Coping with Chronic Fatigue Syndrome: Your Special Needsby Cheryl Pendry, PassPorter Featured Columnist
Last modified 2/24/2011
Everyone looks forward to a vacation and most of us plan and prepare for that time away from work, school, and just the daily routine of life.
However, for some of us, there are more preparations to be made than most people, those who have some form of special requirement because of health issues.
Epcot - France
Enjoying a Grand Marnier Slush in France.
It's something I'd never thought about until the summer of 2009. That's when I contracted chronic fatigue syndrome, completely out of the blue. For many weeks, I had no idea what was wrong with me and neither did anyone else who saw me. After many tests and many fears, the conclusion we were left with was that I had an illness that would leave me tired at sometimes the slightest of physical activity.
As the months passed, I was able to do more and gradually got myself back to work full time, although my activity levels were nowhere near what they had been before my illness. It was a very hard thing to come to terms with and to deal with and, as the time wore on, I found myself wondering how it would impact on the amazing vacation that we already had planned. It would take us to Disney twice, with a road trip to Key West in between and then a trip to see our friends in the Pocono mountains. You see, I never do things the easy way when it comes to vacation. I’ve always had the view, why see one place, when you can see a multitude instead? After all, it’s a long flight from the UK to the United States and we may as well make the best of our time once we’re there.
Of course, by the time my illness started, there was no way we could make any changes to our vacation, as flights were already fully paid for, DVC points were committed to our time in Walt Disney World, other hotels were paid for and we’d bought Annual Passes. I wouldn’t have had it any other way. I didn’t want to change anything. After all, why should I let my health problems rule my life?
I had no concerns about the road trip aspect of our trip. After all, it would leave me with plenty of opportunity to sit down whenever we were in the car, which was no bad thing and so it proved to be. The concern was more how on earth I’d cope with our time in Disney. Let’s be honest, we all know that you do much more walking than usual whenever you’re in the theme parks, as they’re so huge.
I realised that I needed to plan out how to handle this and, for this task, PassPorter’s Open Mouse to Walt Disney World and the Disney Cruise Line quickly became my best friend. This title covers a multitude of health problems and I was delighted to find that chronic fatigue was one of those listed. I quickly devoured all the information in the book relating to my condition and it helped me to plan which attractions I could still easily do and which might be more of an issue for me.
For example, I hadn’t thought about the stretching room in the Haunted Mansion possibly being an issue for me, but of course, you have to stand during it. In the end, I was fine with it, as when we went on it, it was practically a walk-on, so I had barely done any standing. But had there been a long wait beforehand, I would’ve known to ask the Cast Member to show me through a route that allows you to avoid it.
Fortunately, I’m not a big coaster fan, although I do like things like Big Thunder Mountain Railroad. The book quickly told me that particular ride wasn’t a good idea, as it would throw me around and I took that advice and avoided it for this trip.
Tip: Carry Your Health Insurance Card
When travelling in the parks, make sure you have your health insurance information with you. If anything happens to you while you are in the parks, Walt Disney World will send you via ambulance to the nearest emergency room. On my last visit, I was taken to Florida Hospital in Celebration. Luckily, I had my health insurance card with me. With the card, the ER was able to charge me only for my deductable, and then bill my insurance company. Without the card, they would have charged me the total amount and I would have had to settle with the insurance company on my own when I returned from vacation. And when your bill ends up being over $6000, that's a lot to deal with! - tip contributed by Joanne
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Other things I hadn’t thought of before included the fact that you need to stand for some of the movies in World Showcase. I quickly ruled out Reflections of China, as you have to stand for that. It was a shame, but I’d rather ensure that I kept my strength for other things.
Apart from that, the other real change this trip was that I literally did almost no planning for the times we’d be in the parks. Sure, I knew which park I wanted to go to on each day and most of those, as is usual for us, revolved around our dining choices. But further than that, I just stopped planning altogether. I only had a couple of attractions in each park that I was determined to get on, but that list was much shorter than our previous trips. That way, if I wasn’t feeling great, there wasn’t any pressure on me to walk between rides. It actually turned out that we did much more than my little list, but it certainly allowed me to relax and enjoy our time a lot more.
When we got to Disney, I immediately became very good at seeking out any opportunity to sit down, and I was amazed at how many seats there are when you’re looking for them. Disney really does provide plenty of opportunity to rest as you walk around and, if it’s not been raining, you can quite often just sit yourself down on the sidewalk, so long as you’re out of the way of people walking along. I would often just sit and recharge my batteries for a few minutes, while my husband wandered around taking photographs. It was something I quickly came to love doing, as it allowed me to people watch and just take everything in around me. On our previous trips, it’s fair to say that I very rarely stopped to “smell the roses” and that’s something I appreciated being able to do this time.
Staying on property is almost a prerequisite for someone with chronic fatigue as well. As we’re DVC members, we always stay on property and being able to head back to our resort for a couple of hours rest during the afternoon again really helped to recharge those batteries. After that, I was ready for dinner and to head out to the parks for an evening of fun.
Disney really does everything they can to help anyone with a special need of any kind and, if you’re in that position, it’s perhaps more important than ever to plan your trip beforehand and to know your limits. That really proved to be a valuable lesson for me and ensured that I still enjoyed my Disney vacation, even if it was at a totally different pace to my previous ones.
Epcot - China
Looking towards the Chinese Hall of Prayer at the center of China.
About the Author: Cheryl and husband Mark live in England and love to travel, particularly to Disney, and they have made numerous visits to destinations across America and Europe. They recently completed their tour of every Disney theme park around the world, which culminated in their visit to Japan, including the Tokyo Disney Resort. Click here to view more of Cheryl's articles!
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What a great article! I have also had to deal with health issues while touring Disney as I have a chronic medical condition called Chiari which can cause extreme fatigue and muscle weakness. I had no idea that there was a Passporter Guide with specific tips for this type of illness. I cope very well at Disney World; however, I have frequently wished that they would provide seating for people with special needs for events like Illuminations and Wishes. They have special areas for those who use wheelchairs but not for people like me who just can't stand for long periods of time.
Cheryl, you mentioned that the CFS had caused you to stop and smell the roses. I, like you, have been going to Walt Disney World for many years and have been a Theme Park Commando with the best of them. These days I have worn-out knees and some cardiac issues, so the pace is leisurely and, often, I use a scooter. We were there in April for four days, and the only attraction I went into or on was Mickey's Philharmagic, although I went to parks every day. I literally did a lot of "smelling the roses" as they were magnificent at Epcot and the Magic Kingdom. As well, we toured the gardens at the Grand Floridian (mostly roses). In August, I am going back with my sister-in-law who has recently had cancer therapy, and a good friend who has CFS.
We will take advantage of early mornings and evenings, staying out of hot midday sun, and mostly soak in the magical atmosphere and enjoy the resort and good dining.
Then, in September, back with my three-year-old grandson, and will take things at his pace. I love it this way as well as I ever did the frenetic old pace.
I have CFS as well. Here is the funny part: the need to sit never occurred to me. That's because I have Cerebral Palsy, too. I'm always in my wheelchair. And that got me wondering, rather than miss things where you might need to stand, like Reflections of China, or stand in line like Thunder Mountain, why not rent a wheelchair or EVC? It seems a shame to sit out these fairly accessible rides for lack of a seat.
Some attractions even have manual chairs available at the attraction, and if you only needed it for the few lines, it might be possible to request one.
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Updated 2/24/2011 - Article #477
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