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Tips for a CFS Vacation

April 3rd, 2012

My husband and I were fortunate enough to take a vacation to New Orleans last month, and I am still recovering. But I did want to share what I learned (or re-learned) on this trip about traveling with CFS. I wish there was a magic pill that would allow us to take vacations from CFS, but in the meantime, here is some of what has helped me while traveling.

  1. GO! First of all, go on vacation if it is at all feasible for you. My husband and I manage vacations once every five years or so. We might travel for a family gathering or go a short distance in summer, but to actually get on a plane and go somewhere is a really big deal. The physical and financial costs are very high, but the emotional benefits are also high. I think it is critical for those of us who are disabled, especially housebound people like me, to get a change of scenery. There’s probably research showing how important it is cognitively and emotionally for housebound people to see and experience new things, but even if the research does not exist I believe this to be true. There is no substitute for getting a break from the daily grind, so if it is possible for you to get away then I highly recommend you do.
  2. Planning. I’ve always been a planner and list-maker. But traveling with CFS requires extreme planning. The biggest challenge I have on vacation is wanting to do more than I am physically able. My list of “essential” things to do in New Orleans would probably be a lot for even a healthy person to do. My husband finally asked me, “What are the things that if you do not do, you will feel the trip was a failure?” That changed my perspective towards the list, and helped me narrow it down. It was still too ambitious, but it did help me identify what my highest priorities were so that we could focus our energy.
  3. Hotel. Stay in the nicest place you can afford. I spend most vacation time in the hotel room, so we are willing to pay more than we would if I was healthy. A nice view, comfortable bed, and friendly staff take a little bit of the sting out of being stuck in a hotel room. I always hit a point on vacation where I feel like I could stay in my bedroom for free at home, so it’s a waste of money to travel. But see item #1 on this list. A different four walls and view out the window is a good thing. We have also found that staying in a hotel with room service is important, if we can swing it. On this trip, my husband spent several days in meetings. No room service would have meant I didn’t eat when I was unable to leave the hotel room. A hotel room with a kitchen would be an alternative. There was a nice market near our hotel, so we could stock up on fruit, cheese, and so on to help offset the exorbitant costs of room service.
  4. Devices. Even if you do not use a wheelchair or other assistive device on a day-to-day basis, consider using one on vacation. On some previous trips, we have rented a scooter for me and that was great. I have my own manual wheelchair now, so we travel with that. There is no substitute. Using a scooter or wheelchair enables me to be out of the hotel room much longer, and enjoy walking-intensive activities like museums. I’ve never used a rollator, but that might be a good thing to try for some people. There are other advantages to using a wheelchair, as well. For example, you go through a separate (much shorter) line at airport security. Destinations like Disneyworld are extremely wheelchair-friendly, with separate (much shorter) lines and very well-trained staff. New Orleans was not as great in some places, like the French Quarter where the sidewalks are old and bumpy. But for the National World War II Museum, it was the only way I could go.
  5. Airports. I hate to fly. I hate airports, the people, the noise, the sensory overload, sitting upright for long periods of time, struggling with baggage, etc. I hate it. So we do what we can to minimize the negatives. We fly direct if at all possible. We bring my own wheelchair (so we don’t have to rely on airline personnel to show up at the right time with a wheelchair) and we check it at the door of the airplane. We ask for help at security, the gate, baggage claim, and anywhere else we need it. That help may not always be forthcoming, but we always ask (and are sometimes pleasantly surprised). We make sure to bring adequate fluids and snacks on the plane. And my most indispensable piece of airplane endurance equipment is noise cancelling headphones. I don’t even always hook them up to my iPod. It makes a big difference in cutting the noise of the engines and the chatter of other passengers (that I can never seem to block out).
  6. Schedule. Build rest days into your schedule, and then build in some more. I never plan enough time for rest. This vacation was the longest we have ever taken – 10 days, and I had four days when I did not leave our hotel room at all. I am better about planning rest times during any given day, since I know that I can’t be out for more than a couple hours. I also tried to plan ahead. There were a many restaurants I wanted to try, and on two days I did nothing all day to be sure that I could go out to dinner that night. Flexibility is also key. We adjusted our plans based on lots of things, including how I was feeling, the impressive New Orleans thunderstorms, and how crowded we thought a location might be. For example, we wanted to see the parade of the Mardi Gras Indians, but had to let that go when we found there was no safe, wheelchair-friendly way to do it. Museums tend to be less crowded during the week. And we learned about weekend crowds in the French Quarter the hard way! I much prefer predictable, planned schedules, but we went into this trip knowing we would have to adjust on the fly and it helped.
  7. Nutrition. Ensuring I have adequate nutrition and hydration seems like such a basic skill, but it has taken me a long time to master.  We had the convenience of a nearby store and the hotel market (very handy for when I was by myself and really needed to boost my electrolytes). Carry food and fluids with you everywhere. Pack your vitamins and supplements. I was surprised that I needed better hydration than normal while traveling, which I guess is true for everyone. It’s much better to carry those supplies along with you and not need them, than deal with the reverse.
  8. Alone. Expect to spend some time alone. Your partner, family or friends will undoubtedly want to do things you cannot. In our case, my husband had business-related meetings to attend. If you plan ahead, it is a little easier to tell your family to stay at the pool while you rest, or send your partner off on a hike without you. In my case, this meant knitting. I had several audiobooks on my iPod, and I packed lots of yarn. For the first time ever, I knit all the yarn I brought along (can’t show you, as they are presents). I cut my security blanket and left the computer at home, compensating with the iPod and e-reader. It meant less weight to carry, and I had more than enough entertainment to fill the many hours in the hotel room.
  9. Buddy System. I am housebound and live in the suburbs. I am not able to drive, and this means that anywhere and everywhere I go at home is with someone. To be in a city, with cabs readily available, and neighborhoods to explore, I felt like I had reached an oasis after a week-long desert trek. And if I had done as much as I wanted, I would be as sick as the dehydrated person who over-drinks at the oasis. I’ve developed restraint out of self-preservation, but I still need someone to hold me back. My husband is frequently better attuned to my limits than I am, simply because I want to keep going. Relying on your companion(s) to help you gauge when it is time to rest or stop altogether can really help. I went out one day on my own and definitely overdid it. Maybe it’s just me, but having a friend be my reality check is important to avoiding early burnout.
  10. Disappointed. Despite all the planning and flexibility, I did not do all the “essentials” on my list. The reality of CFS is that we cannot do even a fraction of what we want to do. I’ve been sick for more than 17 years, and my desires have still not completely calibrated to my capacity. I had a lovely vacation, but I can’t help thinking that a few more days might have made it possible for me to manage those last few things on my wish list. Now that I am home, I am trying to navigate the waters of disappointment. But the root of it is that CFS insisted on accompanying me on vacation, and nothing can change that. Considering my degree of illness, and what my normal life is like, this vacation was a huge success. Realistic expectations help offset the inevitable disappointment of traveling with CFS.
  1. Dana
    April 3rd, 2012 at 20:55 | #1

    This is beautifully written! I’m so glad you were able to take a vacation, even though CFS had to accompany you. Your strength and attitude are inspirations to me!

  2. April 3rd, 2012 at 22:45 | #2

    I would love to visit friends in Baton Rouge. We lived there a few years. I loved my home there, at least I can go on line to see it.

  3. April 5th, 2012 at 04:58 | #3

    This is all great advice. Thank you Jennie. Somtimes I think what I miss most from my old life is the ability to be spontaneous and never more so than when on holiday. But with good planning we can get more out of our time. We should never put our life on hold because of this condition. We can still have holidays and do fun things, we just have to do them in a different way!

  4. Lonie
    April 7th, 2012 at 10:31 | #4

    This article was just what I needed. I am on vacation right now spending two weeks at the beach. I am blessed to have a beautiful condo with a full kitchen, nice balcony that faces the ocean and windows that allow me to look down the beach and enjoy not only full sun but the lights of Myrtle Beach at night. Although I have only been on the beach a couple of times in a week I don’t feel to badly since I can still enjoy the beauty and sounds of the ocean from the couch. I have books to read, my computer and my crocheting to enjoy while my husband heads out to the beach by himself. Thank you Jennie for making me feel so much better about not being able to do my favorite beach activity, shell hunting, on this trip but I can still enjoy my two weeks away from my daily struggles at home.

  5. Jennie Spotila
    April 7th, 2012 at 10:36 | #5

    Lonie, thank you so much! I’m thrilled this was helpful to you. ENJOY your time at the beach! I find being near the ocean to be incredibly relaxing and rejuvenating (at least emotionally).

  6. Lois Ruth
    April 7th, 2012 at 22:11 | #6

    Jennie – You are a remarkable woman, and an inspiration to us all.

  7. April 9th, 2012 at 10:51 | #7

    For me coconut water is one of the most important essentials when traveling. I get dehydration episodes (apparently caused by hypopituitarism caused by CFS/ME) which are life-threatening because of my adrenal insufficiency etc. Flying is one of the worst triggers (not sure if it’s the plane ride as such or just the overall hassle, stress and energy suckage). I have a med I can take (desmopressin), but it can cause edema. And while flying can make me dehydrated, it can also swell me up at the same time!

    If I have a dehydration episode, all the water I drink just goes straight through (and often causes bad stomach pain and fever, too…) Coconut water I can retain because it’s isotonic – but doesn’t taste nearly a yucky as Gatorade and such. It’s too bad you can’t really take your own liquids on the plane any more, but I’ll drink it as soon as I get out of there. Luckily coconut water is fairly easy to find nowadays.

  8. Jennie Spotila
    April 9th, 2012 at 21:16 | #8

    I’ll have to try that, Maija. I have problems with dehydration too, although it has taken awhile to figure out that is what is going on.

  9. Char
    April 10th, 2012 at 23:16 | #9

    How strange to read this post while we are vacationing south of Myrtle Beach with our two teenagers who have ME/CFS. They can’t walk the beach but they love the sun when its not too hot and the home we rented has 2 couches and a nice TV! Somehow their need to recline isn’t as apparent when we are in lazy vacation mode. As long as we don’t plan a vacation with lots to do we are ok. We must remember how lucky we are to have a vacation while so many others never get to see different walls!

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