Note: This article is reproduced with
Dr. Campbell’s kind permission from his
CFIDS & Fibromyalgia Self-Help website.
In part 1 of this article, I discussed how you might use the idea of the energy envelope in a general way, asking whether doing something would take you "outside the envelope" or whether you are living "inside the envelope." I used the idea in that way myself at first and found it very helpful. Thinking of the envelope was a reminder both of my limits and of my ability to control my symptoms to some degree by staying within my limits.
After a while, however, I thought the concept would be even more helpful if I could understand the limits in different areas of my life. So I began to ask myself a series of questions: how much sleep do I need at night? how much daytime rest? how much time can I spend safely on the computer? how long can I stand at one time without intensifying my symptoms? how far can I walk?
Developing a Detailed Understanding
Over time, I ended up with a list of about a dozen items. In addition to those just mentioned, I included activity limits (how long I could do various activities like driving, housework, reading, and spending time with people), stressors in my life, food sensitivities, sensitivity to light and noise, and emotions. It took me at least a year to develop this more detailed understanding, but I felt rewarded all along the way because every limit I defined helped me gain more control.
Here's a sample of my energy envelope from 1998, when I had been ill for about a year and a half.
|Sleep||7 1/2 hours, starting by 11 pm|
|Daytime Rest||10-30 minutes on most days, sometimes more|
|Activity||Usually OK for activities like errands & housework, in moderation|
|Exercise||30 minutes walking OK on level ground|
|Reading & Computer||Reading OK most of time, but must limit time on computer, especially at night|
|Driving||Limit about 2 hours, sometimes tired after 30 minutes|
|Standing||Limit 1 hour, whether walking, shopping, cooking|
|Socializing||Usually OK with one person or small group but respond strongly to some people and vulnerable to stressful encounters|
|Other Illnesses||Make CFIDS symptoms 30-50% worse. Secondary illnesses are more severe now than before|
|Emotions||More easily upset than before. Strong emotions trigger CFIDS symptoms|
|Stressors||Life mostly stable at present, thankfully|
|Food||Haven't found any food sensitivities so far. Diet same as before|
|Sense Data||Noisy settings and loud noises are very bothersome, e.g. restaurants|
Later I added a section to the end of my definition, in which I noted my major limits and my greatest vulnerabilities. This section was a helpful summary of my current situation and also suggested where work might give the biggest payoff in reduction of symptoms.
I learned a lot from studying my envelope. One surprising realization was that my limits were more restrictive in some areas. During a period of time in which I thought that overall I was at about 60% of my pre-illness level of functioning, I could do only about 30% as much exercise.
I found it very helpful to share my envelope definition with selected others. Getting outsiders' views of my situation helped me to be more realistic in my self-assessment and also helped others to understand me better.
If you want to define your energy envelope in detail, you might begin by assessing yourself in the 12 areas mentioned above or use models like those provided in the success stories from Dean Anderson or JoWynn Johns. In any case, the goal is to assemble a thorough understanding of your limits, so you know what you individually have to do to minimize symptoms and increase your chances for improvement. Such a description can also highlight your areas of vulnerability and thus help you set priorities for change. Maybe improving sleep would bring the biggest payoff at the present time or perhaps a stressful relationship needs attention. Whatever your circumstances, taking a systematic approach can help you understand your unique situation.
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Developing a detailed description of your envelope is a gradual process. It may take months or even longer. But every step you take will be useful; any understanding you develop can help you feel better now. And that is the goal: to improve your quality of life now.
Learning Through Experiments
Another way to understand your envelope is by trying experiments and keeping records. I applied this approach in several areas, including exercise. Through experimenting with walking at different times of day, I discovered that exercising in the afternoon was much less likely to lead to higher symptoms than exercising in the morning. The realization led to the conclusion that time of day was crucial: when I did something could be as important as how much. When I tried extending my walks, I observed that I sometimes felt fine during the walk but experienced strong symptoms afterwards or had to take a nap later in the day. That experience helped me to realize that the effects of activity might be delayed. From that I learned that to understand my limits, I had to be attentive to how I felt later as well as during and right after an activity. I also observed that sometimes the effects of activity were cumulative, so that I might feel tired after several days of exercise at a certain level.
Two Special Areas: Stress and Relationship
I'd like to add some comments on two especially important areas: stress and relationships. Because CFIDS and fibromyalgia are very stress-sensitive illnesses, understanding sources of stress and what can be done about them is a crucial part of defining the envelope. You might list stressors in your life to identify those that place the greatest limits on you, and then try to pair them up with stress management techniques that seem to offer hope that you can interrupt the cycle in which symptoms and stress reinforce one another.
In the area of relationships, I suggest you consider three different sets of issues.
First, you might try to answer the following questions to give yourself an overall idea of your limits in the area of relationships:
How much time per day can you spend safely with other people?
How many people can you interact with at one time?
What are your limits in different settings, for example at home vs. in a restaurant?
What are the effects of different types of contact, for example email, phone and in person?
Are your limits different with some people than with others?
Second, it may be helpful to analyze specific relationships, especially those you have with the most important people in your life. Are these relationships in general supportive or tension-filled? Are others understanding and sympathetic to your situation?
Lastly, you can assess the possibility for change in relationships, either changes you make or change in others. Changes you make might include relating differently to others, changing your attitude or changing the type or amount of contact.
Your energy envelope is a description of your unique limits and therefore what you uniquely have to do to have a good day or to minimize your symptoms. It may include items such as the amount of sleep you need at night, how many hours a day you can be active, and the length and type of social contact. It is your list of things to do (and not to do) to feel better.
Dr. Bruce Campbell is a recovered ME/CFS patient and former consultant to self-help programs for chronic illness at Stanford Medical School. His nonprofit site (www.cfidsselfhelp.org) offers articles, low-cost online Self Help courses in moderated discussion group format, and free follow-up programs & support.