Understanding the way fatigue effects an individual after a brain injury is, in my opinion, one of the most important parts of recovery. I’ve read about, and witnessed, how all other symptoms can get significantly worse once fatigue sets in.
Fatigue post TBI seems to be different than pre TBI life.
First, it sets in earlier. Where pre-TBI Jason could fly across the world for a few meetings and never miss a day of work upon return – post TBI Jason struggles if we change his sleep schedule by half an hour. Before Jason could survive on 5-6 hours of sleep a night for months on end, he now needs at least 10 hours a night to function. I speak of our experiences but in each book we’ve read the authors experiences mirror Jason’s. In support groups it seems to be one of the symptoms that is hardest to live with.
Second, it set in unexpectedly. Post TBI having to carry out a conversation, or answer emails can prove to be exhausting. It is also sometimes called cognitive fatigue because it tends to be brought on by completing “brain work”. For Jason skills such as multitasking, planning, decisions making, prioritizing, listening to instructions, remembering lists are all extremely tiring now. We have literally had days where Jason might “only” need to make two calls with specific questions for each caller and write an email about the responses and completion of that task might require that he take a nap. These were tasks that were done while also making dinner and training our dog before!
Third, it takes longer to recover. This has been the hardest lesson for us (in fact one year later we have only just learned a good analogy for this, it will be a separate blog post!). Previously a quick twenty minute nap might have been enough to recharge Jason if he was tired (usually this only happened after coming back from China or Australia). Now if he’s pushed his limits it takes a 1-2 hour nap. If he stays up a half hour late it seems to take another hour or two in the morning to make up for it.
Fourth, it can’t be ignored. Without fail I have heard this message from people with TBI and strokes. Once fatigued they are done. Pushing through it (as everyone seems to try) tends to lead to a worsening of other symptoms. I know back when we were naive and working with a doctor that didn’t understand brain injuries we tried to push Jason through the fatigue. Tasks would take longer, Jason’s way of doing things would baffle me, and on really bad days Jason would have a panic attack. Jason is not prone to panic or anxiety and in fact tests showed he is emotionally “resilient” but once fatigue has taken over all bets were out the window.
It is really essential to start re shaping one’s ideas about fatigue and rest post TBI to make the most of recovery. It can be hard to understand so we will be posting a few of the analogies that helped us understand and explain to others in separate posts.
Here are a few other links to understand the prevalence of fatigue post TBI (you really aren’t alone in this!):