“Neuro-fatigue is one of the most debilitating consequences of a brain injury, as it influences everything the injured person does, both physically and mentally. A person’s emotions can also become raw when they are tired.”

Despite being hospitalized for months, I never heard the phrase “neuro-fatigue.” I didn’t know what it was, or that it existed until I was at home. This highlights just how shitty the after care is for stroke patients. How could no one tell me about this? How could I have no clue about the existence of this awful phenomenon? How can the care of brain injury patients be so bad, that it never includes a discussion about this likely side effect.

I went back to work sooner than I should have. My first shift back, I fell asleep at my desk, in the middle of the workday. Thankfully, I work at home and wasn’t missed. But, it took me by complete surprise. What was happening to me and why?

Neuro-fatigue, like everything else associated with MY brain injury, is invisible. No one can see the level of fatigue I have.

Things that trigger my neuro-fatigue include:

◦ Too little sleep

◦ Too much noise

◦ Too much chaos

◦ A grueling headache

◦ Having a disagreement or a serious discussion

◦ Unexpected changes to my day. The most recent example occurred when my work computer locked me out and I had to work with IT for over an hour to get my access back

◦ Expending mental energy, such as by studying, reading, or focusing on a difficult task

◦ Something that triggers my nervous system causing anxiety or prolonged periods of hyper-vigilance

When my neuro-fatigue is at its worst, I feel physically drained, exhausted, and also agitated. It usually is accompanied by my second most debilitating symptom: a headache.

It’s different from just being tired. It’s a weariness I can feel in my bones. My head is fuzzy and I get easily confused. Eventually, there is a point where I can no longer function and I have to be a slug that just takes up space. I feel worthless and like I’m a burden.

I wish I had a magic cure for this ailment. It seems the only thing that helps is rest and sleep. Meditation and mindfulness help a little bit, but they are mostly a bandaid until I can get a full night of sleep.

It’s so easy for someone to say, “well, then just go to bed early.” Or “just sleep more.”

They don’t understand that I have four kids under 8, and 3 of them have significant challenges of their own. They don’t understand I’m paying for an unexpected and necessary renovation to my dining room, and I can’t afford a sitter. They don’t understand that life doesn’t stop for my neuro-fatigue.

Sometimes it can take me a week to recover from an attack of neuo-fatigue. That’s a whole week of feeling and being worthless. It wears me down. I’m only 42, but I feel 72. It worsens my depression, and my self-worth hits an all-time low. Thoughts of “why did I have to survive this awful thing?” creep into my head.

I’m worried my employer will notice my productivity decreasing. So far, they haven’t. This is most likely because all the new people are just slower than me and not that I’m excelling in my work.

My family depends on my income to survive. My medical benefits are necessary for all of us. The weight of this responsibility is enough to crush my spirit on a good day.

I wish I had been more informed about the possible consequences of my brain injury. I wish there was more money dedicated to the treatment and rehabilitation of people with brain injuries. But, the reality is, if you can walk, talk, move, and work, you aren’t disabled “enough” to qualify for any disability or help. I’m in this situation, 5 years out from my stroke.

But it’s a fucking racket. I’m am absolutely disabled.

So I waste away, fighting headaches, fatigue and other figurative demons, knowing my best days are behind me.

This sad reality is peppered with moments of gratitude. I’m happy to be here for my kids. I just wish I was well enough to enjoy spending more time with them. I wish I could stay up late and watch movies with them. I wish their incessant fighting didn’t make my neuro-fatigue worse. I wish an afternoon of getting everyone bundled up to play in the snow didn’t zap my energy for a week.

I’m here, but I feel like a ghost. A shell of the person I used to be.

I miss the old me.