Wednesday, June 10, 2015

Taking Chronic Illness on Vacation

As many of you saw, Nick and I got back from a cruise to Alaska a couple weeks ago. Like I covered pretty thoroughly in my previous post, we had a great time! Before I finally admit the trip is over and rejoin normal life, I wanted to share something that I learned about dealing with my medical issues during the trip. It was unexpected and initially disappointing, but ended up being something that really made the trip special.

I had been looking forward to the cruise because I was ready to GET AWAY. If you've been following this blog, you know it had been a very long school year. I had been hospitalized twice during the fall semester and missed 2 other weeks for out of state travel to specialist appointments. Then in the spring, my first admission was less than 2 weeks into the semester, and it didn't end there...numerous ER trips, an NJ tube, and eventually surgery to place a PEG-J tube filled my calendar when it should have been filled with meetings with students, research projects and scheduling my dissertation proposal.

But the semester finally ended! We had been planning the cruise to Alaska for almost a year to celebrate my brother's graduation from college. Nick and I were looking forward to a week away, and taking a break from from life. Then, a couple weeks before we left, my mom posed a question to me. I don't remember the exact wording, but it was something along the lines of:

"Are you ready to go on the cruise with MCAS?"

At first I was confused and not sure what she meant. Of course I was ready. I had doctor's notes stating I needed to carry medically necessary liquids through airport security and onto the ship. I had made list after list of supplies to make sure I didn't forget anything essential. I had (what we hoped would be) more than enough Epi-pens and emergency medications to manage any reactions. We had contacted the ship ahead of time to make sure they were capable of handling my extremely limited diet and that I had an extension cord in our cabin to charge my feeding pump. All the "normal" necessities like clothes, toiletries, and of course cameras were ready to be packed. Why wouldn't I be ready?

Like any daughter does on *very rare* occasions, I flippantly answered her and moved on. But I did spend time thinking about what she asked me. Anyone who knows my mom knows she doesn't ask idle questions. =) There is always something she is trying to get at when she asks a question, but this time I didn't figure it out until I got to the airport. We were waiting at the gate for our first flight when what she asked me finally made sense.

After an anaphylactic reaction on a plane 2 years earlier, my doctor decided I should pre-medicate prior to flying to hopefully prevent any reactions before they start. At this point, almost all my medications are liquids so I can put them down my J tube, which at home is no big deal. However, in the airport, it was much more complicated.

As I stood in the bathroom trying to balance my syringes and cup of water on the edge of the sink while keeping the end of my feeding tube from touching anything and getting contaminated with who knows what kind of bacteria and germs, I started getting frustrated. I was supposed to be going on vacation. Things were supposed to be relaxing and fun, and I was waiting to feel like I had gotten away from the craziness that was our life. I wasn't supposed to have to deal with my J tube medications in an airport bathroom while people stared as they wash their hands.

And that's when I realized what my mom meant. She wasn't asking if I was physically packed and ready to go, she was asking if I was ready to take my chronic illness with me on the trip. It wasn't that I actually believed I would all of a sudden be healthy just because I was going on vacation, but there was a part of me that was maybe subconsciously expecting things to be easier to deal with since I was on vacation. That moment in the airport bathroom, I think it hit me. We may get breaks from every day schedules and routines, but for those of us dealing with a chronic illness (or any special need), there's no vacation from being sick.

It's like planning a trip to Italy and ending up in Holland instead. (Read the whole "Welcome to Holland" story here). You step off the plane and feel out of sorts and upset that your trip is not what you had planned. But if you take a minute to look around, you realize that while Holland might not have the canals of Venice, the Sistine Chapel, or the Leaning Tower of Pisa, it has a beauty of its own in the canals in Amsterdam, the countryside windmills, and the colorful tulips. Holland might not be as fast paced and flashy as Italy, but there is still beauty in slowing down and taking in the sights.

And that's what I learned on this cruise to Alaska. Growing up our family vacations were always fast paced and busy. This trip was different. I needed more down time for me to recover from one activity before moving on to the next. After a day of kayaking, I needed the evening to relax instead of going out again after dinner. After hiking a technical trail in the sun, I spent the next day just sitting out on the balcony watching the mountains and glaciers in Glacier Bay. Instead of staying up late each night to see the shows, I made sure to get a full nights sleep so I could enjoy activities the next day.

Was this trip different than what it might have been had I not been sick? Yes. Was this trip fantastic in its own right and did I have a great time? Absolutely! I would even say that being forced to slow down by my chronic illness gave me and my husband the chance to just enjoy being on vacation and not feeling like we were rushing around to get to one activity after another. It might not have been the Italy that I was used to and maybe was expecting, but I found Holland to be just as incredible and a beauty all on its own.

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