Managing Vacations and Other Special Events
By Bruce Campbell
(From the series Pacing: What It Is and How To Do It.)
Pacing is a challenge during normal times, but can be especially difficult for non-routine events, which include vacations, holiday celebrations, moving and remodeling, having dinner guests or houseguests or even, for some people, leaving the house for a doctor's appointment.
Such special events create a double challenge if you have ME/CFS and/or FM. First, they require more energy than normal daily life. For that reason, they can pull you outside your energy envelope, intensifying your symptoms.
At the same time, you may want to be more active than usual or feel pressured by others to be more active, a second potential cause for a relapse. How can you enjoy such events and avoid a relapse?
We have found that three strategies are helpful in meeting the challenge of special events.
1) Take Extra Rest: Before, During and After
The first strategy for minimizing the cost of a special event is to take more rest than usual: before, during and after the event.
Store up energy by taking extra rest before the event; limit symptoms by taking extra rest during; and take whatever rest is needed afterwards. The amount of extra rest will vary from person to person; twice as much as usual would be typical.
A member of one of our groups gave an example. She wrote, "For a week or so before a trip, I double my normal daily rest time. I spend more than usual amounts of time resting while on vacation, and extend the practice for several days after returning. Also, I have had good success in reducing the effects of driving if I stop every two hours, tilt the seat back and snooze for 10 or 15 minutes."
2) Plan in Detail
The second strategy is to plan the special event in great detail.
If you are traveling, this may include planning your activities for each day of the trip, including alternate activities you can do if your energy level is not what you expect.
Depending on the severity of your condition, you might also arrange for a wheelchair or motorized cart in airports or when visiting places such as museums. If you are going to a family event, planning might mean finding out the schedule ahead of time and deciding how much activity you will have.
One person in our program explains how planning has enabled her to stay within her limits while traveling. She says, “Making a commitment to myself to stay within a safe activity level has helped me resist the temptation to do too much when on the road. I can say to myself, ‘I know you want to do this and people are pressuring you, but you decided before you came that this wouldn’t fit into your envelope’.”
One way to enjoy a special event is by passing tasks on to others. For example, if you are accustomed to doing all the cooking for a holiday celebration, ask family members to each bring a dish. Another adjustment is to go to an event, but not stay for the whole thing or take periodic rest breaks.
These adjustments to activity are based on accepting a lower activity level and appreciating what you can do. As one person said, “I have benefited from the idea that half a loaf is better than nothing...Even if I haven’t been able to do everything I did before becoming ill, making compromises has enabled me to participate at times somewhat outside my envelope so that I increased my symptoms somewhat but didn’t suffer a bad flare-up.”
3) Discuss Your Plans with Others
Third, after deciding on your level of participation, discuss your plans with the other people involved in the event to gain their understanding and cooperation. You might also alert them to the possibility that you may need to cancel out of some events and encourage them to do things without you at times when you need extra rest.
If you discuss your limits and the unpredictability of symptoms with others ahead of time, you can reduce the chances disappointment and create a climate of flexibility.
One person in our program commented that learning assertiveness has been crucial to her family's acceptance of her FM. She explains that "for a long time, I told my family that I had a serious condition, but I also always said Yes to their requests. They didn't start to honor my limits until I put limits on what I would do for them."
The comment suggests that successful adaptation to ME/CFS or fibro involves not just altering what we do, but also how we think. A big part of mental adjustments is changing our self-talk (the things we say to ourselves silently).
For example, one person reported that she grew up with a message in her head, "I always finish anything I start." Once she had ME/CFS, doing that led to relapses and that led her to replace "work until done" with "I rest when tired."
Special Event Success Story
So how do these strategies get implemented and do they help? Here’s an example from Rose, a person who was bedbound with ME/CFS during the period in which the events below occurred. though she later improved substantially.
For several years during the time she was bedbound, annual visits from her step-daughter and step-granddaughter had triggered relapses that lasted up to six months each. The heavy price for those visits motivated her to try something different and taking our pacing class provided her with an opportunity to use our special event strategies to structure the visit.
She did three things prior to the arrival of her relatives. First, she reduced her usual activities for several days ahead of time, using the time for extra rest. Second, she created a plan for the visit. It involved alternating a day of socializing with a day of rest and also changing how she spent time with her granddaughter.
In previous visits, Rose had felt overwhelmed by the granddaughter's high energy level, so she decided to structure their time together so they engaged in quiet activities. Third, she discussed her plan with her daughter, who agreed with it and in turn explained it to the granddaughter.
Rose was successful in implementing her plan during the visit. After her visitors left, she spent most of two days resting, then returned to her normal activities. No relapse!
Instead of a family visit leading to a several month relapse, it was an experience of control through pacing. She looks back on the visit with a sense of triumph. Instead of triggering another serious relapse, this family visit was an experience of control through pacing.
About her time with her granddaughter, she wrote, "I had never even come close to surviving a visit from my granddaughter since developing ME/CFS and fibro. It absolutely thrilled me that we were able to make some special memories together without it being damaging for me."
Rose used the same strategies to manage other visits by her daughter and granddaughter, including a much longer visit that occurred three years after the initial success.
The message from Rose's experience: Just as the consequences of overactivity are out of proportion to the overdoing, the rewards of pacing can be out of proportion, too, in the other direction.
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