This is probably aimed more at family members/caregivers than the person with the brain injury, as speaking from personal experience it took me a number of years before I knew there was something wrong and was willing to admit it. It took even longer for me to get to a point where I understood that there was something I could do about it, and longer still to be able to implement what I had learned. Just because something seems simple to you, like ‘just rest!’, you should understand that you have a healthy functioning uninjured brain and are better able to process information. I used to lie about understanding things so that I wasn't treated differently. Be aware that just because they say they understand it doesn't mean that is the case!
After a head trauma it is very likely that you will suffer from some level of fatigue or tiredness called ‘cognitive fatigue’, this is different to the physical fatigue felt after exercise. I found it was always brought on by doing anything cognitive or using my brain; it could have been trying to work out anything mathematical or anything else that involved concentration. It’s an often overwhelming sensation of constantly feeling tired or weak, other symptoms include headaches, weak and aching muscles, slow reflexes, and being unable to concentrate or pay attention.
In the early days after my injury I seemed to be constantly exhausted, everything seemed to take so much effort and I couldn't seem to think straight. It’s similar to if you’ve ever been awake for more than 24 hours and tried to do anything mentally taxing like work out a bill - you just can’t do it (or at least can't be bothered to). All I wanted to do was go to sleep yet I wasn't able to switch off; I remember even if I was alone in a dark room, I still couldn't relax! I couldn't hold one thought so I used to think about lots of things for a few seconds at a time, like someone with the TV remote constantly channel hopping, my mind was chaotic. I was always so tired but didn't know what to do to make it better. I walked around like a zombie for years procrastinating, waiting and and just hoping it would just get better on its own. Know that this situation will improve and there are ways to help to speed up that process.
Immediately after my traumatic brain injury, particularly whilst still hospitalised, I was very confused and lived very much ‘in the moment’, I was too preoccupied with the structure of rehab and these new things like Occupational Therapy, Neuropsychology, Neuro Physiotherapy and, of course, friends and family visiting me to even think about my future. When I was discharged from hospital I went from that daily rehab structure put together by head injury experts to nothing. I was faced with filling whole days with really bad fatigue making me very prone to depression.
Now the fatigue may completely go away or it may not, depending on your injury. Every brain injury is unique and every person is unique, but it is likely that you will see a significant improvement in the months following the TBI. I, for example, have lived with a brain injury since May 2007, my fatigue has got a lot better but it is still very much a part of my daily life. I know others living with a brain injury that do not have fatigue but for example have really suffered physically and now walk with a limp. Over time I have learnt to control my fatigue, these are a couple of tips that I have picked up for managing fatigue after brain injury:
1) Don’t take advice from people who don’t know what they’re talking about
In the last decade I have been given ‘advice’ by a lot of different people about how I should be living my life inclusive of ‘I just need to get over it’, ‘fatigue is just a frame of mind’ to ‘I need to push myself more’. You might not be surprised to know that these people didn't know anything about head injury. TBI is a very specialist subject so the people to listen to are professionals who work in the area, and people who have a lot of personal experience - like those who have a close friend or family member with a TBI, or those with a TBI themselves... ahem!
2) Accept that you need to rest
At first I always thought that I was going to beat this brain injury and that I needed to resist the temptation to rest, man up and not give in to it. There is a small amount of truth in this but not in the first couple of years because your body is healing and needs a lot of rest, to resist resting is to resist healing.
3) Learn when to rest
Once I started listening to my body and resting when I felt the need, I found that I had got myself into a very unstructured rest pattern; I could fall asleep in the late afternoon, which meant I was awake until the early hours of the morning subsequently ruining my next day. When I eventually did get to sleep I would lie in until late in the day, which hindered my ability to fall asleep at a reasonable hour and the whole thing happened again. It took me a while to break free from this cycle of insomnia; to avoid this I would recommend getting into a routine because doing things at the same time each day will help to get structure back in to your life. All my life I had structure from school or work, I got up, ate meals, got home and went to bed all at the same time and this structured way of living was normal to me. When I was discharged from hospital I rarely had to be anywhere at any particular time with the exception of hospital appointments. Structure exists for a reason, it is the most productive way of getting things done, without it, life descends into chaos. Start to plan rests into your day and time them, not having any more than 40 minutes at a time. I used to have 40 minutes at about lunch time and two 20 minute power naps at 10am and 4pm. Try not to have your last nap of the day too late, I found resting any later than 4pm would have an effect on me getting to sleep at night.
4) Learn how to rest
One of the pieces of advice that I was given during occupational therapy was to take a 40 minute rest, so I would set my alarm for 40 minutes and close my eyes. So much was going through my head that when the alarm did go off I felt not only unrested but I sometimes felt more tired than I did before setting my alarm. This is because I still had very poor concentration, I had so many different thoughts going through my head, yet I couldn't keep my attention on any of them for more than a few seconds. Eventually I would recommend attending a class on mindfulness, where you will learn to control your mind, focus on your breathing etc. Before using mindfulness, other great tools I used to use were ‘Guided Meditations’. It is somebody speaking and telling you how to relax, you just listen to their voice rather than your own chaotic thoughts. It’s a much more productive way of spending your rest time than listening to your own anxieties! You will be able to download guided meditations or do what I used to do and play them on Youtube. Try it it’s free!
5) Be careful with caffeine
Caffeine is a stimulant but it will not take away the effects of fatigue from a head injury, only rest will do that! Caffeine will just prevent you from being able to switch off and get the rest that you need. In the past I have used it carelessly making it a hindrance rather than a help. I have been lying awake in bed at 4am unsure why I wasn't dropping off to sleep, and I may never remember, or it may come back to me that I had a cup of coffee in the afternoon. Caffeine can affect the way you sleep at night, particularly if you're a light sleeper like me. It is recommended for regular people without a head injury not to consume caffeine after 2pm, I have a rule to not drink coffee after 11am using it only as a kickstart to the day. Not only coffee contains caffeine, many soft drinks such as Coca Cola do as well so be sure to check the label before consumption.
6) Try adding a little nap for an extra boost
When I have to leave for something at a certain time I like to get ready ten or twenty minutes earlier than I need to and before I leave I lie down on my bed and close my eyes for those ten or twenty minutes making me extra bright as I walk out of the door. Caffeine takes 20 minutes to take effect so a trick I use often in the morning is to get ready 20 minutes early, drink a cup of coffee and get back in bed for those 20 minutes. This enables me to walk out of the door just as the caffeine is taking effect (only do this in the morning).
7) Prepare things wherever you can
Now that you have less energy than you did before, it makes sense to conserve it wherever you can. I like things to run as smoothly as they can, especially in the morning, so I like to prepare what I am going to wear the next day. This means I am not running around looking for clothes only to find they are not washed etc. I prepare my breakfast the night before - looking for things is wasted energy so eliminate this wherever you can. Prepare whatever you can prepare in advance for an easier life.
8) Concentration is key
Your ability to concentrate and pay attention will have been affected but luckily this can be improved by doing exercises. Concentration can be trained to get stronger like a muscle in a gym. There are many different concentration exercises available. For example you can simply search in Google for concentration exercises, try to do some every day and share what you are doing with a member of your family or a friend so they can remind you and help keep you on track.
This kind of approach never worked for me because I’ve never been the type of person that was able to stick to a plan, just as the way to get fit isn't to go from a sedentary lifestyle to running 5 miles per day, especially if you hate running as you simply won't do it! You need to find a way of exercising that you enjoy and will stick to, almost tricking yourself into staying active. The same rule applies with concentration. For instance, do you like reading? The way to get good at something is to practice and whilst you are reading you are practicing concentrating by focusing on the book you are reading. Going back to the fitness analogy, you do not start by running 10k, you start with 1k and as your tolerance increases you increase your distance. You won't be able to keep your focus on a book for that long, so you read a page one day, two the next and so on until you can read a chapter at a time. If you're like me and have visual difficulties, then try audiobooks and start with a couple of minutes and build up your time.
My ability to concentrate is not as good as my friends’, I have difficulty following the plot of a film even in a cinema where there are few distractions. I have issues with recognising different faces, if there are 3 women with blonde hair in the film its very unlikely I will remember which is which and who did what earlier in the film. My ability to concentrate hasn't returned to what it once was but it has improved drastically!
You will be surprised how improving your concentration will have a knock on effect to improve other areas, for example you could see improvement in your memory, conversation, ability to follow a story and your ability to rest. Improving my concentration is by far the best tip I can give you in the struggle against the effects of traumatic brain injury.
9) Don't ever give up
Recovery from a head injury is a long process and it is guaranteed that you will have good days and bad days. There have been times that I have been very confident of making a full recovery and times that I have been down in the dumps, wondering why this has happened, thinking my life is over and wondering what is the point? I’ve found that I have to accept that I will have these bad days, the only way to guarantee to make things worse for yourself is to give up! Always remember that it’s a marathon not a sprint, no matter how bad your situation you can make it worse by giving up. Don't waste energy by regretting what you did in the past, there’s nothing that you can do about it so it’s wasted energy and you do not have energy to waste! Plan what you're going to do better tomorrow, look forward not back and never quit, you’re better than that!
Watch the video below for an audio recording of "Managing and coping with fatigue after brain injury"