Dr. Bruce Campbell is a chronic-illness educator whose information-packed website and online courses (www.cfidsselfhelp.org) build on his own experience identifying and refining the strategies that helped him return to better health after debilitation with ME/CFS.
Anything out of the ordinary - a vacation, a holiday celebration or even having people over for dinner - creates a double challenge if you are affected by the limitations of a chronic illness such as CFS and/or FM.
Non-routine events 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 balance your desire to enjoy a special event with your body's limits? Here are four strategies, a success story and a planning tool.
Take Extra Rest: Before, During and After
Perhaps the most widely-used strategy for making special events more successful is to get 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 extra rest is needed afterwards. The amount of extra rest will vary; twice as much as usual would be typical.
A member of one of our groups gave an example.
• If she is going on a one-week vacation, she plans for a two-week period.
• She makes sure that she doesn't take on any extra activities for a few days before and a few days after her trip.
• She also makes sure that she paces herself carefully during the trip, resting during her non-active times.
• After returning, she continues to take extra rest.
Another person reported a similar strategy: "It took me quite a while, but I finally realized the toll that travel and driving have on me. 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."
Plan in Detail
Another 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.
• If you are going to a family event, it 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'."
Discuss Your Plans with Others
A third strategy is to talk about your limits to the other people involved in the event.
• After deciding on your level of participation, discuss your plans with the other people involved in the event, so they know what to expect from you.
• 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.
Change Your Role
Another strategy for minimizing the cost of a special event is to change your role and level of involvement. One way to enjoy a trip or 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. Or you might go to an event, but stay two hours, rather than the whole day or take periodic rest breaks.
Travel can be made more doable by being less active than you used to be and by spending extra time resting.
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."
A Special Event Success Story
A bedbound person in our program used several of these strategies to handle a ten-day visit from her daughter and seven-year-old granddaughter.
This person, who has a severe case of CFS plus other medical conditions, was motivated to try something different because past visits had led to significant relapses.
• She prepared for the visit by reducing usual activities prior to the visit and using the time for extra rest.
• Also, she created a plan to alternate days of socializing with days of quiet rest, and explained her plan to her daughter, who accepted it.
• She spent time with her granddaughter every other day, but in a quiet way that did not overwhelm her.
• After her visitors left, she spent two days resting.
She looks back on the visit with a sense of triumph. Instead of repeating past experience, in which a family visit led to a several-month relapse, the planned 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 CFS/FMS. It absolutely thrilled me that we were able to make some special memories together without it being damaging for me."
The Special Event Worksheet
As an aid to better non-routine events, here is the Special Event Worksheet. Use it to help in planning how you will use your time during a special event and also the actions you can take in the period leading up to the event and the time after the event.
The example shows how the worksheet might be filled out for a vacation. (To view and/or print a blank form, see the Logs, Forms and Worksheets page.)
* * * *
SPECIAL EVENT WORKSHEET
Event: Family Vacation
- Double normal daily rest time for one week before trip
- No special events (e.g., nights out of house) for one week before trip
- Decide on activity limits during trip (e.g., 4 hours per day)
- Discuss limits with family
- 10-15 minutes rest every two hours while driving
- Double normal daily rest time; take more rest if symptoms high
- Maximum of 4 hours of activity per day
- Double normal rest time for one week after returning home
- No special events for one week
Note: Dr. Campbell presented much more on this subject in a CFIDS Association-sponsored webinar on Nov 18, 2010. A video of the event will be posted in the SolveCFS video archive at http://www.youtube.com/solvecfs.
* This information is reproduced with kind permission from Dr. Bruce Campbell's CFIDS & Fibromyalgia Self-Help website (www.cfidsSelfHelp.org). It is part 12 of a free 31-part text which provides the framework for a series of online group self-management courses. Dr. Campbell recently partnered with his colleague, Dr. Charles Lapp, MD, to create the new “Treating CFS & FM” website (www.treatcfsfm.org). This material is posted for information and educational purposes only and is not intended to substitute for the attention and advice of your professional healthcare team.