Holidays

Holidays are supposed to be fun, and if anyone deserves a holiday, it’s someone who has had a brain injury. I thought I’d focus on the how to still have fun aspect of mild traumatic brain injury rehab on this chilly December night. As usual, it’s all in the planning.

Firstly, try to keep each day over the holidays as close as possible to your typical schedule. Change is hard work, it requires more decision making, more reacting to stimuli, and that is what will wear you out. Try to keep this in mind throughout the holidays:

Routine is easier, therefore, routine is good.

Following a similar sleep, meal and exercise routine each day means you aren’t constantly making choices and decisions, you just follow your planned itinerary. If you want to add an event to your day, make it a priority, but replace another activity (like the doing the laundry, it’ll wait.) Go to the party, it’s important to make time for some fun.

The key to maintaining your energy level through the holidays is in the acknowledgment that your energy bank is not fully stocked right now. If you find that you need a three-hour nap and you can still sleep through the night,  then you’re doing too much. Take it a little slower. You can still go to parties, just don’t be the last to leave.

The secret to having a social life in the holiday season is to participate in small doses.  Deciding upon the length of time you can allow yourself to have these doses of fun is in your ability to monitor and know your limits. Think of this as a diet-you can sample the holiday treats, but if you eat them all, you’ll regret it.  I try (whenever I can remember) to use the five minute break rule to help me monitor my limits:

The five minute break: Five minutes is not enough time to recover from the excitement of a noisy Christmas party, but it is enough time to do a little check-in, to see how you’re feeling. If you step aside (outside if possible) for a few minutes, you’ll at least have a chance to monitor your symptoms. Headaches are sneaky: when you’re having fun, endorphins do a great job of distraction, but as soon as you step away from a high-stimulus environment, you’ll have a much more accurate perception of your symptoms. If you take a little breather and you think you can last a little longer, that’s fine, but waiting until your symptoms are noticeable above the stimuli of a noisy party is a bad idea. If you start to feel light-headed or your head hurts, you’ve already outstayed your welcome, and it’s time to get home. If you do listen to your body’s indications of fatigue in a five-minute break, you may still get the headache, but at least you’ll be on your way home, taking good care of yourself, and knowing that you aren’t making the next day a less-than good day. It’s not admitting defeat, it’s respecting your brain’s limitations, and that is absolutely essential in brain rehab. Social activities are an important aspect of brain injury recovery. It will take some adjustment, but if brain rehab is your full-time job right now, then you’re allowed to have a holiday too.

Because I’m feeling particularly organized today, I’ll give you a summary to add to your Christmas to-do list:

  1. Stick to your routines. Sleep, meals and daily exercise are top priorities.
  2. Replace activities with holiday fun, don’t add the fun to an already full day.
  3. A five minute quiet check in on your symptoms can save you a whole lot of pain and allow you to join in on future fun. christmasTonight’s picture: I took this photo downtown at one of the big hotels at Christmas time a few years ago. It was a little excessive, but holidays are a break from the rules and looking back on this picture is a nice reminder of the importance of taking some time to have some fun.

In Limbo

There is a very unfortunate common experience among people who have had a traumatic brain injury, simply put: being in limbo. I suppose I could have used the term purgatory to capture the true essence of this experience, but that might imply some sense of fault or guilt. Head injuries are accidents; you can’t turn back time by thinking, if only I hadn’t been there at that moment, but, you were, and the injury happened. The state of limbo that I have heard so many people describe in various ways is the waiting period during which you just have to sit it out and see what’s going to happen with your brain. This might also be known as hoping for the best.

The consistent and best advice given from the ER department after having a head injury is to go home and rest. This is not, however, a very specific treatment plan, so this is the starting point of your limbo state. Not knowing what is wrong with you can cause a significant degree of frustration, anxiety, stress, anger, you name the emotion, they’ll all come into play as you wait out the getting better period. The problem is, as I mentioned yesterday, everyone’s experience to head trauma is unique. The only consistent treatment that will help is rest.

Head injury limbo begins with lots of sleep. This sleep is not like a refreshing Sunday morning catchup that you might have normally had after a busy week, it’s feels more like hibernation. These 12-hour stretches of brain rest are your first treatment after a head injury. Ideally, this may take a few days, even a month or more of the most severe need to sleep you have ever experienced. Eventually, the injured brain is able to begin to function on a more typical amount of sleep. This is a very pivotal point in the limbo state- if you want to move out of limbo, don’t make any sudden moves. This means, make very gradual changes in your activity levels. Don’t think you can bounce back to ‘normal’ just because your fatigue seems to be lessening. If you do, you will slip right back into the extreme fatigue and head injury symptoms again. Again, this is such an individual experience, there isn’t going to be one prescribed solution for everyone, so it is up to the individual to be aware of signs of fatigue and respect the body’s need to gradually heal.

I have described the healing brain in earlier posts as a collection of replacement brain cells, recruited to replace the broken ones. When I say new, think of young, like toddler-aged. If you have ever spent any time with a toddler and observed their fascination with their emerging world, followed by the ability/need to fall asleep in a car seat, or melt down in a temper tantrum, you may see a parallel in the state of a brain that is healing after a severe injury. We know that a damaged brain can heal in that new neural pathways can develop, new cells can take over for dying ones. But if you expect an injured brain to take on the full responsibilities of an adult, it would be similar to asking a toddler to take over your household. Even a genius child would be forgiven for a few mistakes and meltdowns. Respect your healing brain’s need to figure things out, and allow it to make new connections and learn, just as you would with a small child. Being in limbo is not permanent, but I guarantee that it will last longer if you forget that your brain needs time to engage the new cells and pathways. Give that toddler time to figure things out, as long as it takes.

I have no intention here of belittling the state of limbo that comes with a lack of direction and definitive answers about the healing process after a traumatic brain injury. I mentioned the alternative term of purgatory because unrelenting pain, confusion and having nowhere to turn for help is just that. I write this blog as someone who has likely shared some of the experiences that you may be enduring right now, and I wish I had easy solutions for you, but I don’t. I write here because I can say that the best thing you can do for yourself is to give yourself time. Head injuries are completely invisible. To the outside world, you may look exactly the same, but inside your head, everything is different. Changes in structure and chemistry are going to affect all cells. It’s going to take some time and a lot of energy to figure out how to work with your new brain cells, but welcome the new recruits and give them a chance to take on their responsibilities.

I’ll leave off today with a little artistic inspiration. I have started to paint recently-it’s quiet so it doesn’t hurt, as long as I don’t focus on it too long. I have a long way to go, but I like this part of a field of flowers I made recently. My auditory channels were most affected by my head injury, so I’m spending more time working on my visual strengths, and I really enjoy it. I urge anyone with a brain injury to give yourself some time to explore new hobbies, nurture those new brain cells, and see where they may take you.

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Location, location…

It’s all about location, especially when you’re looking at head injuries. There are many common signs of head injury, but that doesn’t mean that everyone with a head injury will have the same problems.brain-regionsThe more I talk to people who have had some kind of head trauma, the more I realize how unique each person’s experience is. An injury to the top of the head is nothing like damage to the front of the brain. Likewise, a person in a car accident does not necessarily have more significant injuries to the brain than a person who has been thrown off a bicycle.  Every head injury is unique, depending upon a whole list of factors that led up to the precise location and timing of the accident. I think any generalizations or assumptions about head injury based upon common knowledge of concussion can get in the way of individual treatment. If you have had a concussion, and you have enough energy to read here without causing yourself any pain, I hope you’ll find this interesting. If your head hurts though, turn off your computer and do something else. This will still be here tomorrow.

I’ve talked to people who have dramatic changes to their emotional stability, people who have lost their sense of smell, others have lost their sense of direction. For some people, the unrelenting headaches take over their lives, and other people blow up in anger or burst into tears over the slightest stress.  All of these signs are in relation to the areas of the brain affected by trauma. In order to help yourself through brain rehabilitation, it’s first going to be important to recognize the effect of your injury on your own brain. The brain itself doesn’t feel any pain, so it’s not like a doctor can tap around on different areas of the brain to see where it hurts. They also can’t go inside and fix any broken parts. The true test of brain injury is in its function, and this is something that you can learn to do yourself.

In my own experience, I found that this was something I needed help with at first.  It’s very difficult to recognize dysfunction in your own brain when you have a brain injury. Setting aside any pride that might interfere with your ability to accept help, ask someone you trust to help you recognize signs of problems in your brain. Keeping a journal may be helpful (or it may drive you crazy) but there will be some consistency in the reactions your brain has to certain tasks. If you can start to make note of the problems you are having and the circumstances in which they happen, you will be making the first step toward independence in your own brain rehabilitation.

Take some time at the end of each day to reflect on the problems you encounter and look for connections. (Do this after eating, you’ll need the fuel.) What were you trying to do when the problems happened? This is a very challenging task on a tired, injured brain, so it’s probably easier to discuss this with someone who is close to you. In my house, the close calls I had with nearly burning the kitchen down were some pretty good warning signs. I love to cook, so I had to take a new approach. By eliminating multi-tasking, I can cook again. This was initially a huge frustration for me, I had to take my own advice quite literally but as soon as I started to have some success with my new approach, I could work around the dysfunction.

The second factor to consider in function is fatigue. You may find you can overcome some of your dysfunction by pushing yourself but this is a really bad idea. Exercising your brain through learning is good, but pushing yourself through pain to build up endurance has a reverse effect with brain injuries. The nervous system reacts to harmful stimulus in a protective way. You may not be able to recognize the stress you are causing to your brain when you push yourself to function ‘normally’ for you, but your nervous system does, and it will become increasingly sensitive to these triggers. That’s how symptoms get worse, instead of better. If, when you are taking a moment to sit down with someone who spends a lot of time with you and you feel like things are getting worse instead of better, then that is a sign that you are not aware of the demands you are putting on your injured brain.

So, today’s advice is to take stock and find ways around your injury. Parts of your brain may not be working, but other parts can take over if you let them. If you live on your own, you may not have anyone observing the day to day mess-ups, but you can take the time to be honest with yourself and look for patterns of fatigue, mistakes, and physical symptoms. You can build up endurance, but it has to be incredibly slow.  The best way to build up function again is through very gradual increases in activities that are difficult for you. In the meantime, find ways to work around your brain dysfunction, avoiding the broken pieces, and you’ll be not only more highly functioning, you’ll be happier.

 

 

Relativity

I have my own theory of relativity, with respect to learning, and I think I can use it to explain what you need to do to move forward from a head injury.  It might take me a bit to get to my point, but if you’re interested, read on.

Here is a theory of relativity in relation to learning after brain injury, according to someone with an injured brain:

If that title makes your head spin, then you’re the right audience for today’s post.

I described the treadmill of work in my last post, that treadmill that is constantly on and really hard to step back on after an injury. Well, we all know the feeling of going to work with a bit of a cold or fever when you just have no other choice. You show up and do your best, but you really would have been more effective staying home. A few days later, you’ll start to feel like yourself again, and somehow you begin to catch up and don’t even notice that the treadmill is moving.  That’s the relative nature of work, and the normal process of recovery from being sick. No matter how much you might want it to, an injured brain doesn’t work this way. A healing brain has to figure out how to do all the things that used to get done pre-injury, by bringing in replacements for injured brain cells. Luckily, we have billions of neurons to take over for damaged ones, but all of the things that you used to do now have to be learned, just as if they are novel experiences. (As far as the replacement neurons are concerned, these are new experiences!) New connections have to be built to replace the functions of the injured neurons. Just as it took you a while to learn how to walk, talk and ride a bike, it will take you some time to learn to do what you used to do. It took me a year to get to this point in my own understanding of brain injuries. So, if you have had a head injury and you’re hanging on to the idea of feeling normal again, let that go and focus on new learning.

The secret to new learning is timing. I learned this years ago,teaching math. Anything presented either too fast or too slow makes learning more difficult. You can’t control the rate at which you learn, but you can be more effective as a learner by controlling the timing of incoming stimulus. This is where my thoughts on relativity come into play. Having a brain injury causes you to be much more aware of the rate at which things happen.  Mostly because everything happens too fast for an injured brain to process easily. The body’s hyper sensitivity can cause pain, dizziness and confusion when you’re overwhelmed by incoming information (stimuli.) These reactions are all meant to protect the brain from the onslaught of too much new learning happening all at once. So, my theory is that if you can control the timing of demands in new learning, you will allow your brain the time it takes to learn the millions of new procedures required to do all of the things you used to do.

I think relativity is just about perspective. Things that are overwhelming (or too fast for) you are just at normal speed for anyone who hasn’t had a head injury. Give a new task to someone (like learning a new language) and they too will feel overwhelmed if the information comes too fast for them to process it.  Your challenge will be in realizing how much new learning it will take for you to do the things that you learned in your past.

Controlling timing requires planning. While you’re learning how to be you again make a daily plan and stick to it. I know, it sounds tedious, but it really helps.  Planning works because it causes you to become more aware of the relative demands of any task. When you sit down and try to make a plan for your day, it makes you assess both the complexity of any task, and the length of time a task will take. It also forces you to complete one task before starting another. If you allow yourself the time to focus on one task, you won’t get as tired and you can actually learn. Don’t be surprised if you’re way off in your estimates at first. Little things like getting ready to leave the house aren’t all that little. But if you write a plan, and actually follow it, you won’t go into system overload mode nearly as easily. This is a less is more time. If you finish a task sooner than you had planned, don’t skip ahead to the next task, reward yourself with something restorative, a nice bonus activity like a walk outside with no purpose at all. Planning allows you to learn faster, you’ll have fewer mess-ups, and your head won’t hurt as much.

There will still be things you can’t control-like other people, but you can gradually increase your exposure to chaos. If you have to attend a meeting or even just a social event, give yourself more than enough time to get there and make a plan for downtime to process right afterwards. If you’re used to accomplishing a lot in a day, you have to let that expectation go for a while, and make planning and re-learning your top priorities.

I’ve written a lot today. If I were to read this myself, I wouldn’t be able to digest it all in one reading. It took me hours to write it, and I had to take several breaks. Planning so that you can control timing is a lot of work, but even if you just attempt to plan, you’ll have an easier time focusing your attention on one task at a time. You might stop bumping into things, forgetting what you were going to say, and you may even find your car keys without a panic the next time you go out. There is no surgical procedure for getting your brain to work efficiently again, no breakthrough medication, just a whole lot of healthy living and a deliberate approach to taking it one day at a time. Good luck, I’m there too and I’m happy to continue to share everything I learn. If you’re having a hard time, get help with this, and if you do nothing else to day, get outside and breathe. I’ll leave you with a view of my outside, that’s where I’m heading now.DSC_0244

Work

Day to day in my post-concussion adventure, my life looks pretty normal. I can drive a car, make meals, exercise… if I had a half-decent golf swing I’d be ready for retirement. But I’m not there yet, I want to work again. The problem is that work is like a treadmill that is always on. I’ve stepped off that treadmill, and it’s going to take some careful timing to get back and stay there. Picture Lucille Ball attempting this and you’ll have some idea of what I might look like in this challenge! Honestly, I’ve tried it a couple of times and fallen off, but I’m not giving up yet. If you have taken time off work due to a head injury and you feel ready to go back, keep in mind these two things:

Assessment & Preparation.

  1. Assessment: A cognitive assessment is a good reality check.  The physical symptoms you feel post-concussion are hard to miss, but the impairments to the brain are so elusive that they can even be missed by the person attached to that brain. It’s hard to know what you don’t know. So, if you are feeling like you’re coming out of the concussion fog, that’s awesome. This is a good time to see where you are in terms of processing strength. (Another analogy, but your brain is similar to a computer, so before you put your own personal computer into full time work, make sure you know your capacity so it doesn’t crash.) The cognitive assessment I had involved memory, attention, concentration, multi-tasking, listening and following directions. I failed miserably on a number of the tests but that’s ok, at least I know what I need to work on now. The next time I write, I’ll share some specific strategies for memory, attention etc, but for now, make arrangements to get an assessment. It should involve standardized tests so you can identify areas of strength and weaknesses. If your employer has a wellness program, this would be a good place to enquire about an assessment. Your doctor may have to make a referral for you. Keep in mind, the purpose of this test is not the same as CT or MRI imaging tests, which look for physical injuries. A cognitive test is more of a functioning test, to isolate specific processing tasks that your brain needs to do to work efficiently. If you push those weak areas, you’ll get a headache, so it will help to know what you need to work on.  I’m sure there are private clinics available for cognitive testing, but see what you can find through your employer (or union if you have one) first.

BTW, I said I hate analogies, but sometimes an analogy is less overwhelming than reality, so for today, substitute treadmill for your job and personal computer for your brain... and Everest, well, you know what that is.

 

2. Preparation: The results of your assessment are going to give you target areas to focus on for your brain. The agency that does the testing should be able to provide guidance for you in the types of exercises you should do. These are going to be very individual, so I can’t really address them here, but this is typically the role of an Occupational Therapist. Private clinics offer technology to address brain impairments, but I don’t think these exercises have to be fancy or expensive, just appropriate for your individual needs.

Once you start to progress with your brain’s capabilities, you can think about your transition back to work. The very nature of work is changing so rapidly today that any job you did pre-accident is likely to have changed in some way while you were away. Little things like updating passwords, new software, even changes to personnel will all be adjustments to face once you return to work. Beyond adjusting to these changes, work is, well, work. Your full-time job recently has been to take care of yourself while your brain heals, and you are now preparing to add a second job to your workload, so don’t dismiss it as back to normal because you used to do that job. Your world is about to get bigger again so you had better be prepared.

Slow exposure to the work environment is going to be the key to fitting back in. You can’t slow the treadmill down, but you can step on in small doses. Prepare yourself for work by rehearsing it. Try to think of a typical task in your job that requires you to focus for some length of time, and practice it at home. Work for 5 to 10 minutes-if your head hurts, you’ve worked too long, stop before pain takes over, and take an activity break. Get up, move around, breathe (meditate if that works for you) but shut off the task you were asking your personal computer to do for a few minutes by doing something completely different. You can gradually prepare to do the types of tasks you will need to do when you actually step back onto that treadmill if you rehearse with similar mental challenges, allow yourself rest breaks, and gradually build up your stamina.

I mentioned the level of difficulty you’re going to face as you get near the top of Everest in my last post. This really is the most difficult stage of healing from a head injury. (Sorry if you hate me now, but I’m there too!) You can stay where you are right now, that’s ok.  But if you are like me, with some ridiculous drive to push yourself to continue to learn throughout your life, well, these are the first steps.

I’ll end today with a picture of some kiteboarders I saw on a California holiday a few years ago. Watching these supreme athletes flying back and forth with such skill was truly impressive. But when they came to shore, we realized that most of the boarders were over age 50. I asked one man how he got into this extreme sport and he said it was easier on his knees than the sports he did when he was younger, so this was his new thing. I’m not likely to try anything so adventurous soon, but this image continues to inspire me to learn new things. Good luck with your own healing and I’ll be back soon.

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Healing is work

I met with a counsellor about six months, and he so angered me with a  comment meant to inspire me: “You’re almost there, now this is where the real work begins.” He told me that this head injury was my Mt. Everest, and although I had made it to base camp, the hard work was about to begin. I was so mad. And he was so right! (@#$%^)

I hate analogies. Even without at head injury, I have always preferred people who get the point. But I have to say, I finally understand his point, and it was a pretty good analogy. Six months ago, I was sure my concussion had healed- it was only a concussion, after all, not a serious brain injury, so I thought. Surely, it should have healed after three months. I was so wrong. I can now, with absolutely no doubt in my mind, state:

If you are trying to heal from any kind of head injury, no matter how severe the impact to your head, you have to work at it. It doesn’t just happen automatically.

Someone surely has written a book on this, but it’s just so hard to read when you have a head injury, so it wouldn’t matter anyway. If you are looking for ways to help someone with a head injury, or if you yourself have stumbled upon this post, please consider these discoveries that I have learned through my own brain work:

  1. Actively work at a program of brain workouts : Rest is important, but resting all day does not do anything for neuroplasticity, and over-use doesn’t give nerve cells time to heal. Figure out what will work for you. Choose activities that stimulate the brain in a healthy way: journaling, logic puzzles, Sudoku, reading, listening to podcasts or music, drawing, even just colouring, all are gentle ways to stimulate your brain. When you are first injured, you’re going to be able to handle about 5 minutes at a time (thus the name of my blog.) Over time, you’ll be able to last a little longer, but if you push it, your endurance will not improve. Watch for warnings (headache, dizziness, ringing ears, pressure on your temples etc.) If any of these symptoms increase, get up and move around, and don’t go back to the activity until your symptoms start to calm down. Listen to your body.
  2. Pay attention to any secondary injuries: I don’t think you can have a head injury without straining at least some of your soft tissues. Neck and shoulder pain doesn’t just go away. The muscles holding up your head just get tighter, pull on other parts of your body, and if you don’t have treatment on them, you’re going to end up with pain in weird areas, like a hip or a heel, and then it will hurt too much to exercise, and then you’ll be in a bad mood. So, try Physiotherapy and MASSAGE THERAPY… I am literally going to bake a cake for my massage therapist tomorrow- I can tilt my head up and down now for the first time in ages, and I feel like a new person today.
  3. Structure:  You’re going to hate this one. When you have an injury to the brain, there is a bit of a spacey state of mind that is not an altogether bad thing. In fact, the things that normally stress people  ( money, being late, worrying about money or being late) well, they don’t really seem to register when you’ve had a head injury. Having a poor memory is sometimes a blessing!  But if you want to get better, it is important to create some structure for yourself.  Make plans for your days, write everything down, and get as organized as possible. Do your best to avoid having to make decisions on the spot. As your brain heals, you will gradually be able to think critically again, but for now, create a structure for yourself around the basics: Eat well, get exercise, work at activities that are good for you and be patient with yourself.

I will leave you today with a picture from my part of the world. It’s nothing flashy, just a nice way to end the day.

Beth.sunset