time it happens I'm left with residual fear that it will happen again. I am seriously wondering if I should really go to LeakyCon or VidCon this year, because it's just ripe with triggers. But I also don't want CVS to control my life.

It sucks feeling completely out of control of your body. It sucks.

I know I'm not the only person who's body does things that they can't control, that they hate. Mine manifests in this random, unique way they don't know much about (they think it's connected to migraines, in the pathways in the body, but it's been in the last several years they've even recognized it as a disorder in adults. And I had an adult onset. My first episode was in 2010)

It's easier now that I have a diagnosis, that I can tell them when I go into the ED what is going on, that I can hand them a note that shows I'm not crazy, and they don't have to start with meds that aren't going to help, but can go straight to what I know I need. I know exactly what I need.

But at the same time, I feel out of control, because there comes a point where I no longer can stop the episode. My body is outside of my control. And I absolutely hate that. Especially as a control freak.
Anyway, that is lots of info that you guys probably don't care about, but I know several of my new followers don't know this about me, and it's so much easier when I can just say "sorry guys, CVS".