Episode 10

I’m exhausted. Those two little words say so much and not nearly enough.

Fatigue is a major issue that a lot of brain trauma patients deal with. It isn’t the “normal” tired. It is a chronic and overwhelming exhaustion that is debilitating. One of the best analogies I’ve seen is a battery. Before the trauma, your battery could fully charge. Every night, you’d go to sleep and wake up in the morning with that battery charged for your day ahead. After the trauma, your battery no longer fully charges. It’s like a 3 year old cell phone that can only hold a 50% charge. On top of that, every activity takes more energy than before, so that battery depletes a lot quicker than it used to. That battery now runs out early in the day, unless you can recharge it. That makes doing anything a challenge. Simple things like focusing on a meeting at work will zap that battery and trigger something called neuro-fatigue. Although the battery example provides a great visual to people, my go-to is that it is a tiredness that goes deep into my bones.

Before my aneurysm, I worked in demanding and stressful jobs. I often worked extremely long hours and traveled a lot for work throughout my career. My weekends were spent either working or doing things around the house. I would spend an entire day cooking and by the time the day was done, I’d be tired, but it was manageable. It was a good tired. A tired that comes with the feeling of accomplishment. My husband and I would often go on hikes, camera gear packed, and spend a day out taking pictures and enjoying nature. Those days were tiring but my battery would always replenish.

After my rupture, I didn’t sleep. I was exhausted all the time. I told my doctors that I would only sleep for an hour at a time. They explained that fatigue was common and normal. But they also told me that I needed to sleep so that my brain could heal. They prescribed a variety of sleeping meds and one after another failed to work. I’d still only sleep for an hour at a time. The pills made me feel tired, but sleep never came. I became a zombie and continued to express concern. Eighteen months after my rupture, I went to a neurologist who specializes in sleep issues. After two sleep studies, they discovered that I cannot reach REM sleep anymore because of the damage from the rupture. My brain wasn’t healing because I could never get to a deep restorative sleep.

We finally found a treatment plan that gets me to REM sleep about 4 nights per week, so that took care of part of my exhaustion. The neuro-fatigue was still a challenge. Part of my recovery has been weekly appointments with a vestibular therapist, speech therapist, and occupational therapist. It became apparent that part of the issue was that I was still trying to live my life the same way I always had, rather than considering my new limitations. As I worked on my speech, balance, and vision issues, all three therapists had the same advice…slow down.

I struggled to understand the neuro-fatigue. I looked for causes, patterns. It never seemed to make sense. Things I did yesterday without issue, I couldn’t do today. Things as simple as baking a boxed cake mix would knock me down for 3 hours. Trying to read a book for longer than 15 minutes would trigger intense pain and wipe me out for the rest of the day. My therapists told me that I now had to break things up throughout the day. I could no longer spend the morning cleaning the house. Instead, I was told to work for 30-60 minutes at a time, depending on the task, then rest for an hour or two before starting something new. My nature is to “power through” and finish my work. It’s who I am…or was.

As a brain trauma survivor, my energy stores are depleted quickly because the brain is trying to do things on a different path. It’s like your commute to work being blocked by an accident so you take an alternate route. You aren’t familiar with that road, but you know it leads to your destination. Your brain is sucking up your energy trying to do things differently. My brain is trying to rebuild pathways that were destroyed by the rupture and the processing takes more energy and time now. When I push myself too hard, the recovery can take up to three days. I am functionally useless during this period. It starts with me slurring my speech, stumbling, and completely unable to form a coherent sentence. I will collapse into bed and sleep as much as possible. There is no cure besides rest.

Along with so many other things post-rupture, this was a new obstacle to navigate. The challenge was frustrating…it IS frustrating. I’m still learning to cope with this. It is honestly one of my constant struggles and the thing that sends me into the “why me” mode. I hate not being able to function like I used to. I hate not being able to go non-stop all day. I miss the me that used to not think about where I would be when I got tired.

The good news is, I’m learning to recognize the signs before it gets to the point of complete exhaustion. I started to notice that as my battery runs down, I become more irritable, I struggle to concentrate and focus, noise becomes more intense, and I feel “heavy.” It’s as if my blood turns to lead and my feet are encased in cement. I’ve become more in tune with my body. I now pay attention to all the cues my body shows me. At the first appearance of any of these signs, I stop what I’m doing and lie down. Well…most of the time. I still have my moments when I think I’m invincible and I keep pushing myself, but I’m learning.

Like everything on this journey, it makes me appreciate my blessings. I’m grateful to be alive to feel tired. But I’m definitely going to take a nap.