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The Invisible Dance of Chronic Fatigue and Cerebral Palsy

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Growing up with spastic cerebral palsy, I was unaware that I used more energy than others to do the simplest tasks. I didn’t know any different. To me, it was perfectly normal.

As with any child, I had an abundance of energy, and I took all of the challenges cerebral palsy brings, head on, and I fought with everything I had. Why? I was determined to gain as much physical ability as I could before I reached adulthood, and I succeeded. I remember the satisfaction I felt when I attained the milestones: walking independently, running, riding a two-wheeled bicycle (without training wheels), etc.

I graduated high School with honors and was accepted into nursing school. I was walking without any aids and, though my balance was tenuous, I felt relatively stable on my feet. That was 31 years ago. I failed to get my RN as chronic pain set in to both knees and I was forced to quit. Soon after the chronic pain began, so did the chronic fatigue. I felt like I was an unwilling participant in a new dance that never seems to end.

Since that time the effects of aging with cerebral palsy have taken their toll. I walk with a four-wheeled walker at all times, have zero free-standing balance left and use both manual and power wheelchairs to complete certain tasks and conserve energy. Yes, you heard me correctly. I have to conserve energy… I no longer have the abundance I had when I was younger. The pain and fatigue use up my energy reserves faster than anything else. The dance continues.

The level of pain and fatigue have continued to ramp up, meaning that I take an inordinate amount of time to do anything. This results in a fatigue so profound that I fall asleep in a nanosecond and it doesn’t matter where I am sitting: at the computer, in front of the TV, in my wheelchair reading a book or riding in the front seat of our car.

I manage to sleep, though some nights are restless and shallow. It doesn’t matter if I sleep well or not; the fatigue is with me the moment I open my eyes. Most mornings, it feels like I haven’t slept at all. The dance goes on throughout the night.

Conserving energy is complicated, so I envision that I have seven tablespoons of energy per day — a concept created by Christine MiserandinoOnce I run out of spoons, I run out of energy. I look at the tasks for each day and determine which ones I can accomplish without completely using up all my spoons. Some days I succeed and other days I fail miserably.

For example, if I want a shower, that will cost me two spoons worth of energy. Cleaning the kitchen and loading and running the dishwasher take two-and-a-half spoons of energy. Laundry takes from two to four of spoons of energy depending on the size of the load(s), how many loads there are to do and the number of garments that must be loaded and unloaded and/or hung up to dry, then folded.I am also an entrepreneur with my own business, so I also have much work that must be done on the computer, phone and iPad. I love the work, but it is very tiring.

The last few months, I have really been working on “proper spoon management.”  This means that I have been taking time to rest in the day (20 minutes max), I am aware of how many spoons I have left at all times and I hold onto that last spoon very tightly. This has been slightly beneficial, but I am still aware there is an invisible dance going on and I cannot bow out.

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Thinkstock image by Studio Grandouist.

Originally published: July 9, 2017
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