Vacations With A New Mindset

By Mary Robinson, MS Ed
updated on 06/20/2007 at 11:06AM

Article reproduced from The Pediatric Network

If you have just read Jean's column on Jekyll, I think you will agree that once CFS strikes your family you may find yourself rethinking the idea of vacations. If your family were avid hikers in the wilderness before CFS, then this will probably not be your ideal vacation now. But this does not mean that you have to give up taking a break once in a while. Flexibility and Mindset are two of the words you need to take to heart in your planning. Hearing about Jean's family vacations to Jekyll Island each year has pushed me to make vacations a part of our family life. I am sharing some ideas I have gathered on how to make the excursions a reality.

In NY State we are in the throws of summer vacation with the temperatures in the 80's to 90's. It is sticky and humid and school is out for the summer. My family takes summer vacations seriously and our lifestyle changes during these few months of heat. We decided several years ago that summer was not a good time to be away on long hot vacations. So we chose then to put our money into a backyard pool. We had found that our children with CFS could enjoy prolonged activity in the pool without the usual paybacks. Dr. Bell felt that due to the constant water pressure on the body when in the pool, their blood didn't collect in the extremities causing the usual problems associated with Orthostatic Intolerance. Whatever the reason, we were thrilled that they could enjoy a bit of "normal" childhood activity. So now most of our summer vacations center around our pool and our deck. We are also fortunate to be able to enjoy weekends at our family cottage on Lake Ontario where we can visit with extended family each weekend, and enjoy time away from home without the long drive.

If your child is so ill that they are truly bed-bound, then consider a vacation without leaving home. Change the surroundings for your child and create an imaginary escape. Buy a bright pastel colored spread for the bed. Decorate the walls with posters or pictures of places they'd like to see. Grace the walls with a picture of a dirt road winding through the trees, or a sailboat moving along to a gentle summer breeze. Together you can travel the road and spin yarns of imaginary adventures that you encounter on your journey. You can plant a small windowsill garden to water and watch grow and imagine seeing it on your journey. You can take a "vacation" from life, right in your home if that is all you can manage. I have been a part of several "virtual vacations" on line where people meet at their computers and go places together in their minds. The imagination is a powerful tool, and by helping our children to use it we can help them to escape for a little while.

My children are fortunate to really wax and wane with the seasons, and my husband and I are fortunate to be in good health, so we are able to plan some real escapes away from home. Vacation planning has changed though since the kids got sick. In general, we no longer plan trips that require a lot of driving, or walking. We leave the hectic, fast-paced vacations to our memories and opt for slower easier more flexible outings. When planning this article I wrote to a half dozen parents of children with CFS for their ideas. Several have CFS themselves, but all wrote back with basically the same ideas. Flexibility is key as well as attitude and mindset. Vacations now center on "getting away" not prolonged excessive new activities. It is not important to go somewhere and see everything. It is important to go. I am in total agreement with my friend, who wrote, "We just lessened our expectations or rather redefined the vacation to be a time to relax and not do much. It was quality family time for all."

Some of the ideas that these Moms wrote to me were:

Meeting other families with CFS at hotels midway between their homes. One mom wrote, "We met up with one of our daughter's penpals and let the girls just hang out in the hotel. They loved seeing each other in person and we enjoyed meeting the other family and getting the support and there were no expectations to do anything at all."
3 moms mentioned vacationing at a cabin in the woods instead of a hotel in the city. Spending the days watching the wildlife scurry about, and the clouds float by can be the most ideal way to escape and rejuvenate. This is much like Jean said about their vacations at Jekyll Island on the beach. The girls could hang out on the beach or in the motel room. But it was quiet and at their pace.
If you are staying at a hotel, make sure it is close to places you plan to visit. Do not save a few dollars on accommodations that leave you with a Â½ hour drive to any destination. See if you can find a room with a small refrigerator or even kitchen accommodations so you can keep food in your room. Sometimes the cost of a small suite is only a bit more than a room.

Other tips that I have learned and gathered are:

Carry water in a small insulated jug. In our family we each own water bottles ranging in size from 16-32 oz. with shoulder straps on the insulated holders. Before an outing we fill the bottom inch or two of each jug and freeze it. Then when we leave we fill the remainder with cold water and it stays cold most of the day. They now have misty mate coolers that are about 1 Liter in size and strap to your waist. They fill with water and have a tiny hose, which lets off a fine mist when turned on. (Our daughter keeps hers by her bedside to use at night as well.)
Carry small snacks in a belt bag.
Take a wheelchair to conserve energy and make or buy a carry all to go on the handles.
Get a handicap parking permit if you do not already have one.
Take enough medicine for your stay and a few extra days in case you get stuck. Also remember other over the counter medications for such things as upset stomachs, sore muscles, sore throats, etc.
Talk to your child about their expectations. LISTEN to them on what they think THEY can handle. If they know that you care and understand that their needs are different than the healthy family members and that they will not spoil the fun for all if they need a break, it will make for a nicer holiday for all. If all members of the family realize that flexibility is the key to the family get-away, it will be a nicer time for everyone. Take downtime activities with you such as a deck of cards, books, art materials, anything your child can do if resting in the room is all they can manage.
If you will be staying with or visiting friends, be sure they understand your vacation plans and priorities. You do not want to be like the mom who stated, "Being dragged around Seattle by a family still in denial about the post-exertional fatigue still brings tears to my eyes.

There were a few warnings people offered to me. Flying makes some people with CFS very ill, while extended driving may bother others. Hotel rooms are fine for many, but the fumes from cleaning supplies may set off symptoms in people with Multiple Chemical Sensitivities. Still others warned of not over planning, as the setbacks may be more than you bargained for. This is why it is important to talk to your child and see if your expectations match theirs. My children know there is a price to all activities, but they are the judges of how much they want to pay. The memories are often worth more to them than the setbacks they will most likely suffer.

With all this in mind, I say, stop worrying and plan that day or week away. In my family CFS made us cancel our plans to take the family to DisneyWorld 4 years ago. As the kids got older they kept asking when we were going. We kept worrying that the trip would be too much with CFS in our family. But we finally decided to stop being scared and start being realistic. We chose a time of year that is best for our kids which is early Oct. My husband arranged to get off of work and the kids out of school. We will fly, not drive, and we'll stay right at the Disney Resort. We plan to rent a car so that our daughter can get back to the room quickly and frequently if needed. She'll have her wheelchair, which will guarantee us shorter waits in the lines and we are already planning for lots of downtime, and lots more relaxed time than most that visit Disney receive. Our kids are thrilled, and we are optimistic that with careful and realistic planning our vacation of a lifetime, will be a success. If you have any tips for us though, please share them with me at CFS-DSBELL@juno.com.

Jean said it all in her article in this issue. You can't let CFS stop you from taking family vacations. It is the one high point in her family's memories. I want my family to have those memories. Relaxed summers by the pool, and the cottage and the promised trip to the Magic Wonderland- DisneyWorld! CFS can rob my children of many things but I will not let it rob them of vacation memories as well.

The Parent's Corner
Vacations With A New Mindset by Mary Robinson, MS Ed
http://www.pediatricnetwork.org/parenting/parentscorner/LN99-vacations.htm
(Published in Lyndonville News, July 1999)

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