Living with Neurofatigue After Brain Injury

Here we find ourselves beginning a new year again. Time seems to be moving forward at an accelerated rate and quite unexpectedly, another anniversary is here. Tomorrow marks the ninth anniversary of a social community I founded back in 2013.

At the time, I saw the need for brain injury survivors to connect with each other, to share their experiences, and to come together in support of each other. Fast forward to today, and the Brain Injury Hope Network has almost 35,000 members from more than 60 countries. Daily, I post content that resonates with me as a brain injury survivor. Time has shown that if the content resonates with me, it will most likely touch the lives of others in the community as well.

This past week, as I was browsing my content library for something to post on the network, a graphic I crafted many years ago caught my eye. “The Holidays Are Over. If I’m Lucky, I’ll Be Recovered by February!” 

When I designed that graphic, those words served as a sort of maxim in my life. One of the unexpected outcomes of my brain injury was that my life was defined, at least in part, by struggles with neurofatigue. Virtually anything that taxed me mentally would trigger horrific bouts of neurofatigue. For those unfamiliar with neurofatigue, it is a weariness unlike anything I ever experienced in my pre-injury life. So, for people who experience neurofatigue on top of exhaustion from the holidays, February seems like a reasonable time destination to emerge from that fog of mental depletion.

Tongue-and-cheek graphics aside, neurofatigue is more complicated than just being overwhelmingly tired. With neurofatigue comes a full suite of bonus add-ons, at least for me. I can expect very slow processing time. Cranial pressure, akin to blowing up a balloon inside my skull, also rears its ugly head. Let’s not forget a big helping of aphasia and a side dish of sluggishness. All in all, it sucks, but it comes part and parcel with living a life with brain injury.

Early on after my brain injury, the holidays would set me back for weeks at a time. I was simply unable to get my feet back under me. But the years continued to pass, and I continued to heal. Sometimes I was able to see and feel my own growth, other times growth happened in the background, without my noticing.

This past holiday season was my twelfth as a brain injury survivor, and perhaps my easiest. But I've come to understand that I pay a price to live like I once did, pre-injury. While I am cautious about preserving my mental resources most of the time, Christmas is not one of those times. I don’t monitor myself during the holidays, nor hold myself back. Instead, I live my best life, enjoying the holiday festivities as much as possible, even with the knowledge that I'll likely pay a price later.

And like every year, I have recovered from the holidays. I always do, but this year was different. I only needed a couple of days to bounce back … which is astounding! Knowing how I have felt after the holidays in previous years, I took advantage of the fact that this year, the day after Christmas was a Sunday. So, I did a whole lot of nothing; I took a recuperation day in the truest sense. 

The magnificent reality is that recovery, which was measured in weeks a decade ago, now only takes a few days. Had I not read the reminder that “I’ll Be Recovered by February,” I most likely would not have noticed my own growth. 

Moving forward into 2022, I’ll continue to do what I’ve learned over the years. I’ll honor and respect the limitations that define at least part of my life, and I’ll continue to use my own life experiences to help others who share my fate. Seen in this light, my struggles are one of my greatest gifts I can share with others. Here’s to a new year full of peace, good health … and awareness that you are not in this alone.