This article was first published in the July 2000 issue of the Lyndonville Journal - a bi-monthly newsletter from Dr. Bell's medical office that preceded the Lyndonville News (DavidSBell.com). It is reproduced here with kind permission,* and may it inspire many hope-giving plans for the coming year.
THE TRIP TO DENVER
One of the great misunderstood tortures of CFS & FM is its unpredictability. For a patient with CFS/FM told that he or she “looks great,” a pleasant compliment becomes an identity crisis. Persons with CFS/FM usually quickly learn to smile and be polite. Strangers can not – will not – understand.
But when it is impossible to know if you will be able to accompany a friend to the movies next Tuesday, the uncertainty creates a serious social problem. How is one with CFS/FM able to make predictions when each day can be so different?
Let’s take the example of being asked to go to the movies next Tuesday by an old friend, in town for a week.
The first rule of managing this problem is “Do not whine.” In New Zealand I am told the equivalent phrase is “Do no bleat.”
There are two good options to the dilemma: Either go, have fun, and don’t complain; or don’t go and don’t complain. In the jargon of new age medicine this is called a “positive attitude.”
It is first necessary to decide the possible consequences of the proposed activity. Perhaps it is out of the question - like taking a long hike on the Appalachian Trail. In that case, make a polite excuse and decline. Too bad… maybe someday.
If it is within the realm of possibility, next decide if it is worth whatever payback may occur in terms of the next few days.
Something like the movies may not be a bad payback unless you have noise sensitivity, as many patients with chronic fatigue syndrome [ME/CFS] and/or fibromyalgia do. The sound level in the theaters is designed to push brain tissue out your ears.
Should you decide it is worth the possible payback, next make some plans. You may want to rest in the afternoon before going out.
And finally, have an escape plan.
If on that day the planned activity is impossible, be able to cancel out without feeling guilty. Hey, things change. Friends should be able to accept that without it being a big deal. The more the friends understand the intricacies of CFS/FM, the easier it becomes.
I think the greatest problem for CFS/FM patients is to underestimate their abilities, probably because of some bad experiences in the past. One patient told me that while she was trying to ignore CFS and be "normal," she stood in line in the hot summer sun at an amusement park. The day was so exquisitely painful that she did not dare to risk it again.
But I do not think the problem was going to the amusement park in the first place. It was not having an escape to employ if things started getting rough. Go to the amusement park with your friends and children in two cars, and if it gets to be too much, go home. Your friends should not accuse you of wimping out.
Understand the consequences of what you do.
If the consequences are great, you may not want to do it. But don't complain. The whining usually comes from feeling powerless. It is a begging for mercy that very few people tolerate, let along grant. It makes strangers feel bad because it makes them feel guilty about not being able to help and not being sure of whether the difficulty is genuine. True friends can accept whining because they disregard it and pay no attention. That's what friends are for.
But let's take it a little further. It may even be good for patients to plan a stressful event.
Something special. Something just for themselves. Perhaps something off in the future, but something really great. At first blush, this suggestion sounds insane. But think about it; think about taking a trip to Denver.
"Mary" decided last year to visit her son in Denver, a three-day car ride. The preparations for the trip began a year earlier with telephone conversations and planning. She and her husband borrowed a car where Mary could lie down and sleep comfortably. They were in no hurry. If they needed to stop at motels they had extra days.
The trip was difficult, but wonderful. It caused changes in Mary that no medicine could accomplish.
She did something for herself instead of just trying to catch up on the cleaning, shopping, and many other responsibilities her guilt told her she was not living up to. She had an escape plan, the motels and comfortable car where she could rest. There was no stress or pressure. Even if they didn't make it all the way it would have been worthwhile. And she got out of the house for the first time in a long while.
I think it is important for persons with CFS and/or FM to set high but realistic goals. Otherwise life becomes despair, filled with discarded, broken dreams. Dreams of running the marathon, of being SuperMom, of camping in the Adirondacks with the children. The broken dreams, daily discomfort and loss of hope can only create despair. CFS/FM may not be a result of free will, but despair may be.
Think of what you would most like to do.
Make it something that is possible with the right planning and built in escape plans. Perhaps it is visiting a quilt museum in Pannsylvania. Perhaps it is seeing Paris, or visiting your son in Denver. Like the ad says, "Just do it!"
The despair that fills daily life must be balanced by hope. Referring to hope and despair, Saint Francis is said to have commented, "Our souls sail and careen between these two precipices." (Nicos Kazantzakis)
- Dr. David Bell, MD, FAAP, July 2000
* Reproduced with kind permission of the author from the paper archives of the Lyndonville Journal, © Bell, Pollard, Robinson, 2000. All rights reserved. See Dr. Bell’s website to sign up for its e-successor, the Lyndonville News (www.DavidSBell.com).