Hope Speaks Additional Challenges
Fatigue, Low Energy, and Sleep Disruptions
Fatigue, low energy and sleep disruptions are some of the most commonly reported complications after a TBI.
Changes in sleep patterns are common. Sleep cycles may feel reversed, with lots of tossing and turning at night and sleepiness during the day, making it difficult to wake up or stay awake.
Severe fatigue can lead to confusion, forgetfulness, inability to focus, anger, irrational behavior, feelings of sadness, or many other challenging symptoms.
The question becomes:
What can I do to take care of myself and feel more rested from day to day?
“Fatigue is probably the biggest and hardest challenge to overcome because I never know what’s going to cause it and how to recover from it!”
“So that’s another piece of the puzzle: estimating how much energy I’m going to need for everything. And I think that’s why we brought that up in the CSU TEDx Talk, because it’s so important to recognize how big a role energy plays in our day-to-day lives. I’m often trying to understand why I’m so tired at night and what I can do to make that a little easier and figure out what re-energizes me. I try to estimate the energy requirements for each day.”
“You need to rediscover your hobbies and find all the things about life that you enjoy. That’s been important for me—trying to find those activities that really boost me up, or give me an energy shift.”
(Update, 13 months after interview) “I am happy to report that I finally understand ways to help mitigate the effects of stress! It turns out, sleep, regular walking/exercise, meditation, journaling, and healthy eating habits are all VERY important. I used to have a sense of dread each morning when I would start my day. Now, I have a regular routine and I feel a sense of accomplishment, sometimes even on the “bad” days.” ~Lauren
“My overall energy affects my daily life more after my TBIs. I think it’s tied to my vision issues. Whatever it is, I’m just exhausted after doing four or five hours of any activity. It really limits what I can accomplish during a day. I’ve noticed that I may sleep ten hours and still need to rest a few more. It feels like my window for accomplishing things during the day is very small. And if I push that, I feel horrible and it affects my productivity over the next few days.”
“I would say that between low energy, reading difficulties, and light sensitivity, that’s 99% of my struggle.”
(Update, 14 months after interview) “Neurofeedback therapy has helped with my sleep regulation. I am now able to sleep 8-10 hours a night. Before, my schedule was reversed and I was sleeping more during the day and needed 4 caffeinated drinks in order to stay awake. My level of exhaustion is much less now! ~Brandon
“I still love hiking, and I went for a hike and I was totally fine. However, a week later, I went for a hike and I had to stop and sleep for two hours beside a path on the mountain because I couldn’t go any farther. My friends wanted to keep going, but I said, ‘I’ll just sleep here on the side of this path.’ I’m sure I got weird looks from a lot of people, but it’s that understanding of your body and sometimes saying you can’t do any more!” ~Brett
“I probably struggle most with ‘How do I make sure that everything I need to do gets done?’ I need to do things in a way that’s most helpful for my brain and that doesn’t negatively impact other people.”
“I think it’s really important to know what is truly important and what has to be done. Time management and organization have been huge tools in that regard. If I can make a list of things I need to do and prioritize that list, it really helps—like asking myself, ‘What has to be done right now, right away, or the world will end?’ (laughs).” ~Lauren
“Sleep is not an easy thing for me. Since this recent TBI, I’ve gone from lethargic and sleepy to now being lethargic and sleepy but not able to sleep. I went from sleeping many hours at night and a two or three-hour nap during the day, to sleeping two-hour stints in the evening and none during the day. It’s been detrimental to my ability to handle and cope with things. Lack of sleep affects your emotional health, your physical health, and your general happiness.”
“What I’ve learned is that saying you’ll catch up on sleep tomorrow isn’t the case. If you don’t sleep tonight, you’re not going to catch up on that sleep the next day by getting an extra hour. With a TBI, you feel those effects, not today necessarily, but in three days. When you feel like you need down time, give yourself down time. If you don’t, you might not notice it right now, but in a few days you’re going to say, ‘Man I’m just not myself and I don’t understand why.’ You think back two or three days, and you’re like, ‘Oh yeah, I didn’t sleep that night.’ Learning how to balance that has been difficult but instrumental to functioning every day.”
(Update, 11 months after interview) “It has taken about 2 years for my sleep to become more regular. I am much better at following a routine, which is very important. I only have about 1 or 2 nights a week that are not the best. Last year I was constantly feeling lethargic. Over the last 6 months, I have not needed to take any medications to stay awake or help me sleep!” ~Brett
“I really like The Spoon Theory by Christine Miserandino. Basically, she uses spoons as a metaphor for energy. Every person starts the day with a certain number of spoons. It might be 100 or it might be 10, but every task you do throughout the day costs a certain number of spoons. And each day that cost can change. One day, making breakfast might cost you two spoons, and the next day it could cost five. It just depends on everything else that’s going on in your life. I might start the day with 15 spoons, but if going for a run costs me 10, then it’s not worth doing that because I won’t have enough left over for everything else I need to do. And when I don’t go to bed on time, then I am automatically cutting my spoons for the next day.”
“I can feel it. If I stay up late, it’s like I get this helmet that just keeps squeezing tighter and tighter on my head. That won’t go away until I have at least ten hours of sleep. If I go to bed at 11:00 pm, but I have to be at work at 7:00 am, that’s only eight hours. I need more sleep, and that automatically makes my next day worse. So I have to go to bed on time.”
“Elastic energy is a really valuable concept, as well, because things can also rejuvenate you. For me, exercise adds spoons back in, even though it costs a certain number in the moment. It helps give me more balance throughout the week as a whole. The Spoon Theory definitely has been a huge tool for helping me understand myself, but also for helping other people understand why reading costs me 20 spoons, and that’s just so much work!”
(Update, 13 months after interview) “Routine, routine, routine! It cannot be overstated how incredibly important routine is in your day. No matter how difficult it feels at first, make a routine that includes enough sleep, healthy eating, regular walking and exercise, and personal ‘you’ time, and then STICK WITH IT! Also, try to work during your naturally “best” times of the day. For me, I am most fresh in the morning and can be most productive then.” ~Lauren
- Cognitive changes following a brain injury may include memory loss, decreased processing speed, difficulty concentrating, reading comprehension issues, decreased organization, difficulty initiating tasks, and other challenges.
- These changes can range from mild to severe, and may vary on a daily basis.
- A brain injury can make it difficult to plan, or remember conversations, appointments and to-do items.
- The ability to focus may also be diminished.
- Simple tasks, like following a simple cooking recipe, may now seem confusing and require more time and effort.
The question becomes:
What can I do to improve my productivity and the completion of daily responsibilities?
“After my second TBI, I remember having tons of fatigue and memory loss. I couldn’t remember that I’d had conversations with people. I struggled in class. That was a very hard semester for me, and that’s when I started failing classes. I also started having severe stomach issues. I started having lots of pain. So the next semester of school I was failing classes again. I had no ability to take an exam and understand what was being said on it.”
“I got connected with the disability service office on campus and the Opportunities for Post-Secondary Success (OPS) program, which helped me realize that this was a serious issue and not just the other stresses I had. This concussion really changed a lot of things for me. I worked one-on-one with an OPS program mentor for the next three semesters and really got back on track. I became more aware of my challenges: reading comprehension, concentrating, sensory issues, difficulty initiating things, feelings of being overwhelmed, constant fatigue, migraines, and a host of social anxieties.” ~Lauren
“Reading is something difficult for me, with the visual stimulation and tracking it requires. The software I’m using reads aloud and also tracks the words it is saying, visually giving me a point to stay with instead of having to constantly keep track of where I am. Not being able to read easily has been a challenge through school and work. Luckily, technology has helped that. For instance, if I’m handed a paper in class or at work, I can just scan that in and have the computer read it to me.” ~Brandon
“During my rehab stay, following my motorcycle accident, I wouldn’t remember my parents coming in and out of the room. One time they left the room, then came back in, and I was like, ‘Oh hey, it’s so good to see you!’ And my parents said, ‘We just stepped outside to get a glass of water!’” ~Brett
“As far as reading comprehension goes, I would say the biggest, overarching problem is avoidance of the issue, because sometimes it’s just easier to say, ‘Oh, I’ll just have somebody else read that for me’ or ‘I just won’t read for fun.’ That’s definitely a big problem. But reading is something everybody has to do and it’s required for almost everything. The best tool I use is an overlay for computer screens. It’s extremely helpful and it’s really simple – a quick download for your device and it automatically helps, so that’s really nice! The other thing that helped me a ton was physical therapy. We worked a lot on my eye muscles. Doing reading exercises helps a ton, too—when I actually make time to do them!” In the third year of college, I started feeling much better about school. It was almost like a light switch turned on and things started to get better. We had done tons of tutoring, and I worked with OPS for many semesters and became a mentor, and that really helped me progress through my brain injuries. I started getting a lot better, my headaches were less frequent, and I just had fewer issues with things.” ~Lauren
“After my TBI, I was failing my calculus class and the only way I could pass was if I got a high “A” on the final exam. I studied my ass off and tried really hard, even though some stuff wasn’t clicking, or I felt like it wasn’t. I felt I couldn’t retain the information because I’d take a sample quiz and get all the answers wrong. But then I got my exam score back and I did get the “A” and passed the class. That was a time that I felt successful!”
(Update, 11 months after interview) “I have found a significant relationship between how I take care of myself (sleeping and eating better) and improved brain processing speed. Better self-care has helped my processing speed!” ~Brett
Depression, Anxiety, and Other Mental Health Challenges
Depression, anxiety and other mental health challenges may arise after a TBI. These conditions may stem from the injury itself, or from the challenges and stresses brought on by the injury.
Depression and anxiety can be serious and even life-threatening. They may cause you to feel you’re in a hopeless downward spiral, physically, mentally, emotionally, and socially. Extreme feelings of isolation, stagnation, and apathy may lead to thoughts of suicide.
It is vital to reach out to others, as noted by each of these students, who each share the same message: There is HOPE!
The question becomes:
What can I do to ease my feelings of depression and anxiety, and how can I cope with these and other mental health issues?
“Things were buried so deep, underneath all of the muck that was the hell I lived in for many, many years. The pieces of myself that I hated seemed to be the biggest pieces of my life. I kind of describe it like this: my mind is a garden and gargoyles to me are very ugly and dark, and there is this gargoyle that takes over everything. I don’t think I could have changed that perception if I hadn’t worked with somebody who helped me change it. Working with a counselor or professional who can help you sort through some of the things in your mind is one of the biggest and most important things you can do, I think. Also, just finding the parts of yourself that you like. For me, a lot of it was coming back to the drawing board over and over, surrounding myself with positive people; I think that’s hugely important. I realized through a couple of experiences that it was the people who would keep drawing me back to, ‘Oh, this is good, this is healthy, and it’s going to be okay.’”
“I also did a lot of work on my own, processing why things are okay and journaling about it. I’m a very reflective person. I want to be high functioning, and for me it took a lot of self-work to get to a place where I would take the tools I was given in therapy, counseling, and art therapy, and apply them to every situation in my life. Over the years, it seems to have been improving as it goes. I’ve become more mindful about things.” ~Lauren
“I didn’t recognize that things like depression and anxiety were part of having a TBI. And so those things started to get worse and worse. Then I started taking anti-depressants and anti-anxiety medication. I didn’t see a correlation. I never informed my doctor about my TBI. I didn’t think it was pertinent. I did notice a trend of feeling depressed and being quick to anger, which resulted in many broken doors and fists! But I didn’t attribute that to anything other than I was just a teenage boy.”
“Sleep was a problem even before my latest TBI, but I never thought that it might be attributed to my first TBI. I would spend anywhere from 24 to 48 hours awake, and that contributed to my anxiety. It was like a pile-on effect!” ~Brett
“Beginning about three weeks after my third concussion, I started having problems with attention, anxiety and depression. There were a lot more emotional issues with this brain injury. I struggled a lot with the emotional aggravations. I started counseling, occupational therapy, physical therapy, speech therapy. I was doing that four times a week, which helped immensely. I think my recovery from that brain injury was much faster because of those resources.”
“I went through many counselors and I didn’t realize that you kind of have to find a good fit. But once I did, it was at times the only thing that got me through my week.” ~Lauren
“Had I known more about how my TBI could impact me long-term, it would have been beneficial to my emotional health because I wouldn’t get so down on myself when simple things that I do every day all of the sudden become difficult. Running into situations where I’m fine one day and not the next is very difficult. It’s hard to accept. If I had been a little more aware that this could be a long-term process, I would have been able to give myself a little more credit.”
(Update, 11 months after interview) “I describe my depression after my latest TBI like waves with high and low tides. Sometimes it is at low tide, but a high tide can hit really quickly. I’m learning to accept that I will have good and bad days, and I know I can get through them because tomorrow always comes. Now, the waves don’t hit as hard and there is a greater distance between the waves.” ~Brett
“A couple of months after my third concussion, I was in another bicycle accident. I didn’t hit my head, but it was so distressing that I had post-traumatic stress disorder afterwards. I struggled with that throughout the next year. If I was in a situation that triggered memories of my bike accident, or if I was in a big crowd, I would re-experience the trauma. I would walk into a room full of people and not be able to function. I describe it like a panic attack, where everything else shuts off. It’s not something you can talk yourself down from, and it’s not something that just goes away. It’s something you have to work through. And what that looked like for me was uncontrollable crying and extreme fear. I hadn’t experienced anything like that before, and it became very invasive in my everyday life. In addition to doing my other therapies, I started working with an art therapist who specialized in working with people with brain injuries. I worked a lot with her on the trauma response, which helped tremendously. It seemed to help my brain come out of this panic mode.” ~Lauren
Migraines and Headaches
Individuals with traumatic brain injuries (TBIs) often report having headaches and migraines. The pain caused by these conditions is at the very least distracting, and at worst disabling.
Although the severity and frequency may vary from person to person, migraines and headaches commonly interfere with daily activities, productivity, energy and focus.
The question becomes:
What are some techniques I can use to lessen the effects of headaches and migraines?
“One day I was shopping and running a lot of errands with a friend, and I ended up with a migraine for the entire rest of that week! Until that happened, I never would have known that these simple activities could cause such an outcome. Things that you might not regularly do can have big consequences.” ~Lauren
“I sleep if I have a migraine. For me, sleep is the only thing that’s going to take it away, and it may take up to 14 hours. I need to get to a dark, stimulus-free environment and just sleep.” ~Brandon
“Because your problems with a TBI are ever-changing, you might say to others, for example, ‘I have a really difficult time concentrating.’ But then you have to miss class or work because of a migraine that came on all of the sudden. And when you explain what’s happening to those same people, they’re like, ‘Oh, I didn’t know you had migraines, too!’’
“After my first severe TBI, when I was hospitalized and had to take time off work and live with my parents, I did have an increase in migraines. Then they went away for five years, until this latest TBI.”
(Update, 11 months after interview) “My migraines fluctuate in severity and frequency, but with time, they are getting farther apart. It is so important to have an open dialogue with your doctor in order to get the right medication that works for you! Sometimes you need to ask your doctor, ‘Is there another option for my migraines that might work better for me?’” ~Brett
Sensory Sensitivities and Visual Challenges
Imagine: You’re in a crowded shopping mall, in heavy traffic, or in a cluttered room with bright lights.
Your brain feels overloaded as it tries to process all of the incoming information. You feel the need to remove yourself from the chaos and get to a quieter, darker place.
For someone with a brain injury, overstimulating environments such as these may lead to emotional distress, exhaustion, headaches, migraines, confusion, visual abnormalities, or disorientation.
Sensory complications that frequently occur after a TBI can have a big impact on your life – personally, socially, professionally.
The question becomes:
What can I do to reduce feelings of being overwhelmed by things in my environment and that may be limiting my quality of life?
“My vestibular-ocular reflex was impaired, which was a big issue for me. I struggled doing basic everyday tasks just because my head felt like if I moved at all I would have this overload of nervous system input. Even when walking down a sidewalk I couldn’t really turn my head or look at anything. I couldn’t drive. I did a lot of physical therapy to help with the turning of my head.” ~Lauren
“I am instantly overstimulated—too much visually for my eyes to handle—and so they just “un-focus” and don’t want to move around a room. They can’t accept everything they are taking in. Brightness generally makes me feel like I should be wearing sunglasses all the time. When I’m studying or at work, I make sure my environment is dark, with as few visual distractions as possible, just so I can focus on the task at hand.”
“If I’m walking in a crowded area, I look down to avoid as much motion as I can. Movement, like looking at a busy street or seeing cars go by, makes it hard for my brain to take everything in.” ~ Brandon
(Update, 13 months after interview) “I still struggle greatly with reading comprehension and sensory overload, and I’ve found these difficulties are extraordinarily heightened with the addition of stress! However, I finally understand ways to help mitigate the effects of stress: a regular sleep routine, meditation, journaling, regular exercise/walking and healthy eating habits. These are all VERY important! Also, in the past year I’ve improved my level of self-awareness and am better at recognizing WHY I might be having an off day and HOW I can ease some of my symptoms. Previously, I felt like I was floundering. I didn’t understand why my body wasn’t responding well to things.” ~Lauren
“I do have a lot of issues when I’m driving. Mostly I wear sunglasses whenever I’m driving. I’m too tall to put down the sun visor because it cuts off the whole windshield. But I always make sure I’m driving with a hat because I can set it at different angles to shield the sun. Night driving is really hard with headlights coming at me. For me, the only thing to do is just not focus on the opposite side of the road. See it as much as I have to safely drive, but mainly focus on my half of the road.” ~Brandon
“I always use soft white bulbs at home instead of typical compact fluorescents because they are easier on my eyes. I almost constantly have my cell phone in night mode, which strips out blue light and brings down the brightness of the screen. Even now I keep my apartment as dark as possible. Wearing a ball cap can help with lighting issues, too.” ~Brandon
“Whenever possible, I invert the light background and the dark words on my computer, so the background is black and the words are white. That really reduces the brightness of the computer in general and really helps my reading.”
“I also use computer software that reads aloud and tracks the words it is saying, visually giving me a point to stay with instead of having to constantly keep track of where I am when reading. Not being able to read easily has been a challenge through school and work, with the visual stimulation and tracking it requires. Luckily, technology has helped that. For instance, if I’m handed a paper in class or at work, I can scan that in and have the computer read it to me.” ~Brandon