In the past few weeks I have reached a number of encouraging milestones. Each one is a reflection of some part of my journey of recovery and acceptance of living with a brain injury.
1. I was discharged from receiving OT ( occupational therapy) services and able to successfully plan my days and manage my limitations.
2. I was informed that the inflammation in my brain is totally cleared and the brain function in the concussed area looks normal. I am almost five years post injury.
3. I am recently able to manage between six and eight hours a day of physical activity, without needing a nap to make it through the day. Physically demanding work doesn’t have the same tiring affect on me as cognitively demanding activities.
Being a Guinea Pig
I recently agreed to participate in a brain injury research project based out of Britain that is focused on assessing and quantifying a person’s executive functioning following a brain injury. While I had no idea what was involved I decided it was important enough to help where I can. I had very little idea of what my participation entailed. All I knew was that I had agreed to give up about three or four hours of my day. This included driving 50 km to the testing site.
The testing involved completing a number of tasks, including an injury related interview and a written questionnaire related to my daily functioning in the past month. That was followed by a couple of cognitive activities requiring a certain degree of concentration and problem solving. Once these were completed I was put into a real time job simulation for about 45 minutes.
I left the testing site after about two hours of doing cognitive activities that required a high degree of focus and attention. The time went surprisingly fast. The testing environment was pleasant and supportive.
It wasn’t till I left the testing area and sat down to wait for my ride that I realized how tired I was. I was in a daze. It wasn’t till I sat in the waiting area that I became aware of the extent of my neural fatigue. I found myself tired and yawning frequently. I felt like going to sleep while at the same time feeling restless.
I quickly realized that I was in no condition to drive home. Fortunately my spouse had realized that before we left home and had planned on doing some personal errands while I did the guinea pig work. We made one stop on the way home to pick up some groceries. That went alright. The physical effort of pushing a shopping cart around was a welcome change to the cognitive tasks I had been doing.
As I was heading home I recognized the type of headache that I get when I’m dealing with inflammation in my brain. That came as a surprise given the “all clear” I had recently been given. Despite the “all clear” on inflammation and the concussed area of my brain functioning quite normally, it is important to continue to manage my limitations. The concussed area is weaker than other parts of the brain, and overworking that area definitely has negative consequences.
Change of Plans
By the time I got home I knew I needed to reschedule the rest of my day. Cut out all activities that are predominantly cognitive. Even those that are not cognitively very demanding. From past experience I knew I needed to switch my activities to ones of a physical and somewhat repetitive nature. So my schedule change looked like this:
– Canceled my ticket for a live drama performance that evening. Too much thinking taking in the story line and all the other sensory input that happens during a play and being in a social setting. I would be too restless to sit through a lengthy performance. I would likely lose focus. And it would delay my recovery from the headache.
– Canceled going over to visit my grand kids. It would be too busy an environment. I would lack patience from time to time. Not a good way to deal with my grand kids.
– Went outside and picked beans. (October is not fresh bean season. I was picking dried turtle beans.) The job is quite repetitive and allows me to deal with some of my restlessness. I have found being outdoors to be the best place for recovery. Doing a solitary activity allows me to be totally in my own space.
Further side effects
I went to bed at my regular time. Not so much because I was physically tired or sleepy, but as part of properly managing sleep hygiene. It took me over an hour to get to sleep despite not having had a nap earlier in the day. With the neural fatigue aches a pains become amplified. (I’m still dealing with a shoulder injury from late September as a result of a mechanical failure with my unicycle.) Some time in the early part of the night I woke up, struggling to get out of a nightmare.
I had not had a nightmare in over two years. I’ve come to realize that the greater my neural fatigue the greater my risk of having a nightmare. It seems like the neural fatigue, when it gets severe enough my brain gets confuse and I can’t distinguish between reality and what is a dream. It was upsetting to once again find myself in a situation where I was anxious about getting back to sleep. Fortunately there was no repeat.
It’s been awhile since I’ve experienced this level of neural fatigue following a somewhat normal activity. Today’s experience and it’s after affects reminded me of what I experienced quite regularly in the first few years following my injury. I would find myself in this type of space after simply trying to get through a normal day. (Over against today having done a forced situation with the intent of pushing me beyond my normal limits.)
I woke early the next morning. By 5 am I was too restless to sleep. I got up and moved around for an hour. I lay down for an hour before getting up for breakfast. It didn’t take long for me to realize I was feeling emotionally vulnerable.
Mid morning I found myself humming tunelessly from time to time. A sure signal that my sensory loading was ramping up quickly . I also noticed my jaws were clenched, being unable to properly relax. After spending a half hour with my grand children I was getting restless and needed to move to avoid going into sensory overload .
The second night sleep evaded me for a long time. Along with that I woke up very early. With only three hours of sleep I knew I had to lie low for an additional day. I did some yard work but was held back by my low energy level. After a couple hours things improved. In the end I spent most of the day doing some very repetitive work – picking turtle beans. By supper time I had filled five 40 lb bags of beans. I felt good and tired. That would help me sleep better.
Change of mind
Given the dramatic and disruptive effect being a guinea pig had on my day and the following day I’m glad I had signed up for just a one off volunteer experience. Had the testing involved tracking me through a series of events I would have had to make a tough decision. Either dismiss myself from the experiment or plan each testing day so that I would have no other commitments. Even so, knowing I can’t alter the side effects of the testing, my ongoing participation would have been a tough call. Fortunately they only needed to collect my data for a one time event.
Following the testing experience it made me realize how much my healing has progressed. It makes me thankful for the increased level of endurance for a broad range of activities. I was reminded how important it is to plan strategies that keep my activities within my limits.
I felt I was in familiar territory, dealing with an extended period of sensory overload. I knew what to avoid. I knew what kind of activities were helpful. My three and a half years of training was put to good use. I remained upbeat and hopeful that this would soon pass.
Despite careful daily planning it doesn’t take much to have things go quickly goes off the rails. It happens anytime I misjudge the demands that an activity can place on me and push me beyond my limits.
And lastly I’m thankful for professionals who are constantly looking for new ways to help people living with brain injuries and helping them improve their quality of life.
Little did I know that the three hour committment would end up taking the better part of three days out of my life. Take it for the team!