Tuesday, July 26, 2016
Traveling While Chronically Ill
Frequent flyers like me don't travel very far.
That is, frequent flyers of the Emergency Room, like me.
Before I knew I had a chronic incurable disease called Cyclic Vomiting Syndrome, I lived in a pretty scary world.
I always wanted to travel the world, you see, but I was too scared to go very far away from the Emergency Room I was used to.
My disease is one of the most confusing and rare diseases of today, and is often misdiagnosed. If you're into Grey's Anatomy, Season 9 Episode 6's subplot is all about cyclical vomiting.
At the end of the episode, the doctors prescribe the patient Sumatriptan and the patient goes on his merry way having been treated, finally, for his illness. He leaves the Emergency Room with his life improved. But that's not really the story.
The story is how this man was labeled as a drug seeker, then finally the doctors realized the patient had a real illness they had barely heard of. If you're curious about CVS or have CVS and feel alone, this is a good episode to watch.
But this post isn't about what CVS sufferers go through in the Emergency Room, that's another post. This one's about traveling with chronic illness, or not traveling that is.
Probably one of the strangest things about this disease is that it comes and goes. It has been linked with menstruation and/or stress and has been called the Event Stopper. Reason being, is that this illness pops up around the same time as joyful events, knocks a person out, and they're then labeled flaky and unreliable. With me, I've always worked extra hard at whatever jobs I've had at the time, then when I've become symptomatic and been out sick for a week, it wasn't too much of a stressor for whomever my boss was at the time. I still felt terrible for missing so much work, but now I know it wasn't really my fault.
That's why I've only taken vacations fairly close to home. On one side, I'm worried I'll get sick before I leave and have to cancel my trip; on the other side, I'm worried I'll get sick during my trip and land in the Emergency Room. That's a lot of needless worry for a vacation.
Two nights before we left for the coast I spent the night in a fetal position crying. I kept falling asleep then waking up in the midst of a panic attack that I was about to become symptomatic. Thankfully, because of the enzymes I use and the exercise, I didn't become symptomatic, however.
Because of how I've managed to abate most of my symptoms through diet and exercise, I didn't do what I normally do on vacation. I didn't spend the entire time clenched like a fist about to throw an air punch. I didn't try to do as much as I can the first day because of the gnawing fear that I may become symptomatic during my vacation and have to go home early. I had what others take for granted. I had a normal happy vacation. I ate steamed clams, built a sand castle, flew a kite. I was humbled by the vastness of the ocean as I stood in front of it so small and insignificant. One thing chronic illness has taught me: is to never give up. One thing abating my symptoms has taught me: never take a healthy minute for granted.
I'm a frequent flyer of the Emergency Room. One day, if things keep progressing better, I'll be a frequent flyer of the skies. I know I better start flying though, before I sink back into the abyss that awaits us all.