By JoAnne Silver Jones
I’m an expert on fatigue. Living with TBI for 12 years, I know fatigues ebbs and flows, what mitigates and what exacerbates its intensity. I have an intimate understanding of the terrain of my fatigue and the ways in which tiredness reveals itself during the course of a day.
Discussing and describing fatigue is made more difficult because of inadequate language. I’ve come to realize a nuanced, temporally-focused, and explanatory vocabulary is needed to portray, to myself and others, the daily experience of being incessantly tired. Language is needed 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. In the vast Traumatic Brain Injury community, fatigue is the most common lament.
While I don’t have a new vocabulary, I can offer my view of how I unpack living with weariness that has compromised my quality of life.
Morning: Grinding fatigue.
I am retired. The alarm clock, with snooze buttons, is both a cultural relic and no longer a necessity. Typically, I get seven-plus hours of sleep each night. When I wake up, I feel as if a weight is pressing me. It’s not the same as wishing for 15 more minutes’ sleep after the alarm goes off, or the desire to luxuriate in bed as a way to start the day. It’s more like 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 lie still, hoping the heaviness will lift. When it does, it feels as if a window shade has opened.
When 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 it’s OK to stay in bed. With all of the knowledge I’ve gained about TBI over the years, I still feel the need to apologize for lingering in bed. I’m not sure who I’m apologizing to. Maybe an inner critic who applauds a get-up-and-go attitude, or maybe a cultural critic who sees staying in bed as lazy and unproductive, or maybe voices surprised I still feel fatigue so many years after my “accident,” or those who have forgotten entirely that I have TBI, and see fatigue as a sign of illness or lethargy.
Mid-morning: Groggy, need coffee
When I do get up, the first thing I do is make coffee and take medication to help me be alert. Over time, I learned the importance of starting the day with a routine. Once up and coffee made, I read the newspaper, organize and write down my plans for the day, and, typically, put those plans in sequence of most essential to the least to do. I limit the list to three or four items, such as 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 exercise 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 inspiration. During these hours, I can digest and analyze ideas, focus on content, and articulate my thoughts. Typically, words flow easily and I can remain engrossed in whatever I’m doing.
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, just a hint of grey appeared on the horizon, and then gusts of wind arrived to blow damp air and obscure the blue sky. I think of the San Francisco fog when, in the late afternoon, a mental fog descends on me. My eyelids begin to feel heavy, and it takes exertion to keep them open. At this point, all I want to do is lie down and close my eyes. I don’t want to talk, hear noise, or focus on anything.
Now, I build an afternoon rest into my daily schedule. Even if I don’t fall asleep, closing my eyes, lying still, and surrounding myself with silence all help to loosen the cloak of fog, and make space for the evening.
Early evening: Limited energy
After a rest, the fog-wrap lifts and I have energy, though limited, for the remainder of the day. It is the time of day when my cognitive capacity is noticeably compromised. 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. I find myself in the uncomfortable position of saying no to invitations, or wanting to leave a social event earlier than others. I’m still the tired one. Early evening is a time of day when I can do things like cook, clean, or watch TV.
Evening: Full circle to grinding fatigue
Late evening for me is about 9 or 10 pm. I used to be a “night owl.” I liked to stay up late reading, working, or 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.
I took years to acknowledge and accept that fatigue is part of my brain injury. Complaining won’t make it go away. Perhaps the most important step has been accepting and recognizing I need to live as harmoniously as possible with this reality.
Some lessons I’ve learned 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 truth.
Stop apologizing and explaining: Daily tiredness is part of my chronic medical condition. I don’t need to apologize any more for the sequelae of TBI more than a diabetic has to apologize for taking insulin and eating on a regular timetable.
Mitigating to reduce stressors: While fatigue is a product of TBI, I can do things to moderate the resulting limitations and consequences. I can adjust my days in accordance with my own rhythms of weariness. I can exercise some control over the degree to which my life is upended.
Finding band width: About seven years into living with TBI, my doctor told me, “Find your band-width,” meaning the range in which I felt most relaxed and least stressed. Finding my band-width meant letting go of things that appropriated my energy and things that absorbed my focus and imposed non-stop, anxious, thought loops. One significant step I took was to reduce the size of my living space. I moved from a four-bedroom house to an apartment. I no longer had to deal with snow, lawns, repairs, or replacing a roof or appliance. For me, this change significantly reduced the stress in my life and the running commentaries in my head.
Building a scaffold: I identified basic components of the day that provided me with structure and calm, including coffee, naps, exercise, writing, less time on social media, and reducing news intake.
C PAP: I had resisted the idea of using a CPAP machine. My concerns were all connected to self-consciousness. Two years ago, I finally started to use one. My doctor said even a 1% increase in sleep would make a significant difference in my brain health. I almost immediately noticed a change in the quality of my sleep and an increase in cognitive focus.
Medication: I have taken medication consistently over the past 12 years. I take medication to reduce anxiety and depression, to deal with pain, to control seizures, and to help me be more alert. I am so grateful for the quality of life pharmaceuticals afford me.
Meditation: Four years ago, I took a course called 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 conversations or events that had happened or might happen. I also noticed more often that, when my mind started to wander, I was more able to interrupt and pull myself back into the moment. This skill, which I am always trying to maintain and improve, helps reduce stress and bring a sense of calm.
Dealing with fatigue remains a daily battle. As with any effort to improve health, I need to remain vigilant to do what helps and be careful to avoid behaviors and practices that exacerbate the ever-present TBI fatigue. I am learning to build a satisfying, joy-filled life, with limitations, but also with bountiful hope.
JoAnne was a college professor, and is now a TBI survivor and author.