Taxonomy of fatigue through the lens of Traumatic Brain Injury
“No. I’m too tired.”
“Aw. We’re all get tired when we get older. Come on. It’ll be fun.”
Now I need to decide. Do I do my spiel about fatigue and traumatic brain injury? Do I simply say, maybe another time? Or do I acknowledge that I am an expert on the experience of tiredness and fatigue; that I know the texture of tired; its ebbs and flows; l know what mitigates and what exacerbates its intensity? After 11 years of living with TBI, tired and I have an intimate relationship.
Any response I make, is limited by the absence of adequate, commonly understood vocabulary, that describes the rhythms and nuances of certain kinds of fatigue. In the absence of other tools, I’ve developed my own taxonomy of fatigue, where I depict the landscape of my experience, and the ways in which incessant tiredness reveals itself in the course of a day. I’ve tried to capture the feeling of being wrapped by a casing that never comes off, sometimes weighty, sometimes light, its heft fluctuating daily, like the tides.
I don’t presume to know the particular experiences of fatigue in the vast TBI community. What I offer here is my own taxonomy, how I name my weariness as it shimmies though time.
The shroud of TBI fatigue does not only touch me. My family has had to learn about its intrusions into their lives as well. “Grandma’s tired” “I can’t talk to you now. I need to nap”; “No, we won’t be able to come to dinner”; “I’m so sorry I missed your game”; “I didn’t call because I was so tired” “I’m sorry…….”. Tired. I’m so sorry that I’m so tired.”
A temporal taxonomy
Morning: Grinding fatigue.
I am retired and the alarm clock, with snooze buttons, is both a cultural relic and no longer necessary. Typically, I get 7+ hours of sleep each night and wake up to the sound of my dog asking for his breakfast. Like the mother of a small child, when I hear him, I leap up, feed him, and let him outside. Once he is taken care of, I get back into bed with a familiar sensation, as if a weight is pressing down on me. It’s not the same as wishing for 15 more minutes in bed after the alarm goes off, or the desire to luxuriate in bed as a way to start the day. It’s more like the heft of the lead apron used in a dentist’s office. My eyes open and close, as if it’s very late and I’m trying to stay awake. Sometimes, I do fall back asleep. Sometimes, I just lay still, hoping the heaviness will lift. When it finally does, in 15 minutes or an hour, it like a window shade has been pulled up. The quality of light changes, along with my ability to focus and move.
Whenever I am actually awake, I might complain to my wife, Debby, that I feel as if I haven’t slept at all. She is always non-judgmental and tells me that it’s ok to stay in bed. With allof the knowledge I’ve gained about traumatic brain injury over the years, I am still inclined to apologize for not getting up sooner and for being tired. I’m not sure who I’m apologizing to. Maybe an inner critic that applauds a get-up-and-go attitude; maybe a cultural critic that sees staying in bed as lazy and unproductive, or maybe voices I’ve heard over the years that are surprised that I still feel fatigue so many years after my “accident”, or who have forgotten entirely that I have TBI, and see fatigue as a sign of illness or lethargy.
Mid-morning: Groggy, need coffee
Once up, the first thing I do is make coffee. I take medication to help me wake up, and coupled with coffee, I am alert and focused.
Over time, I’ve learned the importance of starting the day with a routine. The familiarity of a daily pattern helps me to settle and concentrate. Once up and coffee made, I read the newspaper, organize and write down my plans for the day and, typically, put those plans in a sequence of the most essential, to the least. I used to have a long list which could not be completed in a day, regardless of TBI. Now, I limit the list to 3 or 4 items, that can include such items as: “nap,” “read”, or “walk on the beach”. Then I’m ready.
Late morning to early afternoon: Most energy; Most cognitive focus
This is the time of day that most approximates what I imagine I was like pre-TBI. This is when I take a yoga class, go to an exercise class or work out on my own. It’s when I plan visits with friends or do necessary errands. It is also when I can do my most intensive cognitive work. I write or review the work I’ve written. I read for pleasure and for writing inspiration. During these hours, I can digest and analyze ideas, focus on content, and articulate my thoughts. Typically, words come easily and I can remain engrossed in whatever I’m pursuing.
Mid to late afternoon:The veil of fatigue
I grew up in San Francisco. Every afternoon, between 3 and 4 pm, the fog rolled in. At first, there’s just a hint of grey on the horizon, and then gusts of wind arrive, blowing damp air and obscuring the blue sky. Similarly, by late afternoon, I’m covered by a mental fog. Once it starts, my eyelids begin to feel heavy, and it takes exertion to keep them open. At this point, all I want to do is lay down and close my weighty eyes. I don’t want to talk, hear noise or focus on anything. Movement of any kind, going into a store, walking across the street, mailing a letter or making a phone call, all seem too burdensome.
Currently, I build an afternoon rest into my daily schedule. Even if I don’t fall asleep, closing my eyes, laying still and surrounded by silence, all help to loosen the cloak and make space for the evening.
Early evening: limited energy,
After a rest, the fog lifts, and I have stamina, though more limited, for the remainder of the day. It is the time of day when my cognitive capacity is noticeably compromised (at least to me) from the severe injury to my frontal lobe. I may mispronounce a word or say one word when I mean another (green for yellow; tomorrow for yesterday); I forget small things or larger things, like a time commitment. My thinking is more concrete, nuances in a conversation escape and my sense of humor is dulled. This is not the best time for social engagements, though it is the most conventional time. At times, it is uncomfortable to decline an invitation, or to want to leave a social event earlier than others. It is also a time of day when I can do things like cook, clean, edit, watch TV or play games on my telephone.
Evening: Full circle to grinding fatigue
Late evening for me in now about 9 or 10 pm. I used to be a “night owl”. I liked to stay up late, reading, working, watching a movie. It’s now the time when I again experience what I call grinding fatigue. By the end of my day, the grinding fatigue has returned. I find the energy to get into bed. Sleep finds me quickly.
It has taken me years to acknowledge and accept that fatigue is part of my brain injury. Bemoaning its presence won’t make it go away. Perhaps the most important step has been accepting and recognizing that I need to live as harmoniously as possible with fatigue.
I have learned some important lessons about how to live in concert with my fatigue.
Acknowledging and naming: TBI and fatigue are part of my life. Wishing it weren’t so does not change the truth or the impact, and resisting this fact only adds stress to an already stressful reality.
Stop apologizing and explaining: Daily tiredness is part of my chronic medical condition. There is no more need to apologize for the sequelae of TBI than there is to apologize for taking insulin or needing a hearing aid.
Finding bandwidth: About 7 years into living with TBI, my doctor told me, “Find your bandwidth”, meaning the range in which I felt most relaxed and least stressed. Finding my bandwidth meant letting go of things that sapped my energy, and things that absorbed my focus with non-stop, anxious, thought loops. I reduced the size of my living space, to have less maintenance and things to deal with; I became more adept at stating my needs and I worked to reduce the mind loops and second-guessing; I reduced my social media and news intake and planned time to exercise and to rest.
CPAP (breathing machine): For several years I resisted the idea of using a CPAP machine. My concerns were all connected to self-consciousness. Two years ago, I finally started to use a CPAP. My doctor said that even a 1% increase in sleep would make a significant difference in my brain health. I attribute having increased focus and energy to the regular use of the CPAP machine.
Medication:Since suffering a traumatic brain injury, I have taken medication daily to: to reduce anxiety and depression; deal with pain and to help me be more alert, and to control seizures. I am grateful for the quality of life afforded by these pharmaceuticals.
Meditation: Four years ago, I took a course in Mindful Meditation for Stress Reduction. After several weeks in this course, I noticed a distinct decline in the frequency of mind-loops, the incessant going over of conversations or events that had happened or might happen. I also noticed, that when my mind started to wander, I was more able to interrupt a thought and pull myself back into the moment. This skill, which I am always trying to maintain and improve, helps significantly to reduce stress and bring calm.
I had no control over the event that led to my traumatic brain injury. I have learned, and am learning, how I can have greater power over the physical and psychological aftermath.
I have found strategies to cope with fatigue. Coping, though, doesn’t mean freedom from feeling angry and depressed by being so tired. It is, though, a more amicable relationship now. Strategies aren’t miracles. Stories, like mine, that end in strategies can imply that there is a clear, direct and stable path out of the morass. My journey is more of a meander through a maze. Yet, I have experienced progress, and have learned that I can influence the course of my days, and therefore the progression of my life.