Pain

Marcus AureliusJPGI opened a new book yesterday, and this was on the first page. Hmm, timely.

At this point in my blogging career I feel I can give advice about dealing with pain. I’ve had two years to practice it! The good news is that my self-proclaimed expertise stems from the fact that today, I am not in pain. I have succeeded on a fairly regular basis to not be in pain every day. I’m very happy about this. This is a landmark event, worthy of at least a take out burger from my favourite local food cart. While I polish off the aforementioned burger tonight, I thought I’d celebrate with a post on pain, post-concussion.

The chronic pain I would like to address is the most common side-effect of concussion, the dreaded headache.  I heard a friend moan the other day that she’d had a cold for four days, four! (When was it going end???) Though I truly felt her pain, I have to say that one’s perspective on enduring pain tends to shift when you have pain that just doesn’t seem to go away, ever.

So today’s advice comes from the core of my rehabilitation team, Therapists: Physiotherapists, Occupational Therapists, Counselling Therapists, I even tried Acupuncture- when you put together all of their research on the pain associated with head injuries, the evidence is clear, you have to retrain the brain to look at pain in a different way. It doesn’t just go away. If you have had a concussion, you’ve already been told that there isn’t a medical treatment to repair the injury. Research in Neuroplasticity has shown  that you can grow neurons to replace the broken parts in your brain, but those neurons need training, and if the pain mechanism has been lit up by your injury, it’s a pretty safe bet to say that waiting to get better is not going to lessen your pain. In fact, the waiting game does the opposite.

Being a particularly stubborn person and not a very good patient, I tried to push my cognitive endurance through hard work and not only did that not really accomplish anything, it brought on headaches. The chronic headache of a concussion is like no other headache I can remember, it builds, tightens and spreads until you just have to give up and go to bed.  But there is hope for this kind of enduring pain:

Look up Lorimer Moseley:

http://www.bodyinmind.org/who-are-we/

You can watch his Ted Talk (he’s pretty funny) or read further, but I found his research to be extremely helpful.  If you’re not up to doing research, I’ll do my best to give you a summary of the advice from a document I found in the library:

Understand Pain, Live Well Again, a Guide to Pain Education for Busy Clinicians and People with Persistent Pain by Neil Pearson ( and yes, it’s based on the work of L. Moseley.)

His Key Advice: Anything the nervous system practices it can learn. When you have persistent pain, your body can start to send pain messages for normal body sensations, just as if they are dangers. These changes can be reversed through deliberate practice.

Keep in Mind:

1.You are able to influence what your brain pays attention to. If you pay attention to activity not related to your pain, such as deep breathing, your brain won’t notice the pain.

2. You can change the way your nervous system interprets signals from the sensory system. You can convince you nervous system that the pain you have is not dangerous.

3. You can develop strategies to handle pain when it is triggered (breathing, meditation, visualization, try them all and see what works for you.)

4. If you practice these strategies over and over again, you can train your nervous system to respond to pain triggers in a new way.

 

That’s all for today (I don’t want to give you a headache!) When you’ve had some time to process this information,  look up Lorimer Moseley on Youtube: He’s the real expert, I’m just someone who has benefited from his research.

 

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You Are What You Eat

This expression popped into my head recently when I was talking to a friend about memory problems. I wasn’t actually referring to eating specifically, just building new habits. Successful head injury treatment is all about the way you move forward, not back. I have found that the most effective treatment for a head injury is more about education than medical intervention. Successful rehabilitation depends upon how much work you’re willing to put into learning new habits, and it’s really just up to you.  I have spoken with so many people who are frustrated with the lack of medical attention available to them. Any head injury is a serious injury, yet they seem to be left to their own devices with no answers to the questions they keep forgetting! I hope I can be of some help through my experience as a Special Education Teacher:

The bottom line in helping students with learning disabilities is to recognize any difficulties the learner faces, then to figure out how to work with what you’ve got. Well, a head injury can cause impairments to the brain’s function that are similar to learning disabilities. So my approach to my own head injury is based on my educational philosophy: I need to adapt if I want to continue to learn, work, and have an enjoyable life.

Upon the advice of my sister (my wonderful coach through this whole experience) I took some time this week to make an inventory of the post-concussion problems that seem to have stuck with me, and matched each problem with the strategies or tools I use to deal with them. Your symptoms are likely to be unique to you, but see if you can adapt my strategies to create solutions for your own specific hurdles. The bottom line of today’s post is this: Accommodate your brain with the tools that are available to replace the injured areas, and then put in the time it takes to build new habits to help you to build new, lasting memories. 

Open the link to the chart below:

memory problems and solutions chart for blog

 

Microbreaks

I learned a new term yesterday that I’d like to to share because I think it’s a key element in Brain Injury Rehabilitation. The term is Microbreak. These are very short breaks of only 1-2 minutes that really help an injured brain deal with processing issues, aka, brain traffic jams. I take short breaks when I can, but my Occupational Therapist told me that these frequent pauses in activity are actually more important than longer breaks because they allow you to keep your focus and complete tasks. They are also a sneaky way to train the brain to learn new things without triggering your symptoms. I  found out that these breaks I’ve worked into my own routine are actually important not only in making me feel better, but they are also making me more functional.reading

I have to say, taking breaks and not working through to completion on anything has been one of the hardest adjustments I’ve had to make since my injury. If you’re the type of person who really enjoys a hobby or the satisfaction of a job well-done, you’ll know what I mean. Even if it’s just reading, there is something very enjoyable about spending an extended length of time focused on that activity  (especially if some other task, like laundry is competing for your attention!) I have always loved the feeling of staying up late to finish a good book, partly because of the calm focus of being completely absorbed in that one thing, but also for the sheer enjoyment of doing something I want to do. This kind of sustained attention is one of the pleasures that I miss the most. However, I think it is a skill that can be developed again, thanks to the use of microbreaks.

If you want to lengthen the amount of time you can focus on anything (post head-injury) you have to be careful not to push your limitations, that just hurts. Pushing through the pain reinforces the association your brain makes between the activity and fatigue. If you ignore the pain, it actually shortens the length of time you can focus on the activity. Look up this very helpful website on chronic pain: https://www.retrainpain.org. if you’d like to learn more about this topic.

Back to my point: Short breaks, threaded throughout the increasing length of time you focus on a task will allow you to increase your focus over a period of weeks (not days.) I have found that if I increase the time, allowing little breaks (like a short walk up and down stairs) I can focus longer. I usually have to hold the increased length of time for a week or so to adjust to my new tolerance level. Once the new length of time starts to feel ‘normal’ I add on a little more focused time and try that out for another week. It’s an incredible test of your patience, but with the little breaks built in, this just becomes a new way of working, or reading, or whatever it is you’d like to do more of!

Don’t wait to feel better

Most head injury support seems to be focused on the early days post-accident. My focus is now on long term rehabilitation. If you want to do more with your day than rest after a head injury, it’s also important to make a deliberate plan for adding on. The trick is to gradually introduce new challenges to this threshold level of stimulus that your brain can tolerate. There is a real art to finding the rate of increase that will help you to improve your overall function. The experts on this are Neurologists, Speech/Language Pathologists, Occupational Therapists, not me, I’m just reporting on the advice I have been given from these experts. For your own support, seek help from professionals. A blog is just a personal account, hopefully a resource for people who are looking for a place to start to get help.

Daily Challenges: It is important to continue to work at increasing your overall functioning long after having a head injury.  Any increase in the level of activity you attempt must be taken at a very gradual rate. Whenever you introduce a new activity, give yourself a few weeks to include that activity within your day to day routines. It’s normal to feel an increase in symptoms initially when you add to your day, but after a week or so your brain will start to have learned the new activity well enough not to set off the ‘alarm’ of symptom flare-up. If you find you can get used to new activities in this way, then you’re adding on at the right speed. If your symptoms are intolerable, cut back.

I’ll use my own day to day plan to give you an example:

  1. I give myself two hours to get ready in the morning, one for rehab exercises, and one for breakfast/shower/dressing/getting out the door on time.
  2. Brain Exercises: I start each day with three brain-type exercises on my phone: Red Herring, 7 Little Words and Lumosity, and a coffee. The first two apps are free, Lumosity has an annual fee. The key to using these types of specific brain exercises is doing them absolutely every day and in just treating them as fun games. They all target memory and attention in a very contrived way- they aren’t going to cure anything, they may not even transfer to real life, but they give me a daily workout on the things that are difficult for me so I feel they’re worthwhile. If I have time, I’ll add either meditation or some sketching. Any relaxed, enjoyable and mindful activity is an excellent way to prepare for a successful day.  Without a purposeful start to the day, I tend to have a frustrating day full of mistakes.
  3. Cardio: If I leave this out, I really notice the difference not only in my energy level, but in my ability to think. Even if it’s just a short walk outside, getting some exercise every day is really important for your brain. Increased blood flow=more oxygen=better thinking.
  4. Work/hobbies/errands/social time: Over the long term, the core of each day is not focused on rehab, so I have to approach every activity in my day with my overall brain rehab in mind. For example,  I don’t rush anything. As soon as you rush yourself, you’re adding more work to the already increased brain activity and that’s when you start to mess up on the little things. I plan for breaks throughout the day and I limit the amount of time I spend on any one activity-even having a visit with a friend. A break in between activities is quiet time alone. Initially, I used a meditation app on my phone called Headspace to help me with this. You can set it for a 10 minute meditation to take a quick break. I don’t really need the guided meditation anymore now, but I think that’s because I used the app to learn how to quiet my brain down. In summary: Plan your day, include breaks, and don’t rush or multi-task.
  5. Long-term commitments: I think it’s really important to find something beyond your own rehab to focus your energy on. I’m talking about volunteer work, and exploring new interests. I have made a deliberate effort to make the best of my situation both by trying to help others, and by exploring new interests. My first volunteer activity was in starting this blog when I was  in a brain injury rehab program. I’m a teacher-if I can’t teach in a classroom, I’ll find a way to share information that I feel is important. I have also worked with a local health resource person to form a head injury support group. She manages the organizational details, and I provide a way for people to share. My personal exploration of a new interest is through art. I think it’s important to look not only at the deficits caused by a brain injury, but also the changes that may be beneficial in some way. For me, my visual strengths seem to be making up for the problems with my auditory function. So, I’m learning how to paint. It’s fun, it’s quiet, and it’s also a very gentle way to increase my ability to focus using a part of my brain that feels strong.
  6. Long-term lifestyle changes: No accident is something you’d chose to experience, but even the most minor accident gives you an opportunity to learn and to grow. A head injury causes you to slow down and pay closer attention to things that matter. It forces you to make deliberate choices on the way you spend your time. I would imagine that even just slowing down to plan out your day with rest breaks for your brain is probably a very big shift for most people. It’s not a bad thing to shift to a proactive approach to life, rather than a reactive one. Below is a peek at one of my early paintings. I took a painting class and really enjoyed the opportunity to focus on making something. I strongly recommend trying something creative like this-who knows where it might lead?cropped-dandelions.jpg

Endurance

I think the best thing I can do to help people who have suffered a head injury is to increase the general awareness about the effect of this type of injury. My best description (today at least) is that recovery from head injury is an endurance event. No recovery can be rushed, so if you’ve hit your head and you’re still dizzy after a couple of weeks, you might as well take some time to make some sense out of this injury. That’s my purpose with this blog. I write from first hand experience, and hopefully you’ll be able to see that many things are still possible after a head injury, it just takes time. If you have entered the world of head injuries from the other perspective, worrying about a loved one who has had a head injury, the best thing you can do to is to be patient and to help out with the things that aren’t working so well. It might take some time to notice any long term effects of a brain injury, so patience is the best kind of support you can give.

Initially, it’s hard to notice what is different after a head injury. I think this is because the injury to brain tissue causes a functional change, not a physical or visible change. The injured brain may be slower to integrate new information, to make connections to previously learned information, and sometimes there is just too much incoming information to process in the moment. This is very difficult to articulate, but when your brain has been disturbed enough to impact neural function, everything feels different. Everything, that is, except your personality. A person with an injured brain can still have their original knowledge, memories, talents, values, none of these core aspects of a person change, it’s their sensory and operating systems that have changed. This is why a head injury is a severe  injury.  The disconnect that I have experienced and observed is in continuing attempts to interact with the world in way that feels normal,when symptoms, limitations and confusion keep interfering. It can take some time and repeated missteps to realize that things have changed, and the last person to realize this is likely to be the person with the injured brain. I now understand why the best medical advice after a head injury is to rest, then to wait and see.

Instead of trying to fix the brain, it’s best to focus on everyday functioning. There may be times when a person with a brain injury is functioning well, and times when things just don’t seem to make connections. This is where endurance comes in. It takes practice and learning through mistakes to figure out how to function after a brain injury. The best source of help I have found in adapting to the changes in my own brain has been through Occupational Therapy. I’m slightly embarrassed, or maybe I should be proud to report that I have had the pleasure of working with seven Occupational Therapists over the past two years.  The information I try to convey in this blog is from a gradual integration of the information I have gained through these wonderful, caring professionals. If I meet anyone who is having trouble making sense out of the changes in the way their brain operates after a head injury, my best advice is to get an Occupational Therapist.

I hope that an increasing general awareness of the nature of brain injuries will allow more people to access the help they need. When I hear terms such as epidemic and long term disability associated with head injuries, I still can’t believe I have had one (given the fact that I can write a blog.) Well, I can write, but it’s hard work for me now, this took a few hours. I will continue to push my own limitations because that’s what I’ve always done and I’ll share here because I know how scary it can be when you can’t just shake off the effects of a blow to the head. I will leave you today with a picture from a sailing trip we took a few years ago. We met this man rowing his boat from Washington state, up the entire coast of British Columbia. He had a good raincoat and hat, some camping gear, really strong arms and incredible endurance. ( and he looked a lot like Santa Claus!)

Maybe his image will help inspire you with your own endurance today.IMG_20150820_190926

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.

echinacea