Part of the process of learning to live with CFS and Fibromyalgia is that we have to realize that for every physical or mental action we engage in, there can be extreme consequences due to the post-exertional malaise. Learning how to balance having a happy activity level without completely running our bodies down takes years for many to learn.
Often we will try to fight against or ignore the fact that we have limits. But our bodies always remind us in one way or another that we can’t do what we always considered “normal” or what we once could.
Bruce Campbell, PhD, and creator of the CFIDS & Fibromyalgia Self-Help Course, has what he calls the “energy envelope” that suggests to CFS & Fibromyalgia patients how to honor their limits, have control and improve their overall quality of life.
The Energy Envelope
Bruce suggests that in order to use the energy envelope idea, think of your situation as having three elements:
- Available Energy – This is the energy that we have to accomplish things that is limited but refreshed by rest, sleep and food.
- Expended Energy – This is the energy you lose through physical, mental and emotional exertion.
- Symptoms– Pain, fatigue, brain fog, post-exertional malaise, etc.
If you are expending more energy than what you have available (aren’t we all guilty of that?), your symptoms will increase and you are thenliving outside of your energy envelope.
The goal is to get CFS & Fibromyalgia patients to live inside of their energy envelopes and to learn how to gauge behaviors in order to do so. According to Bruce Campbell:
“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.”
How Do I Find My Limits?
You can rate yourself using the CFS/Fibromyalgia Rating Scale. Here is an example of what the rating scale looks like:
100 Fully recovered. Normal activity level with no symptoms.90 Normal activity level with mild symptoms at times.80 Near normal activity level with some symptoms.
60 Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms.
50 Able to do about 4-5 hours a day of work or similar activity at home. Daily rests required. Symptoms mostly moderate.
40 Able to leave house every day. Moderate symptoms on average. Able to do about 3-4 hours a day of work or activity like housework, shopping, using computer.
30 Able to leave house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work at home or activity like housework, shopping, using computer.
20 Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day.
10 Mostly bedridden. Severe symptoms.
0 Bedridden constantly. Unable to care for self.
Bruce Campbell says that he finds that most patients rate themselves between 25 – 45 at the start of the course.
Each Person Has Unique Situations
Everyone who has CFS, Fibromyalgia or both has unique situations that affect their illness or illnesses. No two people will suffer the same way and Bruce notes three factors that can affect your limits and the illness itself:
- Illness or illnesses. Your limits will be affected by whether you just have CFS, just have FM, or if you have both, and other illnesses also. Many people with CFS & FM have overlapping conditions and related illnesses that limits them even further.
- Life circumstances. Age, financial situation, family support – all of these things determine how your illness is affected. For those patients on disability their illnesses may not be affected as much as those who still have to go out and work because they can’t get benefits. Some patients may also have a spouse who can pick up the financial slack where others are in desperate need of income and can’t quit work even though they are really too sick to do so.
- Coping skills. How you choose to accept and live with your illness, cope and fight can make a big difference in how your limits are affected. Coping skills is a learned behavior, so there are ways to teach others how to live better.