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Taking a Summer Vacation When Your Child Has CFS

Two columns published in Lyndonville News, July 1999



From Jean's Desk

Jekyll Island Was a Childhood for Our Children and Our Salvation

Jean Pollard

As I mentioned in a recent newsletter, my four children got CFS back in 1985. Prior to becoming ill, we were one of those families that felt it was important to do things as a family. We wanted to expose our children to different sorts of experiences. We went to museums, camped in the mountains, went for long drives, you get the picture. In the spring of 1985, I remember we sat down one Sunday afternoon and wrote a long list of things we wanted to do over the coming years, places we wanted to visit. I grew up in Lyndonville, but was born in New York City where my mother's family was from. Every year my relatives took me to Madison Square Garden, Rockefeller Center, Times Square, Jones' Beach, etc. I wanted my children to have the same opportunities. Anyway, we made our list that spring and looked forward to places and things to do together.

Then November 1985 hit. All four daughters became ill with a mono-like illness, which was devastating. Forget going anywhere for a long time. The idea of a family outing was unthinkable. They were housebound, did not go to school for several months at a time. The curtains were drawn to darkness because of their light sensitivities, the TV or radio was turned low and reading or playing was out of the question except on a rare good day. They were so sick that leaving the house was almost unbearable. The only thing that became a constant thread in our life was a family trip to Jekyll Island, Georgia. It was more for my sanity than to call it a vacation. My older brother had encouraged us years before, when my children were only babies, to visit this place. It became my time away, my only oasis in a nightmare that had no end. I am sure that we were criticized for dragging these poor, sick kids into a car for a long 20 hour ride to the south. We would save money all year (obviously, we did not spend too much through the year since we did not go anywhere), stay in the same motel and the kids could sit on the beach and rest in the room. We would eat in the room and the kids made friends there with others who came back every year as well.

This year marked our 22nd year of going to Jekyll Island. However, I want to tell you that I had no idea until this year how much that "vacation" has meant to my children. My daughters are all grown now, married and raising children of their own; we have the empty nest. One of my daughters, who had not been able to join us in Jekyll for 5 years due to college and job commitments, spent a few days with us this year. I almost cried when she sat down on the couch with me, put her head on my lap, and told me that the best memories from her childhood were these wonderful memories of Jekyll. Sick or well, she had this one thing constant to look forward to every year.

On her thirteenth birthday, along with her twin sister, and younger sister, we elected to have a lymph node biopsy for the Center for Disease Control (CDC). It was the only date the surgeon in Rochester, NY could schedule this operation and, of course, the CDC was asking us to do this so they could justify coming to Lyndonville and investigate their illness. They had now been ill for 1 1/2 years and we would do anything to expedite a treatment for them. The girls were hospitalized for 10 days and on intravenous therapy of antibiotics right up until the day we left for vacation. As the day drew near that we were supposed to leave, we became a little panic stricken. The girls were very sick, in pain from the surgery, not moving all that well from the incisions and anxious to get out of the hospital. Dr. Bell at last made the decision to discharge them. We packed the car and literally drove away. Crazy? Probably. However, when my daughter, Meg, announced this spring how much she had needed our "oasis," it was worth it. They could hide their illness a little on vacation. They were still sick, but nobody knew them. If they wanted to take it easy, everyone just thought they were kicking back on vacation. No excuses, no need to explain anything to anyone.

I realize that not everyone is going to be able to take a vacation such as mine; however, the point I am trying to make is that you need to have some sort of enjoyable experience that you can remember. You all need a place that will live in your memory as an "oasis" while experiencing a terrible illness such as CFS. It does not have to be expensive or far away, just something that will bring a smile to your face during a difficult time. Even now, during a particularly bad day or (God forbid, a relapse of several days), a mental holiday of remembering a wonderful time that was, can bring a level of happiness to you. It could be a park near your home where you spread a blanket out and have a picnic and feed the birds. It can be a drive around at Christmas time to look at the lights. You can get a wheelchair and go to pet store, buy a small aquarium with some fish and shop for the supplies. Go to any special place; make it an event that will become a special memory. It is important, believe me...and I never realized how special until this year. 13 years later...it still is an "oasis" from a nightmare that never seemed to end. DO NOT let this illness rob you or your family members of everything. Make something good happen and you will be glad you did.



The Parent's Corner

Vacations With A New Mindset

Mary Robinson, MS Ed

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:

  1. 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."

  2. 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.

  3. 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 ½ 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.

 

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