Thursday, January 07, 2016

The Paradox of Vacationing with ME/CFS

Tropical vacation - Friend or Foe?
Last week, my mother treated our entire family, ten of us all together, to a lovely week-long vacation at an all-inclusive (and very expensive) resort in Jamaica. It was incredibly generous of her. The rest of my family - and everyone else who heard about the trip - thought it was the most amazing vacation ever. As you might have guessed, I struggled mightily with the trip and felt pretty awful for most of it.

It is much worse to be feeling awful in a gorgeous tropical paradise where everyone else is deliriously happy than to be stuck on your own couch in your own home where you can be sick in peace. You just feel out of place and out of synch with your surroundings and everyone around you.

I KNOW that all of you will understand, but I still feel horribly guilty even mentioning - even here on my chronic illness blog - that I did not love this generous vacation.

Worst of all, I am still not sure WHY I felt bad the whole week. Granted, we left on December 27 at 5 am, barely 24 hours after Christmas, and I was already exhausted and overwhelmed from the holidays themselves. And, of course, the 12-hour travel day through cars, airports, planes, and shuttle buses totally wiped me out.  Still, even with all that, I expected to feel better after a few days...and I didn't.

One of the upsetting things about this trip was that my mother treated us all to the exact same vacation 5 years ago. I was in worse shape back then, not yet on beta blockers so more prone to post-exertional crashes and with less physical stamina. Yet, I remembered feeling fairly well and being relaxed and enjoying myself once I recovered from the travel day. In fact, as soon as we got home this weekend, I went through my closet and found my 2010 journal, where I track how I feel, thinking I must be remembering it wrong. No, I really did feel pretty good and enjoyed that trip.

So, what was wrong this time? Well, that's the maddening thing, isn't it? This illness defies logic much of the time. I proposed one explanation after another to my ever-patient husband after we returned home: "Maybe it was because of the timing, just after the busy holiday season" (the last trip was Thanksgiving week), "Maybe it was more crowded this time because of the time of year," "Maybe the yeast overgrowth was still flared up, even though I thought I had it under control," and on and on, until he finally said, "Stop trying to figure it out! After 13 years, don't you know you just can't figure these things out!" Sigh...yes, I know that, but I hate it, so I never stop trying!

It was extra crowded this time and very noisy - our room was on the edge of the resort, right along the fence that separated our resort from the one next door - a Couples resort that had live music playing just over that fenceline every night until 10:30 pm! (and 12:30 am on New Year's Eve) One night, they had drummers featured, and it was so loud and so absurd that my husband and I just had to laugh. Another night, our 21-year old son came back to the room just as the band next door was playing Lionel Ritchie at 10:30 pm and he joined in with the chorus as he opened the door to our room: "All night long..." Sometimes, you just have to laugh.

My husband & I at dinner
Dinners were 7 - 9 pm every night, with all ten of us. I usually eat dinner between 5 and 6 pm and am flat on my back on the couch, with my feet elevated, by 7 pm (and up to bed by 9:30) - sitting up at the table for these 2-hour late-night dinners was torture. I pledged at the start of the trip to take care of my own needs - and I did often grab a snack at the dinner buffet at 5 pm to hold me over - but I didn't want to miss out on family time with everyone (of course, I should have).
Kayaking with my husband

Even though I wasn't feeling well, I did go on a short kayaking ride with my husband and on a snorkeling trip with the whole family the last day. Fun at the time, but again, I probably shouldn't have. Just walking from our room, on the far side of the resort, to meals or to the beach was probably too much exertion for how I was feeling.

I became very depressed on my second day there and realized it was that familiar biochemical depression that sometimes accompanies a crash. I switched from my dark, foreboding novel to a light, funny one, rested and read a lot, and waited for it to pass, reminding myself of my very own recent advice in my article, Riding the Chronic Illness Rollercoaster. Often, I was in a bad mood (that seems like such an inadequate unfair term when you feel so sick) by those late dinners, and I knew from my sister's eyerolls and snarky comments that she thought I was being negative. Healthy people just can't understand what it's like - like being on a resort vacation & trying to have fun when you have the flu. All the positive attitude in the world can't fix it, and sometimes it is just impossible to smile and pretend everything is OK.

My mother was incredibly supportive and kind to me the entire week. She was empathetic and caring, frequently checking to see how I was doing, encouraging me to take care of myself when I needed to, and just wanting me to relax and enjoy myself. So, I felt horribly guilty that I wasn't enjoying it more and that it wasn't relaxing for me.

The trip ended with a horrible crash. The combination of a late-day snorkeling trip (I usually only do active stuff in the morning because my heart rate is higher in the afternoons) and yet another formal, 2-hour, late-night dinner completely did me in. By the time I excused myself at 9pm (I never should have stayed so long, but the main dishes didn't come out until just before then), I was shaking and barely able to walk. I burst into tears as soon as I left the restaurant and was sobbing so hard as I shuffled back to our room, barely able to walk, that an alarmed employee stopped me to see if she could help me.

An old friend was also in Jamaica!
I don't want to give you the impression that the whole thing was awful (just check out the photos). There were definitely some good times too. I loved all the time with my niece and nephew (hence, those long dinners!) and spending time with our own two sons, whom are usually too busy now to spend much time at home anymore. My husband and I enjoyed reading in the shade on the beach. The ocean water was gorgeous and soothing to float around in. The food was excellent and plentiful. I told my husband today that I was missing my mid-morning Jamaican meat pie that he often brought to me at my beach chair when I got hungry! The snorkeling was absolutely amazing. I tried not to swim much - just floated above a huge coral formation and watched all the colorful fish coming and going, like a busy city street.

But I was incredibly relieved to finally get back home. I managed it and am grateful to my mother for being so generous and giving us all that time together. But it is so lovely to lie on my couch in the evenings!

Have you experienced these kinds of "vacations" that are more stressful than relaxing?

The whole family on a snorkeling trip - me in stripes


  1. My family travels three times a year, and I completely empathize with your struggle. On the one hand, travel is one of the main things that keeps me going, psychologically. I've always been an explorer, but since the illness there are many, many days when I never make it out of our tiny condo. Our trips make me feel like I'm still engaged with the world around, still the adventurous person I used to be. And even when we're not on the go, I can occupy myself happily reliving the trip stories, organizing photos, and planning for the next trip.

    On the other hand....

    On the other hand, it's an investment of energy I really don't have. I always compare my energy budget to the money situation of a very poor person -- and trips are the equivalent of running up the credit cards on funds you don't have. The next few months are spent "paying off my debts," with extra pain, extra illness, extra days in bed, etc, etc. Even worse are the days you describe when you're actually ON the trip and too sick to function. So depressing to spend a day in bed when you could be out doing something great. In my case, my husband and daughter just go off and see the city without me. But it's extra hard when you're in an extended-family situation where others might be quietly rolling their eyes at your absence...

    Also, I totally agree that both your surrounding situation and destination can make a world of difference. We go to Alaska every year to visit family, and there's something there (allergy?) that KILLS me every time. It's one of the most beautiful places with many favorite sights, but I'm thinking of staying home in future years. Not worth being miserable all the time.

    This has been long -- obviously a topic I feel strongly about! Thanks for your blog, and good luck to you.

    1. Thanks so much for your thoughtful reply, Tara. It helps so much just to know there are other people out there who understand! I had no internet connection there and really missed being able to "talk" with my virtual ME/CFS friends about how I was feeling (hence, this long post!)

      Hmmmm...I wonder if your bad experiences in Alaska might be indoor allergens or mold in the place where you stay? Might try something different next time to test the theory. We sometimes go to the Black Hills of South Dakota in June to visit my husband's family, and the pines are all full of pollen when we are there - killer! I would LOVE to see Alaska one day :)

      Thanks for taking the time to comment and share your experiences.

    2. I've never commented before but your post rang very true for me too. I love travel but find it difficult both physically and emotionally. It's easiest if it's a car trip and just me and hubby, but that's boring for him. I too feel like crying when everyone else is doing things I would love to do but cant. Then there's the fear that I'm over doing it that pollutes the things I do choose to do. Do you worry that you're doing permanent harm to your body when you're overdoing it so much? I may need to find some other way to expand my horizons than travelling.

    3. Hi, Lynne -

      I'm SO sorry for not replying to your comment sooner! I sometimes get behind - just found the email notification with your comment and realized I never replied.

      Anyway, I don't worry about doing permanent harm. After 14 years with ME/CFS, I know my limits VERY well. Plus, taking beta blockers has greatly improved my stamina & allowed me to be much more active without crashing after. So, when traveling, I know what I can manage and mostly stay within those limits - if I do too much, I usually feel better in a day or two (again, thanks to beta blockers as well as inosine and LDN).

      Thanks for taking the time to comment and sorry again for not replying sooner :)