In my last article, I started a discussion about learning to keep your energy budget in balance. It is many times like being a tight rope walker, with unexpected things threatening to send you crashing.
Just when I thought I might be starting to get things a bit more settled, my spouse got really sick. We went to the ER on a Wednesday night, to a diagnosis of bacterial pneumonia. I called in sick on Thursday, and said I would work on Friday. Right after I made that commitment, I learned that my partner was to have a very invasive procedure the next day, and had become extremely frightened. I tried to get off on Friday, but couldn’t. I finally made arrangements to leave in the middle of the day to go and be with my spouse for the procedure. Stress, anger, fear, anxiety, were all at peak levels. My energy requirements were over the top. The credit card was maxed out!
I spent much of the weekend at the hospital (the same hospital I worked for), but tried to get some rest. This happened on a holiday weekend. Even with three days, I knew I could not manage work on Tuesday. Instead, I called my doctor, and got an appointment that day. After hearing what was happening and how I was feeling, physically and emotionally, he put me on disability for a few weeks. We hoped that when the crisis was over, I would be able to return to work, at least part time. In fact, when I talked to my supervisor about my disability leave, we discussed that possibility.
Unfortunately, instead of getting better, my partner got worse, ending up with the bacterial infection reaching the recent chest wound from the heart surgery. So, off we went, to be cared for by the same surgeon, in the hospital where the heart surgery had been performed. I followed the ambulance in our car, and found a place to stay after admission. The first night was spent in ICU, with surgery the next day. During all this time, in both hospitals, my spouse was in a lot of pain and was very disoriented due to the illness and the temperature. Again, I was stressed to the max, physically and emotionally.
We came home about a week later with nursing required, from me and from a visiting nurse, to care for the wound until it was time for additional surgery. We had a hospital bed in the guest bedroom, and as much as I tried to rest, I was the 24 hour nurse, if I was needed, as well as shopper and cook. And all the time my spouse was in the hospital, for both surgeries, I spent in a motel, because I knew I would not be safe driving the 70 miles back and forth to home. After the second surgery, my spouse started to get better. Unfortunately, I did not.
Almost two years later, I am still off work, and expect that I will remain so. I have been granted hospital benefit long term disability and Social Security Disability.
Although I am not working, my energy debt was so elevated, that my fatigue level remains high. It has been necessary to learn to administer my energy budget even more carefully. I think I learned how to do this at some level when I was initially diagnosed, and worked part time. Then, my life intervened, and I had much less control. In fact, I think I forgot that an energy budget was necessary, and just went on with my life as if I had unlimited stamina.
Finally, my body forced the issue. It said “no more credit.” You must stop pushing yourself and rest/sleep more. Now that I am at home, I frequently sleep for 12 hours a night, of course interrupted by bathroom breaks and some wakeful periods. In spite of prescription medication and Melatonin, I have difficulty falling asleep. I still have night sweats at times. I am frequently awakened by pain. I try to plan my life for no more that small expenditures of energy each day. Almost anywhere we go together, my spouse does the driving, where I was always the driver before. When shopping is necessary, we go together, if I go at all. I will not drive anywhere outside of our small town by myself.
When I know I have an activity which will involve a large energy drain, I do as little as possible for several days before. I know I will be exhausted for several days afterward. I simply have to plan my life and activities around my energy/fatigue level. When I do that, I am able to participate in some social activities. I am writing, even trying to write a book. I am reading voraciously(although I frequently remember little about the story later). Things I was interested in doing before, but had no energy to invest at the time.
For a while I was spending some of my energy budget to going to physical therapy. I went for therapy and then walking in the heated pool. It was taking a substantial amount of energy investment, but I did get some payback, in the form of strength and a somewhat decreased pain level. Less pain means more energy. However I reached a point where increased fatigue outweighed the gains so I stopped going to therapy. I will probably return at some point in the future.
Perhaps, most importantly, I have been working very hard to deal with my stress/anxiety level. I was seeing a counselor before I left work, and have continued to do so. I worked hard at decreasing my apprehension level over the disability payment issues. I’m trying to invest my energy in other things. Energy spent worrying about things that are out of your control is wasted energy. I don’t know about you, but I don’t have any to waste.
Learning that you need to budget your energy is an important lesson for anyone with a chronic illness. Being able to recognize when you are using your energy credit card is essential. Sometimes life demands that we borrow from this credit card, but we must realize that eventually the credit will max out so we must control its usage as much as possible. If you get into too much financial debt, the courts do allow you a way to handle the situation, by repayment organization, or bankruptcy. Your body does not follow this law. It will require you stop using energy credit when it reaches its limit. It will put you into energy bankruptcy. Learn to spend your energy well by taking control of your life and your energy budget Take care and be well.
Yours in Health,
I welcome your comments and questions at: firstname.lastname@example.org. 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.