Living with Neurofatigue After Brain Injury

David Grant and his wife smiling in a restaurant with brick and wood paneled walls
David Grant (left) and his wife enjoy a night out

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. 

Comments (9)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

We are a newly married couple and I'm learning day by day what life is like for a brain aneurysm survivor. Brain aneurysms have only a 15% survival rate so coming out the other end walking and talking is both blessing and curse. Just wanted to let you know that your post gave great comfort to my wife in putting a name on it, "neurofatigue". You just made our day!

Thank you Paul. I wish you epic success as you move forward together. It's not an easy path, but great joy and a meaningful life can be found along the way. ❤

I'm eight years on and still improving. I found taking a three day weekend every other week means I can be mostly my best self at the office the days I'm in, but if I push through that extra day (which I use to rest), it takes a month or more to get back to where I was. (Yes, I shouldn't be prioritizing work over living, but salary and benefits are important.) Fortunately I have enough vacation time that I can do this.

Thank you for your post. I am with my 21 yo son who suffered a “mild” traumatic brain injury two years ago wrestling with his buddy. He was dropped on his head. He had (has) neuro cognitive issues which were stable until just recently after 6 months of two ICU stays for extreme low sodium and three hospitalizations for altered mental status, and one three month stay in neuro-rehab. All that, a year and a half ago.
He “relapsed” this new year’s eve, with a week of sleep deprivation compounded with life changes of moving out with his buddy. This story really hit home with me. I know stress but forgot that in him it would be magnified. I could list the triggers and stressors now. He is stabilized - as his mother, I am blessed and thankful I was around to help him through this. Not hospitalized yet but under a doctor’s care. I am back on it!!!

Wow you describe my husbands post brain injures suffering exactly. We are yr 20 of his recovery. Any physical and mental extra exertion results in extreme brain pressure and pain and exhaustion. Drs have treated him like they have never seen this nor have solutions. Thank you for letting us know he’snot alone. Hope we all find some kind of relief. Best wishes to you and your family that share this hard journey with.

Thank you. It remains my hope that others can better understand the subtle (and not so subtle) nuances that come with life after brain injury. I wish you and your husband well as you navigate life. Be well... and stay safe! ~David

Try going to the VA and explain that. They don't recognize any pain but acute. Chronic pain is not treated.

Thanks for your post. I can always relate in every way to what you say. I’m seven years into my recovery from head injury and it’s reassuring to know there is a chance of more healing even after so many years. Wishing you the best for 2022

My neurologist is very aware of this and prescribed me Adderall however there is an inherent risk of stroke however I am a younger mother and my quality of life is important so I opted in.