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By Bruce Campbell

Note: First in a series offering an introduction to pacing via three success stories about people in our program.

 

For several years, Rose, who has severe ME/CFS and other medical issues, had annual visits from her daughter and granddaughter. Their stays as houseguests resulted in relapses for Rose that lasted up to six months.

 

The heavy price she paid motivated her to try something different, so when another visit was due, she decided to use some strategies for handling non-routine times that we call Special Events.

This term refers to non-routine events, which include vacations, holiday celebrations, moving and remodeling, having dinner guests or houseguests or even, for people with severe MY/CFS, leaving the house for any reason or, in Rose's case, having houseguests.

 

We have found a combination of three strategies are helpful for enjoying Special Events while avoiding relapses:

 

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.

 

2) Detailed Planning

Plan the special event in great detail. If you are traveling, this may include laying out your activities for each day, including alternate activities you can do if your energy level is not what you expect.

 

3) Discussion

After deciding on your level of participation, discuss your plans with the other people involved, so they know what to expect from you and to get their ‘buy in’.

 

Rose applied these strategies to the visit from her daughter and granddaughter. She did three things before their arrival. 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 in turn explained it to her daughter.

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.

Instead of a family visit leading to a several-month crash, it was an experience of control through pacing. Rose explained, "I had never even come close to surviving a visit from my granddaughter since developing ME/CFS and FMS. It absolutely thrilled me that we were able to make some special memories together without it being damaging for me."

 

Update: Rose has used the same strategies for four years to manage visits by her daughter and granddaughter, and has always gotten the same result.

 

 

Rose’s experience before using pacing is a good example of Post-Exertional Malaise, also called PEM. One of the defining characteristics of ME/CFS is that overexertion leads to an intensification of symptoms, though the onset of higher symptoms may be delayed by hours or even a day or more.

The key fact is that the increase in symptoms is out of proportion to the overdoing. For Rose, the effects of overdoing from having houseguests was a several-month relapse.

 

Pacing means finding the limits imposed by ME/CFS or FM, adapting to them, then extending the limits as allowed by the body. Post-exertional malaise is the result of going outside limits and the cost is out of proportion to the overdoing.

 

Rose's two different experiences with houseguests, one without pacing and one with pacing, illustrate that how you live your life with ME/CFS and FM can have a big effect on your symptoms.