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Living Within Your Personal Energy Budget: Tips for Chronic Fatigue Syndrome & Fibromyalgia Patients: Part 1

  [ 26 votes ]   [ Discuss This Article ]
By Eunice Beck, RN • • July 24, 2002

Dear Friends,

When it comes to our financial health, some of us are able to work easily within a budget, while to others, the concept is like a four letter word. Unfortunately, I fit in the latter category. However, when applied to my health, I had to learn how to live within my energy levels. Because I found there was much to be said about learning to allocate energy expenditures, this article will be published in two parts.

About 12 years ago, I was diagnosed with CFIDS, and had to cut back on my work schedule. I was able to work part-time for several years. Then, my spouse had to retire, because of heart problems. Being left with few options, I returned to full time work. About two years ago, the world began to crumble when I was diagnosed with Fibromyalgia as well.

In many ways, my story is probably very similar to yours. I have fatigue, brain fog, pain and am frequently stricken by many of the other irritating symptoms. But my fatigue level definitely affects my other symptoms. The more exhausted I am, the more the other symptoms bother me. I don’t know if they are actually worse, or if I less able to tolerate them. I suspect it may be some of both.

Out of necessity, I have become creative with a way to manage my fatigue, and consequently, the other symptoms. I call it my energy budget. Like my financial budget, it is easy to get into trouble if I don’t pay attention.

When I was working part-time after my initial diagnosis, I was able to rest or sleep as much as I felt I needed. I controlled my work schedule, so what I had to learn was to say NO when called and asked to work. This was a difficult lesson for a nurse, but I did learn and have been able to use it in other areas of my life as well. In this manner, I was able to keep up with my energy needs, and to catch up on the energy requirements, if I had used from my savings, or put some on an energy “credit card.”

In the year prior to my spouse’s retirement, I was caring for my Mother who had terminal cancer. I was able to rest and sleep a lot, but also had the energy requirements caused by the stress of being with her 24/7 while she was dying. Stress is definitely an energy drain. Although I would not have traded that time with her for anything, I suspect the stress and anxiety left me with a substantial energy deficit. I did take 3 months off after she passed, but we were then living with my spouse’s parents, and trying to find a house to buy, so the stress level was still fairly high.

After the 3 months, I started working full time, in a recovery room setting. I had worked mostly ICU, but never in immediate post anesthesia recovery. There was much to learn. Once I finished my orientation period, I started the call schedule. I was on call 2 nights a week, and every third weekend. I did follow advice from one of the anesthesiologists “eat when you can, sleep when you can”. I’m sure this helped keep me going, because I napped in the evening when I was on call, and as much as possible when I was on for the weekend. There were times when I felt as if I could not continue, but I did. All this time, I was building up my energy debt.

After about 2 and a half years of this type of schedule, I developed yet another case of bronchitis(one of my most frequent “maladies” before my CFIDS diagnosis). I was off work for almost 6 weeks, trying to recover from the cough. As an aftermath, we discovered that I also have asthma. What I think was happening was my body telling me that the energy debt (my credit card) was near its limit. I also began to have other symptoms. A few months later I had a low back injury at work. Knowing that I would not be able to keep up the pace much longer, I began looking for an alternative position. I also looked for one in a cooler climate. Where we were living was very warm in the summer, and my heat tolerance was diminishing.

I found what I thought was my dream job a few months later. It required us to relocate. Fortunately it was to a beautiful coastal climate. I became the nurse in a new pain management clinic. I was excited. We moved and left our house on the market. I loved the job as I thought I would. Initially, it was a time of learning, but not terribly physically active. I enjoyed the patients and the doctor, and felt that my energy levels were adequate. After about a year we bought a house and the month or so after we moved was terrible. I was exhausted, and having pain in places I didn’t have pain before. I must have been pushing the credit limit again.

Over the next two years, there were many changes. Shortly after we moved into our home, I was in an auto accident (not my fault, thank goodness). I was not aware of being injured but was shaken up pretty badly. In addition, my car was totaled. We had to buy another car, so we now had a car payment in addition to a new house payment. Additional financial stress which I didn’t need. Then the hospital in which our clinic was located announced it was closing. Fortunately, the practice was picked up by the other hospital in town, and I continued as an employee for them, but had to take a pay cut.

The stresses of having to work out problems to meet the clinic’s needs with a new organization were terrible. We just had things running smoothly with the previous hospital, before the change came. Each new boss, and there were several, wanted things done a different way. I had the job of trying to meet the boss’ requirements, and what the doctor expected of me. I was building a major stress load. We were getting busier every week as well. I slept a lot in the evenings and on the weekends, but still had energy for nothing but work.

Then came April of 2000. My spouse failed a treadmill and another cardiac screening test, so it was decided that heart surgery was necessary. We chose to go to a larger town to have this done. I was in a motel while my spouse was hospitalized. I took family leave to be with my partner and to provide care at home. There were frequent trips back to the doctor in a town about an hour away. Initially, I was to be off for 3 weeks, but I had to request a fourth week in order for me to recover slightly. It had been a rough and difficult time for me, with minimal family support, and no real friends in the town where the surgery was done. We really had few friends even where we lived, because I had NO energy to put into social activities. I was lucky to read my email and rarely had energy to answer it.

I went back to work, and the first few weeks were so exhausting I didn’t think I would be able to continue. I staggered through the days, not knowing if I would be able to complete the necessary tasks. I had increased pain, IBS symptoms, headaches, severe fatigue and increased anxiety. I didn’t feel safe taking pain medication at work, and I know my performance level decreased significantly.

The doctor and my bosses became increasingly impatient with me. I became angry and frustrated, not feeling safe to tell them what was really going on with my health. Things did level out somewhat, but my stress level remained high and my performance below what was needed or expected. My performance evaluation during that period was much less positive than those I had received previously. This added stress and insult to my personal and professional confidence. I was definitely using a lot of energy on my energy credit card. The threat of energy bankruptcy was on the near horizon.

Part two on this subject will be appearing soon, so please look for it. Take care and be well.

Yours in Health,



I welcome your comments and questions at: My
articles and email responses are not being offered as those of a health care
provider. The information and opinions included are intended to give you
some information about your disease. It is very important that you empower
yourself with knowledge and participate in your own search for care. Any
advice given is not intended to take the place of advice of your physician
or mental health care provider. Always follow your physician's advice, even
if contradicted by something written here. You and your physician know your
situation far better than I do. Thank you and be well.

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