Dr. JoAnne Silver Jones Ed. D, MSW
Fatigue. My nemesis. My constant companion. The reminder that my brain is injured, some parts irreparably. Fatigue wakes up with me and follows me to sleep. It’s so hard to explain how after 8 hours of sleep, a CPAP machine, medication, and meditation, I can wake up tired.
A 2015 study published in The Journal of Head Trauma Rehabilitation, begins, “Fatigue is one of the most frequent sequelae of traumatic brain injury (TBI), although its causes are poorly understood.” (Bushnik, Tamara, Caplan, Bogner, et al, July 1, 2015) This study investigated the interrelationships between “Fatigue and sleepiness, vigilance, performance, depression and anxiety.” The findings supported their hypotheses that, “Fatigue after TBI is a cause, not a consequence, of anxiety, depression, and daytime sleepiness, which, in turn (especially depression), may exacerbate fatigue by affecting cognitive functioning”. The researchers recommend addressing anxiety, depression, and vigilance to alleviate fatigue.
After living with TBI for almost 14 years, I find these results interesting, but not novel.
The recommendations from the study add to my sense that living with traumatic brain injury is like living on a Mobius strip: hard to get oriented and balanced, or see a clear path forward. Fatigue leads to anxiety, vigilance, and depression. In order to deal with fatigue, it’s necessary to address the ways in which anxiety, vigilance, and depression appear in one’s life. One causes the other, and dealing with fatigue requires addressing the consequences of fatigue.
How fatigue shows up in daily life
I too often wake up tired. I check my CPAP machine to see how many hours I was attached to it, believing the number will give me an indication of how rested I’ll be. It doesn’t, but I keep looking. I take my medication: one for helping me with sleepiness, and others I know contribute to my fatigue, but are necessary for pain, seizures, and depression.
The feeling when I wake up is like having a heavily weighted blanket over my entire body and a weighted eye covering. It’s hard to move. Sometimes I fall back asleep. I tell myself to get up, make coffee, go for a walk, or practice yoga and meditation. The blanket slowly eases up and then I get up. I don’t bound up, although I wish I did.
I have lists of things to get done every day, from the mundane get-prescriptions-at-the-pharmacy, to the engaging and creative, like working on the novel I’m writing. My lists are long and many items reappear day to day. If I don’t see something written down, I’m likely to forget to do it, and the fact of forgetting itself causes anxiety adding to my fatigue.
Some days I go grocery shopping. Of course, I have a list, but when I get into the store, all of the items and aisles and people and signs about “mask, don’t mask” can overwhelm me. I often forget to look at my list until I’m ready to leave and then have to find the energy to go back through the store and get what I came for. I find myself buying what appeals at the moment. I take time to look at the shelves, causing other shoppers to grimace as I interfere with the speed of their shopping carts. By the time I check out, my tinnitus is louder and my attention is fragmented because I’m overwhelmed by the anxiety of navigating the shopping aisles and embarrassment that this ordinary chore became so harrowing. By the time I get home, I am really tired and typically take a nap.
Some days I meet friends for a hike or for lunch. Since seating at restaurants in the Covid era is mostly outside, I don’t have to deal with overhead lights and piped in loud music. Although, the cadence, tone, or style of how some people talk can be taxing. There are those who talk without taking a breath, or offer a long explanation of something unfamiliar to me, so I have to concentrate to follow the thread of the conversation. Conversations can exhaust me, and I feel the weighted blanket begin to enfold me. All I want to do is go home and take a nap.
Forming a relationship with fatigue
I spent a significant part of the past 14 years fighting and arguing with fatigue.
“You won’t interfere with my life, fatigue!”
“I’m sorry I’m so tired. Please go away. Don’t remind me of my injuries and how I got them.”
As with so much in life, solutions aren’t found in denial or hostility, but in some form of acceptance and accommodation. Addressing fatigue remains the hardest, daily, ever-present symptom of my Traumatic Brain Injury.
I have, though, learned to:
Acknowledge the reality that fatigue IS the legacy of TBI
As I’m able to come to terms with fatigue as part of the Mobius strip housing my life, the more I can lessen my anxiety and vigilance. Fighting a truth takes so much energy, and I don’t have energy reserves. I frequently tell others I’m tired and, if necessary, that my fatigue is part of the TBI. Just saying what is real helps bring what is invisible to the surface and further reduces my anxiety and self-consciousness about a performance, which can be simply engaging in a conversation.
My wife now does the preponderance of grocery shopping, alleviating my anticipatory worry about managing a trip to the supermarket. I could also purchase groceries online or go without products I think I need.
I do the bulk of other shopping on-line, preferring to shop at local stores with fewer aisles and fewer people when possible. I choose, though, not to go from store to store looking for an item.
I am becoming more astute about how to simplify ordinary activities.
I try to give myself guilt-free permission to let things not get done. I’m retired. I worked for 40 years and I have a severe brain injury. I can stay in bed for as long as I want.
At 75, I don’t need to have my days guided by a list. In truth, I could have stopped keeping lists years ago, but now is better than later. If I forget to do something, the world will be ok, my family will be fine, my friends will remain friends.
I trust scientific studies will continue to try and find ways to alleviate – or address more adequately – the fatigue accompanying Chronic Traumatic Brain Injury. Many of the studies I’ve looked at use the language “subjective fatigue”, I assume to distinguish it from a symptom that can be measured, like blood pressure. The notion of subjectivity can be confounding, as it seems to question the legitimacy of the experience of fatigue. Subjective. Idiosyncratic, Individual.
The ways in which we each experience fatigue is no doubt individual; not everyone will feel the same heavy blanket I do. But in between bouts of heaviness and wishing it wasn’t so, we each need to absorb, address, and hopefully come to peace with the reality that fatigue is an integral consequence of TBI.
JoAnne was a college professor, and is now a TBI survivor and author.
