Re: [HeidiLiane] Excerpt From the CFIDS & Fibromyalgia Self-Help Book: The Energy Envelope

[Guest guest]

Sandie: What an AMAZINGLY helpful and complete excerpt from the Self-Help Book. Everyone with these illnesses would benefit from keeping this article and buying the book to keep on hand.

Many thanks,

S.

[HeidiLiane] Excerpt From the CFIDS & Fibromyalgia Self-Help Book: The Energy Envelope

Excerpt From the CFIDS & Fibromyalgia Self-Help Book: The Energy

Envelope

ImmuneSupport.com

10-15-2004

The CFIDS & Fibromyalgia Self-Help Book

By Bruce , Ph.D. Director of the CFIDS/Fibromyalgia Self-Help

Program

Reprinted with permission from the CFIDS/Fibromyalgia Self-Help

Program: CFIDSselfhelp.org.

Chapter 5: The Energy Envelope

Many people with CFIDS and fibromyalgia feel caught in a vicious

cycle of push and crash, swinging between overactivity and rest.

Their symptoms and their reactions to them interact to keep them

caught in a frustrating loop. When their symptoms are low, they push

to get as much done as they can. But doing too much intensifies their

symptoms and so they crash. The high level of symptoms leads them to

rest in order to reduce discomfort. This is usually successful; rest

reduces their pain, fatigue and other symptoms.

But then another cycle begins. Feeling frustrated at all they didn't

do while resting, they plunge into another round of overactivity to

catch up. This in turn causes another intensification of symptoms, so

they experience another crash. Living in response to symptoms, they

are caught on a demoralizing roller coaster in which high symptoms

alternate with periods of extended rest, and they feel out of

control. This cycle can be especially frustrating for CFIDS patients

because they often find that even apparently small amounts of

activity trigger a disproportionate increase in symptoms.

Unfortunately this phenomenon, called "post-exertional malaise" or

excessive fatigue after activity, is one of the most common features

of the illness.

The Push/Crash Cycle

Living Within Limits

This chapter proposes an alternative to the cycle of push and crash,

a way to bring stability to a life with chronic illness. This

alternative is based on the idea that illness imposes limits. People

with CFIDS and fibromyalgia have less energy than before becoming

ill, plus other limits created by symptoms such as pain and poor

sleep. The limitations range from relatively small disruptions of

life to severe restrictions that render people housebound.

Fighting against or trying to ignore those limits usually produces an

intensification of symptoms. Finding and honoring limits offers a way

to gain some control. The key concept is that what you do has an

effect on your symptoms, reducing them if you honor the limits or

intensifying them if you don't.

You can imagine your limits using a variety of ideas. In our class,

we use the concept of the energy envelope. I'll explain it and also

describe three other ways to think about limits.

The Energy Envelope

You can think of your situation as having three elements. Your

available energy is the energy you have to accomplish things. This is

your energy envelope. It is limited and is replenished by rest and

food. The second is your expended energy, the energy you lose through

physical, mental and emotional exertion. The third is your symptoms,

fatigue, brain fog, pain, and so on.

In this view, if you expend more energy than you have available, you

will intensify your symptoms. This is called living outside the

energy envelope. This approach commonly leads to the cycle of push

and crash. An alternative is living inside the energy envelope. If

you keep your expended energy within the limits of your available

energy, you have a chance to reduce symptoms, and, over time, may be

able to expand your limits.

Many students in our program have found it helpful to think of their

life using the idea of the energy envelope in this way. To explain

higher than usual symptoms, they say something like: "I was outside

my envelope this week." Statements like this can help people hold

themselves accountable for the consequences of their actions and also

imply the possibility of control. If you can live differently, you

may be able to control your symptoms.

The Fifty Percent Solution

A second way to honor limits is called the Fifty Percent Solution,

described by Collinge. Each day estimate how much you think

you can accomplish. Then divide this in two and aim to do this lesser

amount. Rather than challenging your limits, you discipline yourself

to a safe level of activity. The unexpended energy is a gift of

healing that you give your body.

Your Energy Bank Account

A third way to think about limits is to imagine your energy as money.

Imagine that your energy is stored in an energy bank account, which

has a very low balance. While healthy people are able to store up

energy for a day's activity with seven to eight hours of rest at

night, people with chronic illness may get only a few hours of energy

from a night's rest. That makes it easy to spend more energy than you

have and thus "overdraw" your account. There is often a big "service

charge" in terms of intense symptoms if you overdraw your account.

Once you're overdrawn, you have to deposit more to your account in

the form of rest. Alternatively, if you budget your time to control

how much energy you spend, you can save some energy for healing.

The Bowl of Marbles

The fourth approach is to imagine your available energy as a bowl of

marbles. (See Frame's discussion in the Arthritis

Foundation book mentioned in the references.) This image may be

helpful if you like the idea of visualizing your limits. If so,

imagine your available energy as marbles in a bowl. The number may

vary from day to day, but for each day you have a limited number of

marbles to use. With every activity, you mentally take one or more

marbles out of the bowl. Some projects take more marbles than others.

Also, the same task may require more marbles on bad days than on good

days.

Physical activity uses up your supply, but mental and emotional

activity use them up also. For example, if you feel frustrated about

how few marbles you have, the frustration will take some marbles,

too. So if you can reduce your frustration, you will save some

marbles for other uses. Stress is a big marble-user. Whatever you can

do to lessen stress will preserve your supply of marbles.

Visualizing your available energy as a bowl of marbles can help you

set priorities. You probably don't have enough marbles to do

everything you want to do. Also, some days are more draining than

others. Visualizing an empty bowl may help you give yourself

permission to take some time off.

Finding Limits

The rest of the chapter offers a variety of tools you can use to

define your unique limits. If you are satisfied for now having a

general idea of limits, you might skip on to the next chapter, which

describes strategies for getting off the roller coaster. If you are

looking for ways to understand your envelope in detail, read on.

Charting Your Envelope

You can get a general idea of whether your current activity level is

appropriate by spending a few minutes a day for a week charting your

limits using the Envelope Log*. This simple form can help you

understand the relationship between your limits, your activity level

and your symptoms.

Scale: 1 = no energy, no activity or no symptoms 10 = energy of

healthy person, high activity level or worst symptoms imaginable

To use the form, rate yourself on a scale of 1 to 10 for three

elements:

a) Energy level (available energy) Activity level (expended

energy) c) Symptom level

On this scale, 1 represents, respectively, no energy, no activity or

no symptoms, and 10 represents the energy you had when healthy, a

high activity level or the worst symptoms imaginable.

You can fill this out once a day or more frequently. Using it three

times a day can help you see variations in your energy level and

symptom level. You might find, for example, that your energy improves

and your symptoms decline as the day goes on or vice versa.

The sample shows the form filled out for three days. Mornings are

difficult for this person. Most days the "am" reading for symptom

level was moderate to severe. It also shows the push and crash

pattern. On the first two days, the person kept her activity level

within the limits of her available energy. Her symptom level dropped

as the day progressed. Feeling good on Wednesday morning, she tried

to make up for the days spent resting by "catching up." The result of

her overactivity was a severe level of symptoms starting in the

afternoon.

Establishing Limits One Activity At a Time

Another technique for determining activity limits is to establish

your limits one activity at a time. You may know that you get tired

if you spend too long fixing meals, for example, or after doing

errands or housework, or after talking to people. But you may not

know when "too much" arrives. A way to answer the question is to

focus on one activity at a time, keeping a simple record of time

spent and symptoms.

For example, you may believe you can stand in the kitchen for 10

minutes while fixing meals. To test this idea, note your starting and

ending time while preparing food, and how you feel during and after.

If you find you are worse, 10 minutes may be too much. If you feel

OK, you may be able to extend the time.

If you feel worse, it's important to understand why. If you are

feeling weak or lightheaded, you may have exceeded your limit for

standing. In that case, you have learned something important that

applies to many situations. If you are in pain, you may have exceeded

your limit for repetitive motion or may have held a tool

inappropriately.

Establishing Overall Activity Limits

A good strategy for determining your overall activity limits is to

keep a health diary or log. Record keeping gives you a way to record

what you do from day to day and to see the consequences. It helps you

recognize linkages between activity level and symptoms. We will look

at logging in detail in Chapter 7. For now, I'd like to make some

general comments.

Record keeping can help you in various ways. A simple diary can show

you how many hours of activity and what types of activity you can do

safely in a day. It can help you determine whether the effects of

your activity are cumulative over several days or a week, and whether

there is a delay between when you do something and the time you feel

the effects. Also, records can help you determine whether some

activities are more tiring than others. Some patients, for example,

have difficulty with exercise, while others become nauseous after a

short time on the computer, and still others become ill if they drive

more than short distances. In short, record keeping can help you

understand the many factors that contribute to your symptoms.

Self-observation can also help you become aware of the effects of

mental and emotional events, as well as physical activities. Many

people with CFIDS and fibromyalgia find themselves easily tired by

activities that require concentration, like balancing a checkbook,

reading or working on the computer. Emotional events can be

especially tiring.

Record keeping can help you recognize subtle links as well. For

example, some patients have observed a surprising connection between

their activity level and sleep. They find that if they are too active

during the day, they sleep poorly at night. This is the opposite of

what might have been true before they became ill, when lots of

activity could produce a fatigue which led to a good night's rest.

Counterintuitive realizations like this often come to light only

through careful observation.

Developing a Detailed Understanding

While the general idea of honoring limits can be helpful, you may be

able to gain further control over your illness by developing a

detailed understanding of your limits. Such an understanding can give

you a thorough knowledge about what you have to do to minimize

symptoms and increase your chances for improvement. It can also

highlight your areas of greatest vulnerability, and thus help you set

priorities for change. You may discover, for example, that good sleep

is crucial to controlling symptoms or that minimizing stress has a

dramatic effect on how you feel. Whatever the specific factors in

your situation, this approach can help you recognize them. You can

use your detailed understanding of your unique limits to improve your

quality of life.

Developing a fully detailed description of your limits is a gradual

process. It may take months, a year 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.

One way to understand your unique limits is to ask yourself the

questions in the next several sections. (You can record your answers

on the Energy Envelope form, available for printing in pdf form.)

What you find can give you a fresh perspective on your illness. You

might discover, for example, how many hours a day of activity you can

tolerate or how many times a week you can leave the house safely.

Alternatively, you might use your answers to help you set new

priorities. You might decide that poor sleep was the crucial issue

for you. Then you could focus on getting good rest, in the hope that

it could help you control your symptoms. Or you might find that a

stressful relationship needs attention. In any case, the idea is to

begin a process that will lead eventually to an answer to the

question: What can I do without intensifying my symptoms?

Everyone has a different set of limits, one that depends on their

unique medical circumstances and their individual life situation. The

limits you experience will be different from those of other people

with your illness. Also, limits in some areas of your life will

probably be less strict than those in other areas. And your cushion

may vary from one area to another. "Cushion" is the margin of error

we have. Some people find that even small mistakes in some areas of

their lives bring on a severe, disproportionate intensification of

symptoms.

We will look at limits as a combination of five factors:

Illness Activity Sleep and rest Feelings and Moods Stressors

Illness

This factor refers primarily to the severity of your chronic illness

or illnesses. The pattern and strength of your CFIDS and/or

fibromyalgia symptoms determine your safe level of activity. To get a

good initial idea of a safe activity level, place yourself on the

CFIDS/Fibromyalgia Rating Scale. As a reality check, you might ask

someone who knows you well to rate you, too, and compare the two

ratings.

The illness factor also refers to the presence of other illnesses and

to the interactions between your CFIDS or fibromyalgia and other

illnesses. Having multiple medical problems complicates living with

CFIDS or fibromyalgia. If you have other ongoing illnesses besides

CFIDS and/or fibromyalgia, record them on the form, too. Also, short-

term illnesses may interact with CFIDS and fibromyalgia. One common

pattern is for symptoms to be intensified by other illnesses,

although sometimes there is a delay, so that CFIDS or fibromyalgia

symptoms flare up as the acute illness is waning.

Activity

This factor refers to how much you can do without making yourself

more symptomatic. We will discuss activity in three areas: physical,

mental and social.

Physical activity means any activity involving physical exertion. It

includes things like housework, shopping, standing, driving and

exercise. To define your limits in this area, estimate how many hours

a day in total you can spend in physical activity without

intensifying your symptoms. Because the effects of exertion can be

cumulative, you might ask yourself how many hours a day you could

sustain over a week without worsening symptoms. Also, you can note

whether some parts of the day are better than others. Some people

find activity may be safe during "good" hours of the day, but produce

symptoms at other times. Then estimate how long you can do various

specific activities such as housework, shopping, standing up, driving

and exercise.

Mental activity means activities requiring concentration, like

reading, working on the computer or balancing a checkbook. Two

questions to ask in this area are: How many hours per day can I spend

on mental activity? How long can I spend in a single session? Some

people, for example, find they can work at the computer for 15

minutes or half an hour without problem, but that they experience

symptoms if they work longer. They may be able to avoid triggering

brain fog or other symptoms if they have two or more brief sessions a

day rather than one long one.

Social activity refers to the amount of time you spend interacting

with other people. We suggest you think of social activity in two

forms: in person and by phone. Questions to ask yourself about each

type include: How much time with people is safe for me in a day? In a

week? Is the amount of time dependent on the specific people involved

and the situation? (You may tolerate only a short time with some

people, but feel relaxed around others.) For in-person meetings, you

might also ask yourself whether the setting makes a difference.

Meeting in a public place or with a large group may be stressful, but

meeting privately or with a small group may be OK.

Sleep and Rest

This factor refers to the quantity and quality of both sleep at night

and rest during the day. In terms of sleep, it is the answer to

questions like: How many hours of sleep do I need? What is the best

time for me to go to bed and to get up? How refreshing is my sleep?

Daytime rest means lying down with eyes closed in a quiet

environment. Questions in this area include: How many hours of

daytime rest do I need? How many rest periods do I have? How

refreshing are my rests?

Feelings & Moods

This factor refers to the emotions we feel, especially worry,

depression, anger, and grief. Questions in this area include: What

emotions are important in my life right now and how intense are they?

This factor also refers to the sensitivity we have to emotionally

charged events and people. Some situations may trigger stronger

reactions in us now than when we were healthy. These reactions may

intensify symptoms because emotionally charged events can trigger the

release of adrenaline, which often worsens symptoms.

Stressors

This category refers to the sources of stress in our lives. Three are

crucial: finances, relationships, and physical sensitivities.

The financial situations of patients vary enormously. Some find their

financial situation to be similar to what it was before becoming ill.

For them money may not be a stressor. For others, however, financial

pressures can be great, even overwhelming. Some may live alone with

little income. Getting disability insurance may be a long and

stressful ordeal. Even those who succeed worry about losing it.

Others feel forced to work when their bodies are asking for rest.

Having a chronic illness changes relationships, creating new

obligations and also new strains and frustrations. Your family and

friends may or may not understand you. In sum, relationships can be

great sources of support and help, sources of stress, or both.

Physical sensitivities include sensitivity to food and other

substances, vulnerability to noise and light, and sensitivity to

weather and the seasons. Questions in this area are: Do I have

allergic reactions to food? Am I chemically sensitive? Am I sensitive

to sensory overload: noises, light, or stimulation coming from

several sources at the same time (for example, trying to have a

conversation with music playing in the background)? Am I affected by

the seasons or changes in the weather?

Summary, Vulnerabilities and Goals

You will find at the end of the Energy Envelope form three sections

that can help you pull together what you have learned and plan for

the future. The first, titled Summary, gives you a space to summarize

in one or two sentences how you are doing at present.

The second, Vulnerabilities, asks you to focus on the factors that

make your symptoms worse and those that trigger relapses. When we do

this exercise in class, we often get answers like the following:

doing too much, poor sleep, financial problems, stressful

relationships, uncertainty about the future, food and chemical

allergies, sensory overload, time with people, family

responsibilities, travel, and other illnesses.

The third section, Goals, gives you a place to identify the areas you

intend to work on in the near future.

References

Arthritis Foundation. Your Personal Guide to Living Well with

Fibromyalgia. Marietta, Ga: Longstreet Press, 1997.

CFIDS/Fibromyalgia Self-Help website: See two-part article "Finding

Your Energy Envelope."

King, Caroline, Leonard , et al.. "Think Inside the Envelope,"

CFIDS Chronicle 10 (Fall, 1997) pages 10-14.

Collinge, . Recovering from Chronic Fatigue Syndrome. New

York: Perigree, 1993.

*Envelope Log available here:

http://www.cfidsselfhelp.org/envelope_log.pdf

© Bruce . All rights reserved. Reprinted with permission.

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