Stories about Fatigue after Brain Injury
The following are stories of real life survivors of brain injury. Clicking on the titles will take you to their actual story.
One of the biggest common denominators of brain injury symptoms is fatigue. Just as your battery would run down faster on your laptop if your computer starting running hot, a brain injured person required to over-attend in the world around them, like a store or a restaurant, will run out of energy quickly. Angela says: Well, I’m always exhausted. But I don’t ever sit down.
Fatigue is not as big of a problem for Betty as for some survivors, but she does find that lack of energy does make it more difficult to complete her household duties and to stay on task.
Fatigue is another common denominator about brain injury. Its causes are multiple, including the draining of cognitive reserves from over-attending and stress, in combination with pain, depression and poor sleep. What about fatigue? You mentioned that you need to take naps and that tomorrow’s going to be a lousy day; and you know it’s going to be a lousy day and that’s because today’s a hard day: “I’ve very seldom done anything for 12 straight hours and I’m going to today. I’m already, I can feel bags. My chest is getting tight.” Tell me about fatigue in a normal day. This isn’t a normal day. Tell me about fatigue in a normal day: “It is weird. I can tell you that I’ve gotten up at say 8:30, most days I don’t just jump into the shower unless I have to go somewhere. I go to dishes or something and try to warm up easily. Medications, maybe shave, brush teeth, something like, you know, easy going. A lot of days I don’t turn on the TV for a long time because of that mental stimulation thing but I have gotten up and taken a shower and gone back to sleep for three hours. I’ve gotten up, walked to the mailbox and come back and taken a nap for three hours. I’ve gotten up and ridden a bike 10 miles, in an around town and gone to the store and then take a nap until 6:00 in the afternoon. There’s just no rhyme or reason and that’s what I’ve tried to explain to everybody and no doctor’s ever written that I’ve become so amazingly consistent.
Gina explains that she gets tired as the week goes on;”What my boss does understand and still allows is I get tired and as the week goes on, I get more and more tired so he will let me either take longer breaks or come in a little bit later.”
Concentration related fatigue ( brain injury fatigue ) is one of the most common problems after brain injury, even mild TBI.
When neuronal connections within the brain are compromised, the brain works far less efficiently. In order to compensate, it is necessary to give extraordinary concentration. As anyone who has driven in a snow storm knows, the more you concentrate, the faster you tire.
Helena talks about how she tires easily; “I do get tired very easily, but I have no qualms about saying, I’m going to bed now, I’m taking a nap, you know. I say well I’m going to take a nap first, bye.”
Ian talks about how he tires much more than before the accident; “Strength is the biggest issue, running, throwing, stamina in certain areas. I just, I might do something for a little while or try to do something strenuous so, so to speak, and I might be able to do it and other times I can’t. And all I know is either that afternoon or for the next day or two I am just tired to the point where if I’m sitting in a chair watching a TV show, I’ll fall asleep for no apparent reason at all.”
When asked “Is the biggest problem with your right side more fatigue than it is lack of coordination?” Ian responds; “Yeah, I would say â€“ well, in that area, it kind of balances between fatigue and coordination.
“In October, no in September 2006 I started trying to work part time (almost three years after his injury). Well I, I was afraid to go back to work, because I knew it was going to be another difficulty, but once again, it was one that I wanted to prove that I could do, and I, I knew I could only, because I couldn’t stay because of fatigue, I had to rest and such.” Fatigue is a very big problem. I still have fatigue fairly good, but I manage to push myself as much as I can and do what I can. You get tired when you’re hunting and pecking, yeah, and on a moving keyboard. Well I, I shouldn’t, I shouldn’t answer that. “
When asked he if gets frustrated with people who do not understand his disabilities and ask him to do certain things he responds with; “I had the most difficult day already, because we’re doing remodeling, having our house remodeled, so I have to go to the store and gets parts for these people and I have to do physical activity myself which is very difficult, because when I need to do anything it is not natural anymore and takes, but so it tires me out, so I’m very tired and then she asks me to go get this out of the car for her, and I’m like, you know, well don’t roll your eyes.”
Do you get fatigued?: “Sometimes.” Do you sleep well?: “Oh yeah, I think I do. I go to bed, I got to turn in.”
Have you had sleep problems over the last 25 years?: “I know that I slept a lot early on in my development, redevelopment. Even when I moved into my parents’ home and when I moved into my apartment and when I moved in with my boyfriend, when I got married and we lived in our house and, and all through work and everything I’ve always, I sleep a lot. I need sleep a lot. And I definitely feel refreshed after sleeping a lot and I know that I sleep more than anyone else my age.” What do you think the explanation is for the fatigue?: “I think it’s mental exertion. So in my book, when I was writing my book and reviewing my book and editing my book I could do it for an hour or two hours and I had to take a nap. And then I just got used to that and I was able to do it and I could finish my book more on time. And last night until about 10:00 last night I was editing the audio version of my book so I’m sure that’s why I was so tired last night.”
Lets about fatigue. Do you have problems where you get tired after a certain period of time?: “Most definitely.” Tell me about that.: “Well the medications I’m on usually kick out or they usually stop working between, around 7.” Seven at night?: “Seven p.m. I get tired, I’m more easily frustrated.” During the day even with my meds I usually take a nap. I have been watching my youngest son right now and I’ll stick him in for a nap so I get to take a nap. The other ones are at the Boys and Girls Club or over at their grandparents’. So I try to make my day a routine, um.” You get tired faster when your day involves more multi-attending?: “Most definitely.” Tell me about that. : “Well, I keep everything on my phone. I mean if I have a lot of stuff. Usually if I have a lot of stuff to where like say I have to be over here to pick up the kids and then I have a doctor’s appointment and then I got to be back to the place and then somewhere else, by the time I get to the third place I’m just wore out. And with the kids I start to be short with them and frustrated because they’re kids and they get bored. But I’m very lucky to have my fiance’s parents willing to help.
One of the areas that, that we were just talking about when he had to end our interview the last time was fatigue, and you gave me some information about that, but how does fatigue impact you on a daily basis? : “I guess the best way to explain it is: I go to church at First Presbyterian, and they always have a little session before church goes. As of late, the last few times I’ve been there going through those sessions, I’ve slept through them literally and snored. But I fall asleep anywhere, anytime. If I mow the grass I have to mow it in bits and pieces, because I get too tired. My wife and kids are starting to understand, it’s not, I’m not being mean, it’s just that I can sit on the couch watching television, the next thing I know I’m asleep.” Just anytime you let your senses sort of tone down it’s harder and harder?: “Right now I’m sleeping about, I’ll go to bed at 9:30; I’ll get up at 9:30 the next day and I’ll still be tired.”
Did you miss work because of pain related problems that you were having?: “A little bit. But my issue was my sleep issue.” Explain: “I don’t know if I would get myself hyped up or whatever but I know one incident when I first got hired at Best Buy, I ended up sleeping for three days and so the only time that I got up was to use the restroom and then go back to bed.” So the process of going to work just exhausted you?: “I think the thought and being back out there (1) bothered me; and (2) scared me.” So, even though you were working with the DVR your attendance at least at the beginning was a problem.: “It took about two weeks.” Do you find yourself getting extraordinarily fatigued at work?: “It depends on what I do. If I have to, well depending on how I do it, when I worked at Best Buy, I used to do a lot of straightening. I can sit. I have a hard time walking and standing. During the fall and winter months there is a lot of times when I use a cane because of my knees. When I go to something to where you have to, an example would be church, where you have to stand and sit, I sit. And it hurts me to stand and I begin to sway because I have no equilibrium.”
Does she have problems with fatigue?: “Yes. When she starts getting tired there’s, then the emotions just..
Is pain or fatigue a potential variable factor in that?: “Absolutely. He, he definitely gets fatigued anytime he has to do any significant amount of physical exertion, or mental exertion. He gets very fatigued; and the fatigue may play a factor; but when he’s in pain, and he doesn’t feel well, he definitely tends to act out much more and much earlier in a conversation.” Brain injury is thought about too much as simply a cognitive or frontal lobe challenge, yet the two most common denominators across all levels of TBI severity are headache pain and fatigue.
I haven’t asked you about fatigue and sleep, is that, are those issues for you?: “Yeah. If I do a lot of brain things during the day, I often have to take a nap later in the day. Or I just have to sit away from the computer, maybe have like the TV on in the background and just, take a nap or close my eyes and just get away from the world. Not as often as it used to be, it’s gotten better. I nap a lot less than I used to, maybe a couple of times a week instead of seven days a week where it used to be. I’m going for a sleep study because I have sleep apnea.”
Does the process of going to the grocery store wipe you out?: “Yes sir. Most any, I do a lot of things but if I do spend an hour of intense focus on certain tasks there’s a good hour and a half to two hours that I’ll sit there and really just absolutely do nothing and decompress. I can’t really think about things. I can’t really do anything. There’s no task performance. I mean I will really just, I just can’t do anything.”
Michelle talks about his problems with fatigue: “TJ gets exhausted but he, um, has a difficult time sleeping. Now, with the new sleep apnea machine, and we’ve found a very good neuropsychologist for him which we love, I love, which is very important, but he’s on the, this sleep apnea machine so he is sleeping better, so we’re hoping that it’s going to tone down the outbursts. But TJ, due to the tremors, he fidgets all the time, so he never falls completely asleep.”
Do you have problems with sleeping?: “Yeah, very much so. I can’t seem to sleep from the crash.” So tell me about a typical 24-hour cycle. What time do you go to bed?: About, because my doctor killed my insomnia I go to bed early now. I used to be up to about 3:00 or 4:00 in the morning and get up like 8:00 and now I’m going to bed at about 12:00 and getting up at about