In 2001, I took a major vacation.

In 2014, I took a major vacation.

The 2001 vacation: My husband and I took a flight from Sacramento to Paris for a three week stay in a studio apartment. Time to get there: 15 hours

The 2014 vacation: My husband drove us to Dillon Beach on the Pacific Ocean for a four day stay in a cottage. Time to get there: 1 ¾ hours

Why am I calling both of these major vacations? Because in 2001, I wasn’t sick when we embarked on our journey, but in 2014, I was.

In both instances, despite the big disparity in distance travelled, by the time we got to our destination, I felt the same way: a combination of dazed and wired fatigue. That feeling is a normal reaction to a trip from Sacramento to Paris. It’s not a normal reaction to a drive of less than two hours.

In fact, the exertion it took to pack for Dillon Beach (food, clothes, medications, bed paraphernalia, such as my collection of pillows), followed by riding in the car and, once there, unpacking everything, left me “cooked,” as we often call it in our household. I spent most of the four days at Dillon Beach trying to recover from the toll that getting there had taken. And, after returning home, my body collapsed for several days, as if it had been doing its best to hold me together for the four days away from home, but couldn’t do it for one more minute.

Wikimedia Commons
Dillon Beach
Source: Wikimedia Commons

Am I sorry I went? No. I freely agreed to go. I’m writing this piece to share what it can be like for a sick person to travel. Thankfully, it’s not this difficult for everyone who is chronically ill (which includes those who are in chronic pain).

Nevertheless, I thought my experience might be helpful to others, both to those who are chronically ill and to their family and friends.

Here’s what stood out for me about this trip:

1. Except for my immediate family and my two closest friends, I didn’t tell people I was going.

Why would I deliberately hide a trip from people? Because, from over thirteen years of living in what I call "the parallel universe of the chronically ill," I knew they wouldn’t understand. They’d assume my health had improved, and then I’d have to field well-meaning comments, such as “I’m so glad you’re feeling well enough to travel.” I wasn’t feeling well enough to travel. I just went anyway.

Hiding my plans like this did not feel good. In fact, it felt dishonest (although I would not have lied had anyone asked me outright if I were going). But from many years of experience, I knew that people wouldn’t understand, and so I kept my mouth shut about the trip, which included not sharing with them afterwards some of its pleasures. This, of course, increased my sense of isolation from others. It’s a balancing act that those of us with chronic illness are continually engaged in. Perhaps I let the scales tip in the wrong direction on this one. I’m not sure.

2. Why would I go on a vacation that I knew would exacerbate my symptoms?

I love the ocean, but mainly I went because my son and his family were going to meet us there. It was an opportunity to spend extended time with them in a setting free from work and household obligations. The cottage was a perfect fit for my husband and me and for their family of three.

I knew before we went that I’d struggle with my health, but I decided that the upsides outweighed the downsides. I kept telling myself: "It's just four days; you can do it!" During our time there, I tried to hide how sick I felt, but I could tell that my family was aware of the toll it was taking on me. They’ve been around me long enough to recognize the drawn look on my face when I’m “cooked.” Still, they sensed that I didn’t want my illness to be the focus of the trip and so, taking their cue from me, we didn’t talk about it.

3. By 9 a.m., it felt like 1 p.m. and by 5 p.m., it felt like I should be going to bed for the night.

It was very hard for me to get through the day. At home, I get up about 7 a.m., nap about 1 p.m., and turn out the lights at 10 p.m. The nap gives me a bit of a bounce that helps me get through the afternoon. By about 6 or 7 p.m. (unless it’s a day when I’m bedbound), I retire to the bedroom, where I listen to audiobooks or watch TV until around 10 p.m.

Unfortunately, on this vacation, I had that 1 p.m. “It’s time to nap” feeling by 9 a.m. Nevertheless, I pushed through until close to 1:00 before napping. But by 5 p.m., I had to take a second nap. I felt like I was playing catch-up the whole time.

4. The vacation was a “happy-sad” time for me.

I was sad about my limited ability to do things with the family. My son and daughter-in-law and granddaughter walked down to the beach every day. I made it down there once, but felt too sick to take off my shoes and wade in the water, something that’s always been special to me.

On the other hand, I was happy to be in such a beautiful place with them. Due to health or financial limitations, many people who are chronically ill wouldn't have had the choice I did. I was also happy that I was able to play a game of Boggle with my son and husband and to teach my seven year old granddaughter, Cam, how to knit. The latter was truly special.

I was sad that the very four days that may well be the most adventurous of this year for me are likely to turn out to be the four days that I felt the most sick. Feeling at my worse for four days straight, followed by almost a week in bed, was extremely difficult to tolerate, physically and emotionally.

Still, I’m happy I went. So, all in all, it was a “happy-sad” experience.

I hope this information and these reflections will help others who are in a similar situation as I am decide what to do should the opportunity to take a vacation come along, and I hope you’ll share your experiences in the comments section below.

© 2014 Toni Bernhard. Thank you for reading my work. I'm the author of three books:

How to Live Well with Chronic Pain and Illness: A Mindful Guide (Fall 2015)

How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow (2013)

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers (2010) 

Visit www.tonibernhard.com for more information.

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