There is a saying, ‘no two brain injuries are alike.’
This is true, every acquired brain injury is indeed different. But these horrid ABIs share some commonalities, and one in particular is fatigue.
Similar to brain injury, fatigue is invisible. I find it to be hiding in the corners of my brain, lurking in the shadows. It seems to be ready to jump into action at any given time of the day. A nap, or extra rest, does not cure it.
extreme drowsiness, typically resulting from mental or physical exertion or illness.
I’m not sure if people understand the effect fatigue has on someone living with a brain injury. I find it comes in waves and at various levels of low, mild and extreme.
It is a silent paralyzer, and never a pleasant experience. It is disorienting. One could almost wonder how much worse it possibly get?
Remember last summer? 2016 was the hottest year on record. This summer we have some relief, but the heat and humidity persist on most days, and they are a lethal instigator of fatigue.
While I’m not sure what is the best way to beat this devastating duo of fatigue and the heat wave, I know there must be a way to deal with it.
Perhaps it is inner strength, or knowing how to slow yourself down and breathe. Maybe the answer is to go for a nice cool swim or take a cold shower. Regardless of how staggering it can get, like with many things, I will get through it and survive.
I’m sure any of us who come up against these monsters can do the same. (And remember, fall is just around the corner.)
But sometimes I wonder, which is harder? Dealing with the fatigue or dealing with the fact that others don’t understand why I’m dealing with the fatigue. Maybe it is me not always telling people that I’m trying to deal with the fatigue.
Wow, that’s confusing, but that is also brain injury.
Mark’s passion to lend a helping hand, offer advice and give back has developed into a moral and social responsibility with the goal of sharing, inspiring and growing – for others as well as himself. His experience as a survivor, caregiver, mentor and writer has led to his credibility as an ABI Advocate and author of his life’s story, Challenging Barriers & Walking the Path. Follow him on Twitter @Mark_Koning or go to www.markkoning.com
One of the many things we lose during recovery from an ABI is structure in our day-to-day routines.
While rehab and specialist appointments may maintain a facsimile of structure to your day or week, what are you doing with the rest of your time? Have you fallen into a routine of sleeping the morning away, followed by an afternoon marathon of talk shows, soaps and game shows? Does your wardrobe consist of pajamas or sweat pants? By supper time do you start thinking about all the ‘things’ you should have done – only now you are beyond tired, and you remember you didn’t really eat anything (does a chocolate and left over pizza count?), and you’re now counting down the time until you move from your sofa to your bed – only to start the cycle again tomorrow? Unless of course there is a medical appointment you need to attend.
This type of day I call unplanned structure, in the early days of recovery you went from bed to medical/rehab appointments and back to bed, because that’s all your body and brain could handle. Over time, this became unplanned structure, as it was easier to do nothing than to think and make a decision about how you were going to carry out an activity, which may take more planning now than before you acquired a brain injury.
Know, I’m not judging. I‘ve lived this, but I’m here to let you in on a little secret – planned structure is key to getting back to adding more fun and enjoyment into your day.
For many people the word structure can conjure up visons of rigidity, being controlled, or being stuck in a boring routine. But structure can be a very powerful tool to help you get back to functioning on a regular basis and enjoying life. When you have structure in your life you know ‘what’s next’, which enables you to get on with your day. As ABI-survivors we can use up valuable energy trying to figure out what to do next. We might not do anything because we can’t decide or figure out what to do.
In the early years of recovery from ABI, I too was against structure, just ask my rehab girl Catherine. My reasoning was that I couldn’t predict what my energy level was going to be on any given day, so why plan anything? This left me doing nothing most of the time.
I also wanted to feel like I had control over my own day. Boy, was I wrong! When I finally gave planning structure a try – with the caveat that it was OK to re-schedule an activity if I didn’t have the energy for it (without guilt, or feeling like a failure) – it was such a liberating feeling!
Planned structure became my ticket to freedom, independence and a sense of accomplishment. Knowing what came next in my day helped reduce my daily struggle with anxiety and stress. I made sure there was always built in rest time between activities, and the more I repeated an activity on a regular basis the more it became a habit. My brain started to automatically know ‘what’s next’, and before I knew it I was doing my morning grooming without having to stop and think about it.
I’m not going to sugar coat it – it takes time, and some things will continue to need to be written down (that is a post for another day) but, know that each small step (no matter how trivial and small it may seem) will get you to where you want to be, living life to its fullest no matter what your new abilities may be.
When our food, exercise and sleep patterns are consistent our body and brain function better. This makes it possible to enjoy not only the tasks we need to do but to enjoy activities we like and try new activities too.
Benefits of structure
You know ‘what’s next’ and don’t waste energy thinking about what to do next
You habituate a new task or behavior
Automates activities in your day
You feel more in control being able to enjoy your day and your life
Eight tipsthat helped me add planned structure into my day that included activities to make my day and life more enjoyable:
A regular wake up time
Morning rituals to prepare for the day ahead (showering, dressing, breakfast etc.)
Evening rituals to prepare your mind and body for rest (unplug from computers, television 1-2 hours before your bedtime; read a book, have a bath, meditate/pray, etc.)
A regular bedtime
NOTE: there will be times where you will need to add your daily structured planned activities around your medical / rehab needs, and there will be times that you will be able to add your medical rehab appointments around the things you enjoy in life. With patience and time you will find balance between the two – this is when the magic of planned structure happens.
Allow for flexibility, especially on days you find your energy supply low
Its ok to add/remove activities as your likes change
Seek the help of a rehab team member, friend/family member, or psychologist in creating your daily structured plan if you are not sure how to get started.
Today, I have more enjoyment in my days and life in general because; I have created a daily structured plan that works for me. I encourage you to give adding structure to your day a chance. And let’s not tell Catherine that she was right about structure, that will be our little secret. ☺
Celia is an ABI survivor who is dedicated to helping others move forward in their journey and live the life they dream of. She is the founder of the internationally read blog High Heeled Life – inspiration for living a luxurious and balanced life; featured author in Soulful Relationships part of the best-selling series Adventures in Manifesting; a Peer Mentor with BIST; a regular speaker for Canadian Blood Services – Speakers Bureau; Self-care advocate; Lifestyle writer/blogger. In 2016 Celia launched the website Resilientista to inspire women to put themselves in their day, practice self-care on the daily and live their version of a High Heeled Life. Learn more about Celia and be inspired: visit http://www.HighHeeledLife.com or http://www.Resilientista.com
We’ve all seen the ads and heard the hype – such and such an energy drink will make you fly and perform other miracles. Why sleep when you can have boundless energy to do everything you enjoy without ever feeling tired?
Beverages used to promote energy and well-being have been around for centuries. Inhabitants of pre-Columbian America drank a dark brew of toasted holly leaves and bark. According to researchers, the drink had a high caffeine content, so it would seem that even early North Americans needed that extra boost before heading off to a hunt or into battle.
Coca-Cola, first launched in 1886, could be considered the first modern-day energy drink as it contained both caffeine and another certain substance – cocaine. The drink’s name was derived from the coca plant from which cocaine is cultivated and the kola nut, the source of caffeine. John Styth Pemberton, a pharmacist and founder of the drink, initially used five ounces of coca leaf per gallon of syrup, but the amount was later greatly reduced. Cocaine was removed altogether in 1903, though in 1988 the New York Times reported Coca-Cola was still using non-cocaine containing extracts from coca leaves in its concoction.
Experiments with energy drinks were conducted as early as the 1920s, but it wasn’t until the 1980s that the beverages began to see a huge increase in popularity. From 2008 until 2012 the energy drink market grew 60 per cent, totalling $12.5 billion in U.S. sales by 2012.
Teenagers are among the most devoted consumers of energy drinks, a demographic that would be naturally drawn to a beverage, which promises increased energy. Nevertheless, despite all the hype, energy drinks are more than they appear to be. According to a recent study conducted at the University of Toronto, consumption of these highly caffeinated beverages may lead to more erratic physical behaviour that in turn may lead to a greater risk of physical trauma.
Professor Gabriela Ilie, co-author of the study, explained why youth are an increased risk of acquiring a brain injury.
“The teenage years are very vulnerable years. Our brains are still developing into our 20s and 30s,” Ilie told Yahoo Health. “And a serious knock to the noggin can have consequences that extend well beyond being benched for a few games: poor academic performance, substance abuse, suicide, and violent behavior have all been linked to traumatic brain injury.”
The study involved 10,000 young people aged 11 to 20 who took part in a survey focusing on use of alcohol and energy drink consumption along with the frequency of brain injury.Results indicated that those who had consumed at least one of the energy-boosting drinks during the previous year were twice as likely to have suffered a brain injury compared to non-drinkers. Worse, those who were regular users – five or more drinks a week – were nearly seven times as likely to have experienced trauma to the brain. Not surprisingly, an even greater trend was observed among teens who reported mixing energy drinks with alcohol.
“With some energy drinks packing as much caffeine as two shots of espresso, along with other stimulants like taurine and guarana, feeling jittery is almost inevitable,” Ilie told Yahoo Health. “That can predispose you to more accidents, because now you’re so hyper, you can’t focus and pay attention to what you’re doing.”
According to Dr. Michael Cusimano, the other co-author of the study and a neurosurgeon at St. Michael’s Hospital in Toronto, the high level of caffeine found in energy drinks can alter the chemical state of the body, which can slow down the recovery process for ABI sufferers. This is particularly concerning for teens whose brains are still developing. Studies have shown that young people living with the effects of brain injury might be more inclined to consume energy drinks as a way of coping with the injury, not realizing the harm the ingredients may be doing.
Even more alarming is the trend of mixing energy drinks with alcohol.
“You’re intoxicated but wide awake, so you might be more prone to doing crazy things that if you weren’t intoxicated you would never consider doing,” Ilie told Yahoo Health.
Ilie suggests that parents monitor their kids’ consumption more closely and try to determine the need for such beverages; is it to artificially increase athletic ability before a big game, or to stay awake after an all-night study or texting session? Teens also have a responsibility to investigate the health consequences energy drinks may lead to. They have to ask: “What am I putting into my body, and is it worth it? Just because the beverages are legal and easily attainable doesn’t make them beneficial in the long run.
Clearly, more investigation needs to be done. Up to now, researchers have found only an indirect association between energy drinks and brain injuries. As yet, there is no substantial proof that the consumption of energy drinks will automatically lead to brain trauma. It has more to do with the changes in a person’s physical state that the drinks produce. It may well be that those who consume energy drinks are more inclined to take risks and more disposed to physical injury. In the end, adequate sleep and a healthy diet are much healthier and safer ways of maintaining energy levels.
How can we survive, and perhaps even find happiness after experiencing loss or trauma ?This is a question that has fascinated me ever since surviving my traumatic brain injury almost four years ago.
I reviewed the writings of Martin Seligman, the leading authority in the fields of positive psychology, the scientific study of what makes life most worth living. [We also talked about positive psychology at our August community meeting.] It is a call for psychological science and practice to be as concerned with strength as it is with weakness; as interested in building the best things in life as in repairing the worst; and as concerned with making the lives of normal people fulfilling as with healing pathology.
Seligman identifies three types of happiness: the pleasant life, the good life, and the meaningful life. The pleasant life is amassing as many pleasurable experiences as you can and learning to savour those moments by practicing mindfulness techniques. The way psychologists help people experience the pleasant life is to have them create their perfect day, and using the techniques of mindfulness, savour those activities.
What would your perfect day look like? Mine would include an early morning yoga session, followed by a breakfast of fresh fruit, yogurt, and granola, and a latte (prepared by someone else, of course!); an ocean, a beach, and a good book; a lunch of fresh fish and greens by the seaside; my requisite afternoon nap; followed by a hike; and, getting all dressed up for a dinner of pasta and a glass of red wine.
The good life is experienced when we experience flow, when we are fully engaged in some activity that so engrosses us that time stops. The way we can increase flow, or the good life, is to identify our signature strengths (you can take the test on at www.authentichappiness.org) and re-craft our life in the arenas of work, love, family, friends, and fun to make use of those signature strengths.
Prior to my TBI, I had managed to craft a professional life as a researcher where I made good use of one of my signature strengthes – the love of learning. Often, when I was in the midst of analyzing the data, time literally stood still for me, I would look up from my screen and the hours had flown by.
My second signature strength is a deep appreciation of beauty. When I look around at my home, in my closet, at my dinner table when I’m entertaining, that signature strength is in full display. When I reflect back on how I raised my two daughters I now see how I incorporated these two signature strengths in their upbringing, we were always discussing new ideas, new research, traveling, and visiting art galleries and museums. I derived great happiness from these activities and I think, in some small way, I cultivated those strengths in my children.
The meaningful life is achieved when we identify our signature strengths and use them for the betterment of others. When I’m reading books on psychology, neuroscience, and happiness, time literally stops for me – I’m so engaged in the activity. I have been extremely fortunate to have found a way to take this signature strength to increase the good life and hopefully to some small degree, the meaningful life post TBI. By sharing my learnings about TBI and how the advances in neuroscience may offer hope to survivors of TBI, I have found some meaning from my TBI, and this increases my happiness. For this I thank the Brain Injury Blog Toronto and its readers!
Other TBI survivors have used their signature strengths to become peer mentors, run workshops, organize social activities, volunteer on the Board of Directors, and so much more.
Do we achieve the same life satisfaction from all three happy lives? Martin Seligman and his team have conducted research in 15 replications involving thousands of people — to determine to what extent the pursuit of pleasure, the pursuit of positive emotion, the pleasant life, the pursuit of engagement, time stopping for you, and the pursuit of meaning contribute to life satisfaction.
It turns out the pursuit of pleasure on its own, has almost no contribution to life satisfaction. The pursuit of meaning has the strongest impact on life satisfaction, and the pursuit of engagement is also very strong. The pursuit of pleasure positively impacts life satisfaction when you have both engagement and you have meaning.
Which is to say, the full life is one in which we have all three. So, identify your signature strengths and then use them to enhance the engaged life and the meaningful life, and don’t forget a dose of pleasure! Wishing you much happiness!
Since her TBI in 2011, Sophia has educated herself about TBI. She is interested in making research into TBI accessible to other survivors.
After sustaining a traumatic brain injury (TBI) in 2011 I was blessed to be referred to a wonderful cccupational therapist who helped me to firstly understand what had happened to me, secondly, helped me to develop strategies to deal with my deficits, and finally helped me to accept my new normal.
We focused on three areas during my therapy: cognitive, emotional, and physical. Recently I read a scientific article published in Current Opinion in Behavioral Sciences which outlines the extensive neuroscience literature that supports the positive effects of physical activity for improved cognitive performance and brain health.
Experiments with animals have shown that increased physical exercise leads several benefits to the brain, including:
These findings have been observed across the lifespan and in a multitude of species, including rodents, dogs, and monkeys. The findings in animal models provided the basis for human studies of physical activity, fitness, and exercise and its impact on brain function. In a
meta-analysis (a quantitative statistical analysis of several separate but similar experiments or studies in order to test the pooled data for statistical significance) of eighteen human randomized controlled trials published in 2013 by Colcombe and Kramer, a moderate effect size between exercise and cognition was reported.
Specifically, the meta-analysis revealed a clear and significant positive effect of aerobic exercise training on cognitive function. As discussed in an earlier post, TBI often leads to deficits in cognition – attention, memory, thought, behaviour and emotion.
Furthermore, exercise training had both general and selective effects on cognitive function. Although exercise effects were observed across a variety of cognitive tasks, the effects were largest for tasks that engage the central executive network, including planning, problem solving, cognitive flexibility, and working memory. Lastly, the meta-analysis revealed that aerobic exercise training combined with strength and flexibility training had a greater positive effect on cognition compared to exercise training programs that included only aerobic components.
More recently, human studies have begun to include measures of brain function and structure along with behavioural measures of cognition. These studies have reported that relatively brief fitness programs result in increased brain volume in the hippocampus, benefits in the striatum, and increases in the integrity of white matter tracts. Additionally, these fitness programs enhance patterns of brain activation, including measures of functional connectivity of frontal and parietal brain regions, suggesting more efficient activity within the central executive network.
While the majority of experiments have focused on older adults, more recent studies have reported similar cognitive and brain benefits of exercise and physical activity in children, and young adults. Collectively, these studies have demonstrated that physical activity and aerobic fitness benefit brain function and cognitive performance across a variety of aspects of cognitive control, including attention and inhibition, working memory, mental flexibility, and action monitoring/error detection, as well as hippocampaldependent memory.
Despite the global benefits of physical activity and the potential to improve cognitive performance and brain health, remarkably little research has evaluated the effects of physical activity on cognition following TBI.
Consistent with the literature in healthy adults, evidence indicates that physical activity in a four-week aerobic fitness intervention produced improvement in executive functions following TBI.
The physical fitness interventions for TBI can be personalized for the patient, selecting from a variety of fitness activities (e.g., aerobic, strength, and flexibility training) that accommodate the patient’s abilities and functional goals.
Mine include hiking, biking, yoga, swimming, snowshoeing, and strength training. Activities that I had always enjoyed and continue to enjoy which benefit both my body and my brain!
Since her TBI in 2011, Sophia has educated herself about TBI. She is interested in making research into TBI accessible to other survivors.
In May 2011, I sustained a traumatic brain injury (TBI). My TBI left me with a number of physical,cognitive, and emotional deficits. Working with an occupational therapist, we were able to identify these deficits develop a number of strategies to help me compensate for them. I will be eternally grateful for the help I received from a compassionate and eminently capable occupational therapist.
The one deficit that I have found the most difficult to accept is my need for more sleep. My two-hour afternoon rest period, actually, a nap, is sacrosanct. I am unable to function without it. This nap is in addition to a good nine hours of sleep a night, much more than I needed before my injury. My need for more sleep has made a huge dent in the number of productive hours I have in a day.
Whether the TBI is mild or severe, at least 25 per cent of patients experience some disturbance in sleep and/or level of daytime arousal following their injury. These symptoms can impact recovery and contribute to disability.
Most doctors will tell you that increased need for sleep arises because it takes time for the brain to heal; even a mild concussion can disrupt neural fibres and that mental activity may take much more effort following such an injury.
I recently came across an article by Dr.Barbara Schildkrout where she discusses new research in pleiosomnia, the need for an unusual amount of sleep in a 24- hour period. This research may point to new treatment approaches for this common symptom of TBI.
Schildkrout discusses the findings of two research studies which draw attention to the fact that injury of the hypothalamus is common in TBI. The posterior nucleus of the hypothalamus which contains histaminergic neurons is most affected by injury. Histaminergic neurons are part of a the body’s system which control wakefulness. The researchers suggest that a consequence of shearing forces at the point where the hypothalamus and the midbrain meet during head trauma is the loss of histaminergic neurons.
The research also identifies a less substantial but still significant loss of hypocretin/orexin neurons and melanin-concentrating hormone (MCH) cells in the hypothalamus. Scientists know that these types of neurons and hormones are involved in regulating arousal and sleep. In individuals with narcolepsy (frequent and excessive sleepiness) the hypocretin/orexin neurons are deficient or absent. MCH neurons are involved in both REM and non-REM sleep and are thought to promote sleep
The authors suggest that their findings point to a new approach for treating post-TBI patients who experience the need for extra sleep. Drugs which increase histamine signalling to the brain may prove helpful in the management of excessive sleepiness in TBI survivors. One such drug, Pitolisant, is being tried with some success in patients with narcolepsy and might prove helpful to TBI survivors, who like me, suffer from excessive sleepiness.
In my life before my TBI, I was a researcher. I had a passion for conducting both primary and secondary research and then communicating the results of that research in an accessible way. I hope that this is what I’ve done here, and I hope to do more of it in the future. Now, it’s time for my nap!
Since her TBI in 2011 Sophia has educated herself about TBI. She is interested in making research into TBI accessible to other survivors.