Doesn’t a nap sound good?
Whenever I am faced with a task – physical, mental, or emotional – I am reminded, once again, about the reality of TBI related fatigue. Yeah, you guessed it – that happens every day! Now, some of you are no doubt saying, “Well sure, we all get tired sometimes.” And although I’m in no way trying to diminish your fatigue or how hard you work – I must argue that there is a distinct difference between the fatigue that I’ve experienced and that of your average person without a brain injury. In addition, I’m aware that there are other medical conditions which produce fatigue; and I think those types of fatigue may be like what I’m discussing today – I don’t know for sure, because what I do know… is TBI related fatigue.
Now, I’m not complaining about fatigue – ok, maybe just a little. For me and other survivors, it is a fact of life, and one that most people don’t fully comprehend. I’m hoping to help bring more understanding to this common phenomenon. Like so many deficits caused by brain injury; fatigue is somewhat invisible, difficult to explain, and difficult to understand. It can “hide” as agitation or confusion or just that blank “deer in the headlights” gaze without much memory of the events occurring when a survivor has reached maximum overload. Now that I’ve lived with TBI related fatigue for over 20 years – I am pretty good at managing it and it is much less problematic than in the first few years following my injury.
I will first try to explain it in a couple of different ways such that people who haven’t experienced this type of fatigue might be able to relate.
I borrowed this idea of fatigue, and it fits well for what I’ve experienced: Imagine that you start each day with a certain amount of dollars. If you’ve don’t have a disability, you probably have about 25 or so. With a TBI you have approximately 15 (more or less). Now you have a list of activities that need to be done which each cost you:
|Get up, get dressed, eat breakfast||$3.00||$2.00|
|Get kids ready and off to school||$1.00||$1.00|
|Go to work, full day, return||$8.00||$6.00|
|Pick up kids||$2.00||$1.00|
|Afternoon activities (sports, errands..)||$3.00||$2.00|
|Make dinner, homework, bedtime…||$4.00||$3.00|
|Available dollars each day:||$15.00||$25.00|
|COST of managing basic daily activities:||$6.00||$10.00|
So, basically this example shows that the average person starts out with more energy and requires less to get through a typical day. Starting out with less energy is due in part to disturbed sleep, some debt from the previous day, but also inefficiency of the brain due to injury (which is always present).
You can see that the average person usually has some money left over for evening activities (going out to dinner, socializing, playing games with family before bed, etc.) but the TBI survivor is already in debt. Sometimes all they can do is the absolute necessities and then basically stop functioning. The person may be awake but not processing much of what is going on around – and without the ability to act socially. This can be embarrassing and isolating.
Activities that happen later in the day also cost more for survivors because the inefficient brain must work harder and is slower. In addition, certain activities – especially those that require “new learning” or “socio-emotional energy” cost more because they require the inefficient brain to work even harder than it normally does on a regular basis. Whereas, the average person has a “reserve” – the TBI survivor rarely has a reserve of energy at the end of the day. Some survivors may even need to take naps or “brain breaks” during the day to increase the amount of money that they are able to use. If the “debt” exceeds what a survivor can make-up with sleep, then they may not be able to function at all the next day or… function very badly. To make matters worse, often, survivors of TBI don’t get good sleep due to anxiety, insomnia, etc. (another topic for the future).
Although all survivors experience some degree of fatigue; survivors who have moderate fatigue and are trying to live and work as average people probably have the most difficulty because our society doesn’t usually allow for “brain breaks” throughout the day. TBI survivors are expected to keep up with their peers or else find something else to do. Is this fair? Maybe not, but whoever said that life is fair!
Ok, so let’s move from realism to a touch of optimism! Next time, we’ll talk about some strategies to improve fatigue, get more dollars out of your day, and have a more happy and productive life. It is what it is, but let’s make the most of it!
Until then get some good sleep!