Over the last ten years since I began having trouble with my brain, and having bad brain days, many people have asked the question, “what is a bad brain day?” I will do my best to answer.
From all of our research ( M and myself) and from listening to and speaking to other people with a brain injury, the list of symptoms is quite broad. Everyone’s brain is a bit different, and the way each brain responds to injury also differs. I will stick to the symptoms that affect me. If there are brain injured people reading this, some of the symptoms will be familiar and some may not.
Bad brain day problems for me can range through the following.
Major headache, dizziness, nausea, confusion, inability to speak, weakness in the hands, tingling in the hands, tingling in the mouth and tongue, light sensitivity, noise sensitivity, irrational anger, lack of motivation, lack of coordination, partial seizures, and frustration.
Most times, I can control these things by taking care of myself. What does that mean? It means getting enough sleep including napping, exercising, and paying attention to how I am feeling in general.
For instance, today I had to drive to Boulder by myself. Normally M would have gone with me and probably driven so I didn’t have to stress about the drive. I made it to Boulder and back home again with no isssues which is a big accomplishment for me. However, walking home after picking up M at work, I began to feel myself fading. My head began to tighten, my mouth started to feel different and my hands began to feel weak. For once, I did the right thing and told M right away and we both cut back on the chatter since talking more can make me worse. By the time we got home I couldn’t speak without great effort, and I was very hungry. This time I was able to make myself some food which usually helps at least a little. It was also time for M’s run, so she left and I didn’t feel the need to speak as I normally would. I did what I usually do when this happens and sat down to read. Some people have asked why I don’t watch tv or play video games during these times and its because those things can make me very nauseous.
How do M and I keep track of or determine how I am doing? Although its now unspoken, we generally think of my brain having a brain bank. Everything I do causes money to come out of the brain bank. If I spend too much, just like in real life there are consequences. In order to not overspend from the brain bank, we try to limit my daily living to the bare minimum of work, exercise, eating and sleeping. We do not go out much because there are lots of extraneous things for my brain to process at places like restaurants and movie theaters. When there is something extra required, like today’s trip to Boulder, we plan ahead and make sure I get plenty of rest beforehand, take plenty of snacks and cut out any thing else we can think of so I can be as prepared as possible.
All that may make it seem that we live a boring life and there is some truth to that thought. We tend to see it as a simple life and we make every effort to enjoy this life as hopefully seen in our traveling and running.
How do we travel with all the baggage I naturally bring along (pun intended)? It’s really a question of logistics. In other words, M handles all the logistics. I just go along and make sure she can speak English correctly to the customs people after the overnight flight.