Fatigue After Brain Injury

It’s a sneaky little bastard

I remember the days of mowing the lawn or working extra hard and extra long for work, and what that would do to my mind or body. This periodic “extra effort” would require a nap, maybe a good night’s sleep, possibly a glass of wine or bottle of beer. Whatever the recovery method, I’d rebound quickly the next day or after resting or meditating.

These days, it’s quite different. It took a while to recognize, but then it became more clear. After the accident, I started experiencing abnormal fatigue — the draining of strength and/or energy.

I identified it once I saw the pattern of feeling drained after a few doctor appointments. Another early example was filling out paperwork. It would make me so tired. It felt so challenging filling out forms and communicating to doctors, trying to retain the info, keep notes, expressing my experiences to them, talking in the office under bright fluorescent lighting. I was so over it. It was so tiring, it would lead to feeling depressed. The conversations were repetitive, and while I was getting empathy and reassurance, no one seemed overly concerned about my mental state. My cognition was off. Everything took more effort. Filling out forms felt like taking the SAT exam. Afterward, I’d just want to sleep.

Each new doctor needed new forms, new explanations of why I was there, re-describing the body pain and mental stressors and confusion, the frickin’ fog that would not let up — each symptom making the other symptoms worse. The cycle seemed endless. The spiral made me feel helpless.

I eventually recognized that I was averaging two days of recovery for anything mentally or physically challenging. Totally more than I needed before. Mow the lawn = two days rest after that. Physical therapy three times a week = I was screwed all week because I had no recouped time. It felt like an unmanageable boat anchor was weighing me down. I recognized the abnormality and added fatigue to the list and started researching it.

Fatigue examples were all over the brain injury support groups. Some were identical to mine. The feelings of confusion and frustration were all shared by the group members. They would ask, “Why do I need to rest for days after doing ‘this or that?’” “This is ridiculous” they’d say.

Finding people online that were experiencing similar symptoms and sharing their stories was one of the most valuable bits of information I received to help reduce my own stress, anxiety, and depression over how I was feeling and what I was experiencing. It relieved me that I wasn’t alone and that I (probably) wasn’t crazy. It helped me hone in on what was happening so I could plan improvements for recovery.

If I could identify the triggers of the fatigue, I could make a schedule around it, as well as creating a plan for negating it over time. I already had the skill set and discipline to do all of that without doctors. I was excited. It was so nice to recognize a deficit and have optimism that I could make it go away.

The major triggers I had more control over were yard work and food shopping. Unfortunately, I had less control over paperwork for attorneys and doctors. Paperwork had to be categorized as “suck it up, buttercup.”

I scheduled yard work twice a week, so it was spread out. I linked it to the sprinkler schedule, which goes on twice a week too.

I scheduled food shopping once a week to help with planning and controlling spending. I linked it to a day that Publix sales start.

This allowed me to space out the tasks throughout the week.

I was also exposed to some brain injury tips & therapies online, where some patients were swearing by what equated to sensory deprivation. They would lay in saltwater floating chambers, negating light, sound, and their own body weight for a set amount of time. I did the budget method. I would use an eye mask and active noise-canceling headphones.

Food shopping is a great example of a task where overstimulation can happen, even for a non-brain-injured person. The fluorescent lighting, the sounds of other people, the sounds of the PA/music, the attention-seeking marketing, the pricing calculations, the oncoming carts, the kids, the smells. Processing all of it was now challenging to the point that I’d have to treat it like a phobia. Introduce a little bit back into my life and get on with it.

I started shopping when there were fewer people. I wore a hat, sunglasses, and headphones. I looked like a weirdo, but I haven’t cared about that in a long time.

I’ve meditated on and off since college. I’m familiar with the sense of ‘being in a good place’ to experience a successful session for myself. I’ve also experienced difficulties and failures, where meditating just wasn’t going to happen in a way I was striving. Too much stress or too many distractions would cause me to end the sessions.

After the accident, I had meditated now and again. It wasn’t really beneficial. I couldn’t find a rhythm. It was challenging and it was frustrating. I couldn’t focus on my breath and I couldn’t narrate my thoughts. I felt broken. My inner dialog had been broken since the accident. That little voice in your head, the one I relied on, wasn’t communicating fluidly or effectively.

The first time I meditated with the headphones and eye mask on, I immediately knew it was helping. The mindful narration returned and I was able to have what seemed to be one stream of thought again. It felt so amazing and relieving.

I took the headphones off temporarily and I heard the fan in the room, the air conditioner in the vents, and other environmental noises.

I put the headphones on again and most noises were whisked away.

I did the same test with the eye mask, but removing it and placing it back on wasn’t as significant of a difference. The headphones were night and day. It was the catalyst for recognizable thought and mental discipline. It literally created the environment my brain needed to start repair.

At that time, I didn’t expect was how much it would help me create endurance for day to day stimuli that I was struggling with. It was another turning point in my recovery journey. First, I had learned what other people were experiencing, so it took away the sense that I was alone and no one understood what I was going through, or believed what symptoms I was dealing with. Now, with the headphones and mask meditation sessions, I was returning to my stress-resistant self. I was still vulnerable to stress, and I had to discipline myself to recognize when I needed to relax in a quiet zone. I would do it after stressful moments or if I knew I had potential stressors coming up. It was so helpful. It made me wonder what the saltwater meditation chambers were like.

I was combating the fatigue by chopping up tasks into smaller pieces and becoming comfortable with performing work in those chunks when necessary. Some days, I may only mow the front and then I’d do the back the next day. That was okay. No one died.

Right now, the only fatigue that catches me off guard is when I do too much. My body lets me know. It’s difficult to balance ‘doing more’ and ‘doing too much.’ I started having confidence in how much I could handle over time. I’d plan around it. I’d create goals for the day and have some stretch goals too.

I still felt self-conscious about some of these adaptive steps at times. It felt weird to plan some rudimentary tasks out. It felt silly to plan for the day I may shower and shave my face and head, but I had to. I was oddly fatigued after doing it. I would literally be out of breath doing it. In the early weeks, that was my success for the day. I shaved. After that, a big rest was coming. For those early weeks, those were my successes. I worked on accepting that this is the way it was for now. Next week may be better. If not, at least I had a coping mechanism. Over time, it improved. I showered, shaved and shopped. Now, I’m back to normal with those tasks. I still don’t get excited about shave days, but I do it and it doesn’t require a rest.

I still overdo it on some days, but thankfully, it’s less frequent. There are days where I have high energy and high motivation. If I’m not careful, I’ll overdo it and it’ll cost me two days of recovery. I have not been meditating with my headphones as a preventive measure. That’s where I could improve. I do it after I overdue work, though. So, I can improve on that. I should set a daily alarm :/