A sometimes overwhelming sense of fatigue is one of the most familiar symptoms of many chronic illnesses. It may be caused by any one or a combination of factors, such as muscle weakness, spasticity, medication, depression, infection, or rise in body temperature due to weather, exercise, or too hot bath out pool water, as is the case for me with MS. We might be too tired to perform the simplest of daily chores. All sorts of vicious cycles can exacerbate tiredness. Spasticity in my legs interrupts and shortens my sleep which of course leads to greater fatigue, and so on.
For some of us, this exhaustion might leave quickly. For others, it disappears once the immediate cause is removed, and unfortunately for some, it is ongoing, perhaps waxing or waning in degree. If there is no outward sign of illness, we might be told “you look so well” and unkindly perceived as lazy, neglectful, or non sociable
The “fatigue factor” accounts for a great deal of the frustration of people with chronic illness because others assume that if we look well or move without a cane or other aid, we are well. Even loved ones, as well as physicians or employers, have difficulty understanding the way in which fatigue can dim the light of attention.
I remember when I first used a cane. I had strength enough to walk from a handicap space into a store without much apparent effort. But by the time I came out of the store my difficulty was visibly evident. I recall exaggerating when I first left the car so people wouldn’t think I was misusing my placard.
In the early years of my illness, fatigue was listed as a sometime symptom of MS. Now it is recognized as its chief feature. I wake up in the morning filled with enthusiasm to do something later. But as the day wears on, my excitement has turned to a need to summon up reserves or change plans. Fortunately, for me, both family and friends understand our plans are conditional, subject to change or cancellation.
But, of course, I want to be active. I want to socialize. I don’t want to disappoint my wife or my friends. I want to be alert and present for clients. I want to be and do. What can be done?
First, and perhaps obviously, I have people in my life I want to be with, a few good friends and family. Secondly, I actively find things I want and can do. When I could no longer walk or ride a bike, I found a wheelchair bike. Bodhi obligated me to navigate our neighborhood. I started to paint. When I no longer had a studio, I wrote poetry. To warm up to write a third book, I began a mini memoir. To get over dry spells in the book writing, I sketch out blog pieces.
Most importantly, I amend Newton’s First Law of Motion that states (more or less): a body at rest will remain at rest unless an outside force acts on it, and a body in straight motion will remain so unless acted upon by an outside force from another direction. I replace outside force with inside force and that is my will.
Example: My mind seems wrapped in cotton and my body hung with weights. But as is true of so many aspects of our personality, I have masks to wear on different occasions. On the outside, I act as if, and appear to be brimming with energy. Often, reality comes to imitate the performance.
Example: I will use language consistent with my wish. I am not tired. I wish I had more energy. The genie in my subconscious says, “yes.”
Example: I am using a cane. We are attending a play, but parking is far away. I can barely support myself. I imagine a winch with a cord attached to the theatre and me. I keep the picture in my mind as the winch pulls me through the streets to our seats. I make it.
And so on. I harness my wish to my goal through my will. And I choose to use my will.