The Great Circus

Step with care and great tact,  and remember that  life is a great balancing act. -Dr. Seuss

I had the pleasure of watching Cirque du Soleil perform back in December with a friend. I took the 1.5 hour train ride in, did some sight-seeing around the city, enjoyed the show, went for dinner, and then another train ride back at the end of it. Certainly a full day, and was tired out by the end of it, but had a great time.

Flash forward to the beginning of May. I had tickets to see another Cirque du Soleil show in a different city. The itinerary for the day was more or less the same as my previous experience, but wow, did the day ever go differently. I knew I was in trouble when the show started off by one of those competitions where they see what seating area can cheer the loudest. Coming from a background of post-concussion syndrome, these contests spell bad news. Who decided it was a good idea to scream as loud as possible, for fun, in the first place? Is the minuscule amount of entertainment pleasure some may derive from having the volume louder worth the pain it can cause to those sensitive to such things? It was tempting to walk out at that point, but the promise of a good performance and $80+ per ticket, I wanted to stay and see what the rest of the show brought.

There were some incredible acts, but unfortunately these were accompanied by music so loud you couldn’t even hear the crowd cheer. And I’ll remind you this is the same crowd, who at the beginning of the show had mightily demonstrated capabilities of reaching very loud volumes. Some unfortunate placement of spotlights also shone bright light directly in the eye of audience members. I didn’t make it past the intermission.

It was frustrating. I felt defeated. There was no physical or cognitive exertion required from me, I just had to sit there and take in a show, which I was eagerly looking forward to enjoying. Why was it so difficult? Why did I struggle so much this time when a few months earlier my day went without a hitch?

It was a reminder that in some ways I’m still not past this “brain injury”. There are good days and bad days, and I can’t always control them. I still need to walk the tight-rope, and juggle my priorities – balancing to making the most of the abilities I have while respecting the limits that still exist.

 

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What is normal?

As mentioned in my last post, I am starting the feel the best I have in the nearly 6 (6!) years since my concussion. But while I am finally drawing further and further away from what was clearly “abnormal” compared to a healthy person in terms of symptoms I experienced on a daily basis, I sometimes find myself questioning what exactly is “normal”?

D0es the average person feel this tired after a work day? Is it typical to be irritated by loud noises? Do most people feel the need to double check they really did lock the car?

It has been so many years now of living with lingering post concussion symptoms it is almost a distant memory of life without them. I remember in the time before the concussion my life was so busy with school, work, hockey and other activities I didn’t get much sleep so I felt tired all the time. My energy levels are better now than immediately after the concussion, however fatigue still is an issue and I have paced myself in the activities I do.

On average I seem to have 2 days per week where the headaches are bothersome enough I take medication for them. The bad days aren’t as rough as they were before, but that frequency still is not where I want to be nor would I say that is “normal”.

I have been very fortunate that the concussion did not noticeably affect my cognitive abilities or memory. However, it is in the back of my mind that mTBIs can have these effects, and so sometimes I have a small worry if this could be true in my case down the road. You know, little things like wanting to double check if I unplugged the iron or locked the car. It’s been so long I almost forget if I did this before the concussion. But then again, on the job I notice co-workers who will forget their coffee downstairs, etc. so I think most people will have moments at one time or another of being absent minded.

I am participating in a long term study run by a research team out of a university in the USA that follows people with a history of concussion. While it seems long term consequences or issues emerging later in life on are more so the case in people with repeated concussions; I sometimes worry if because this concussion has had a significant impact on my life in the immediate time period post-concussion, if there is risk for years later on in life. Maybe the long term results of this study will be the only way to know for sure.

But for now, I try not to be too concerned and focus on appreciating where I am at right now and for the progress that has been made. While I do have some lingering symptoms that would not be considered “normal”, I am happy to now be able to function “normally” with some minor accommodations in work, fitness and social life.

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Long overdue

It has been on my mind for awhile now to write another post as it has been nearly one year since my last blog entry. And my goodness, a lot has happened this past year!

I officially graduated from university, with 2 degrees at that, after 8 years of post secondary education. I passed my licensing exam for my profession and have been happily employed since. Not yet working full time hours, but closer than I ever was before. Definitely still good days and bad, but the good are better than ever and the bad isn’t as brutal as it used to be. Mind you, I still need to be careful and not overdue things, pace myself and get plenty of sleep, etc.

My physical fitness has improved, which definitely helps to improve morale and my overall well being. I’ve been able to manage some low intensity jogging, which is great because I consider running to be one of the more difficult activities to be added in post-concussion (tough because of it requires higher levels of cardiovascular fitness and the pounding/up and down). At one point after the concussion I couldn’t even come close to doing a push up, now I can do 6 consecutively with minimal exertion. I have been able to fit in some games of tennis, ping-pong and badminton which have re-ignited my love for sport. The competitiveness, creativity and reflexes with games (as opposed to pure fitness sports such as swimming, running, cycling, etc) bring me such joy. The aforementioned racket sports were never exactly on the top of my list of favourites, but at this point I am staying away from team sports and activities where there is a higher risk of someone bumping into me.

The sport that would be hands-down at the top of my list is hockey. I’m still of the mindset the closest I will get to an actual game is on the sidelines as a coach, but I have been able to get a pretty good taste on the local outdoor rink going for a skate by myself. I’m extremely picky when I go on the ice, and make sure there aren’t many other people on the ice, be cautious and wear a helmet. It felt great going for a skate with a stick in my hand, nearly 6 years since the last time I did so! Although it brought me much happiness, there were twinges of sadness, longing for what I miss.But I do still have so much to be grateful for.

My intent is that this will be a post of hope for others working their way along the post-concussion journey. By no means am I “out of the clear” but I feel as though the worst is over. I never imagined it would take nearly 6 years to get where I am today, but I sure am glad I finally got here. And I certainly am planning on gradually seeing further improvements.

THINGS DO GET BETTER!

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A Smart Investment

Tax season is upon us here in Canada and so I have gone back to review the amount of tuition I paid in the 2015 school year. This also happens to be my final year of school after an eight year journey. As I am now done, going back to look at the 2015 fees got me interested in totaling the direct cost of my education over my entire education . It turns out to be approximately $100,000 in tuition and school fees.

I studied in a general science university program before getting into a professional degree program. The concussion and subsequent time off and reduced course loads extended my schooling an additional 2 years than originally planned. I studied at a great university and my education has set me up for a great career, so it was definitely worth it. Putting a (significant) number to it, really drives home just how much of an investment (in my brain) this was.

There are many reasons to take care of myself and minimize risk of future injury after a concussion, but reflecting on the magnitude of the investment in my education, in my brain, certainly adds one more reason to that list. I feel very fortunate to have retained my cognitive abilities after the concussion, which occurred about half way through my education. Acknowledging this gift, and perhaps how quickly it could slip away in the event of another bad concussion, motivates me to do the best I can to protect myself, even when it means continuing to stay away from hockey, my favourite game on earth.

So I will stay devoted to looking after myself and focus on recovering as my brain still deals with post concussion effects. Considering the years and resources I’ve spent on my education, that is a smart investment.

 

 

 

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What are your plans for the weekend?

“Oh not too much, probably just relaxing and taking it easy”.

A common exchange with my co-workers where I am less than pleased with my response. I wish I could be sharing tales of weekends jammed packed with excitement, and adventures that a typical twenty-something year old would be doing. A well meaning colleague has even caught on and chimed in, “We have to find you some excitement to do”. If only it was  that easy to simply add plans to my weekend to make it more enjoyable. Finding things to do isn’t the problem, it is having the energy and stamina to do them.

I am on a work placement for the final part of my schooling, and although I am not working full time hours, I am worn out and exhausted by the end of the week. For the most part, weekends need to be a time for me to recharge and rest up for the following week. If I have too much going on on weekends, I end up starting the week “running on empty” and things just go downhill from there.

Now that doesn’t mean it is all work and no play, but I have to be much more strategic on what plans I can make. Since I am only able to work 5 hours per day, I generally ensure any plans I have on the weekend are for a shorter duration than that. If I have something going on Saturday, I make sure the Sunday stays low key.

So what are my plans this weekend? Well I plan to have minimal-to-no headaches and not be exhausted. The past 4.5 years these plans have not completely come to fruition, but that is what I will continue to strive for!

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Happy Father’s Day

I am very fortunate to have two loving and supportive parents who have helped me through all the difficulties of post-concussion syndrome. Although as a young adult I am at a point in my life where I would like to be off on my own, when I am not feeling 100%, often the place I want to be most is at home with family. Last year I dedicated a post on Mother’s Day, so this year I would like to give a shout out to my dad on Father’s day.

My dad accompanied me to many specialist appointments and treatments. Early on in my post-concussion journey, driving a car was particularly difficult for me. As such, my dad did a lot of driving. While I was away at school this often meant he would drive a distance to  pick me up, drive to another location to the appointment, drive me back, then he would drive himself home. I know my dad has a busy work schedule so this meant a lot of sacrifice on his part.

Knowing how devastated I was to be forced to give up physical activities while recovering, at one point my Dad offered in solidarity, to give up biking also. I was able to talk him out of it with the viewpoint that I didn’t want any more people to miss out on then fun, but I appreciated the gesture.

I can always count on my dad for an encouraging word and voice of reason to pick me up when I am down. My father is a man of few words, so like him I will keep this short and sweet. Thanks Dad for your support! And on behalf of other PCS sufferers, thanks to all the fathers and other support people for helping on this journey. I am sure it is not easy for you either!

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Thinking, I’m Blessed

I am very grateful to have recovered to a point where I can successfully continue on with my education. I have been fortunate my cognitive abilities have not been significantly impaired. With the exception of the first week or so initially after the concussion where I was “slowed down” and “in a fog”, my ability to think has stayed intact. Schoolwork is definitely more of a challenge than it was before since I tire easily, experience frequent headaches, and symptoms tend to worsen with cognitive activity. Lingering symptoms caused me to take reduced course loads, which fortunately my school was able to accommodate and has made it manageable for me. The downside is that it has caused me to delay graduation by 2.5 years, but the good news is I will still graduate and still love my field of study.

Especially in the final few semesters when my symptoms were much improved, I started to feel “smarter”. As if it was easier for me to absorb material and understand. I wonder if there were lingering, subtle deficits that were impairing my performance that perhaps I didn’t notice existed until they were gone. Perhaps after many years of having to deal with post-concussion syndrome I just forgot what my normal was. Or maybe the hit the head made me smarter? I’m joking on that last one, but there are fascinating stories out there of head injuries unlocking incredible talents and an “inner genius”.

Brain Damage Unlocks Genius Within

 

When a blow to the head creates a sudden genius

All kidding aside, another factor I think has helped me academically is my experience with concussion eventually caused me to fine tune my focus. Yes, at times, the symptoms and pain could make it hard to concentrate, but at the same time they made it so that I could only focus on one thing at a time. Multi-tasking would overload my brain. A mindfulness course I took further helped me to focus on the here and now. You learn a lot more in a lecture when the only thing you are focusing on is the professor speaking, as opposed to trying to do multiple things at once: finish writing a paper, checking emails, chatting on Facebook…

I have completed the classroom portion of my schooling, and am now left to complete a placement component. While I am a bit bummed out that it’s been over 4 years since the concussion and I still cannot work full-time hours, I am pleased that I have been able to increase to 5 hours per day, up from 4 hours per day when I started in March of this year. One of the big things I have learned from post-concussion syndrome is patience, so although things never seem to improve as quickly as I would like, I am grateful for the progress I have seen and hopefully will continue to see, as I finish up the remainder of my schooling.

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MRI Scan: Not that bad!

I recently had a head MRI scan, my third in four years. Everything came back fine with the scan, thank God, but I must admit my pre-scan MRI anxiety levels have been increasing with progressive scans. You would think it would get easier as I go along, especially since I have not had problems with the MRIs in the past, but it seems the power of suggestion was taking its toll on me. Every time they went over the pre-MRI scan checklist (do you have a pacemaker? Have you ever wielded metal? Are you CLAUSTROPHOBIC?, etc) thoughts seemed to creep in, I don’t think I am claustrophobic but what if I am? Maybe I am claustrophobic. An MRI scan would be terrible then. What if it doesn’t go well?

Aside from the repeated claustrophobia mention on the questionnaire, the MRI anxiety seed was also planted from other sources. I was reading “The Day I (Almost) Killed Two Gretzkys… And Other Off-the-Wall Stories About Sports… And Life” by James Duthie (a Canadian Sports Journalist) and there is a chapter entitled “Torture Tunnel”, and yes, he is referring to a MRI scan. To quote from the chapter, “Well, if you don’t know what MRI stands for, I’m here to tell you. It stands for… DEATH TRAP! HELL HOLE! TORTURE CHAMBER! RUN FOR YOUR LIVES!” He then goes on to describe how frightening the experience was and how he refuses to have another MRI scan ever again. Overall I thought the book was a great read, but that chapter frightened me a bit about the thought of having another scan. A second incident occurred in class. I am studying to be a health professional and we were learning about anxiety disorders. Our professor was using her own story as an example, and described in detail how she had a panic attack in an MRI machine and refuses to ever have another MRI scan done.

So I was psyching myself up a bit. To prepare for my third and final scan for success, I had a plan. Have thoughts in mind to distract myself from negative judgements or feelings; these included song lyrics, to do lists, prayers etc. anything to keep my mind occupied.  I think at some places they have music available, or even video, but this was not an option for me. Also, to not open my eyes – it helped on this front that they were able to put a light cloth over my eyes – I think if I did open them it would freak me out a bit.

When I was booking the appointment over the phone, he told me the appointment would take about 40 minutes which sounded like an awfully long time to remain completely still in a closed metal tube. Fortunately he was accounting for the logistics as well so when I got to my appointment I was advised the scan itself would only be 20-25minutes.  The technician was really great and talked me through the whole thing “you’re doing great; this next scan is 4 minutes” etc. (different sections of the scan have different sounds). It went quicker than I remembered from the previous 2 scans. It went well. I didn’t love it, but definitely not as scary as I had previously imagined.

You also may be wondering why I have had three scans, as that certainly isn’t protocol for post-concussion syndrome. It is my understanding they will order a CT or MRI if concussion symptoms are prolonged or anything else is concerning to rule out other causes (concussion itself does not show up on a CT or MRI scan). There was cyst identified on my pineal gland which is, in most cases as in mine, an incidental finding that does not cause any symptoms. Apparently it is not uncommon to find these pineal cysts (estimates vary, but one source noted approximately 2% of healthy adults have these), and it is typically monitored with a repeat scan in a few years to ensure it has not changed in size. I am relieved mine has not changed in size and I will require no further scans.

Though, I have learned, the MRI experience really isn’t that bad! Our mind can tend to work ourselves up with anxiety to think it is worse than it actually is.

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Yoga and Mindfulness Meditation

In the past, I did not consider myself a fan of yoga or meditation. I would much rather take on an activity with a lot more “doing” such as going for a run, swimming, playing hockey, or weight training. With all the holding of postures and staying in one spot, yoga just was not my cup of tea.  But with post-concussion syndrome came a lot of changes to my life, and my relationship with yoga and meditation was one of them.

Buying into yoga was certainly not a quick or complete conversion for me. It was certainly not love at first sight, or second, or third. It probably took over the course of 2 years of trying yoga off and on for me to really develop an appreciation for it. For where I am right now in my concussion recovery, yoga is a good fit (specifically “gentle”, “mindfulness” or “relaxation” yoga). There are certain postures I have to avoid (such as “legs up the wall” or “downward dog” or any posture where my head is hanging downwards) as I find they cause uncomfortable feelings of pressure in my head. Yoga allows me to improve my flexibility; both physically, and more importantly mentally.

The yoga mindset is one of going with the flow. It is allowing yourself to be as you are, switching to a mode of “simply being” instead of “doing”. As one of the guided meditation/yoga CDs I work through says, ” let go of the tendency we all have to wish things to be different than how they are, allow things to be as you find them, allow yourself to be exactly as you are”. This is a key concept, as it can be very easy with post-concussion syndrome to spend away the day wishing things were different, that my life was not plagued by headaches or nagging fatigue. Getting into the mindset of acknowledging things as they are and realizing what you cannot change is important as being in a constant fight with a situation outside of your control isn’t going to help things.

I first became aware of mindfulness meditation when someone sent me a link to a video clip outlining the mindfulness meditation program offered by Jon Kabat-Zinn at the Massachusetts Medical Center. In the video, clients of the program spoke to their initial skepticism of the mindfulness program (the first activity in the course is often eating a raisin, very slowly, very mindfully) and wondering what they had gotten themselves into. By the end of the program, many were grateful of the significant impact it had on their chronic pain or other ailments. However, I do realize anecdotes and testimonies can be dangerous in determining the effectiveness of a treatment. Fortunately in this case, there has been research and clinical studies to back up the efficacy of mindfulness based stress reduction in chronic pain, depression relapse prevention and other medical conditions.

Mindfulness meditation focuses on awareness of the present awareness, instead of being caught ruminating about the past or worrying about the future. It emphasizes a non-judgmental observing of the breath, thoughts and body sensations. I especially found it helpful for me in dealing with headaches. I often didn’t realize that when I have a headache, my shoulders, neck, forehead, jaw, etc instinctively tighten. Often by bringing my awareness to this, I can relax and lessen the tension. It also has helped in other aspects of my life; for example in class I am better able to focus as I am more mindful when my attention drifts elsewhere so I can then make a conscience effort to redirect my awareness.

There are now quite a few practitioners that offer Mindfulness Based Stress Reduction (MBSR) programs, although they can be quite pricey. Practitioners need certification to teach the program which is typically offered as one 2 hour session per week for 8 weeks. I was fortunate that my university offered the program free to students. If you are not interested in taking a formal program or able to pay for the course (it can be hundreds of dollars), I’d recommend checking out if your local library has any of Jon Kabat-Zinn’s books (if audio-books, even better) which would be a great place to start. The MBSR course I took used the book “A Mindfulness-Based Stress Reduction Workbook” by Bob Stahl & Elisha Goldstein, which I found to be a great resource and often I re-listen to the audio guided meditations included with the book.

Because of my symptoms and limitations of post concussion syndrome, there was a lot less “doing” in my life. I was no longer always on the go or multi-tasking and spent much more time resting and low key activity. Initially it was hard not to be bored or frustrated at doing “nothing” but meditation and yoga helped me be at peace, and admittedly even start to enjoy the “simply being” part. Besides, we are “human beings” not “human doings“.

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Status Update

It’s been awhile since my last post. I wish I could say it was because things were back to normal for me and there was no looking back. I wish I could say I have now forgotten what it is like to have headaches and I could now handle full time work hours. But wishful thinking will not do me any good, and I am fully aware of the reality that this chapter of my life is not in a hurry to close.

But it’s not all bad. There have been significant gains. I am able to enjoy moderate intensity bike rides and length swims. It feels amazing to get my body back in motion and have a decent workout. Busy and noisy environments do not bother me nearly as much as they used to. The headaches, while still there essentially every day, have a lesser severity and do not last as long. My energy levels are better; not at pre-concussion levels, but definitely better. The light at the end of the tunnel is looking brighter, and I remain cautiously optimistic.

I am now in my final year of my university professional degree program. I have been fortunate school has been going well. In a sense, I find post-concussion syndrome has forced me to improve in certain areas as a student. For example, I know I cannot cram for exams; my brain cannot handle doing all that studying at once, so I plan a study schedule well in advance and get enough sleep. I also have found that my post-concussion brain could not handle multi-tasking, thus when listening in class or studying it has almost fine tuned my focus as I can only concentrate on one thing at a time.

Some other good news related to my previous “travel bug” blog post, I was able to do some traveling! I was able to tolerate a 4 hour plane ride to Alberta and do some sight-seeing. While I was a bit disappointed I could not do more hiking or see more attractions due to my PCS limitations & headaches, it was a great experience. Being with nature and taking in it’s incredible beauty, I find calming, and can almost forget about my PCS stuggles for a time. I think looking back even 1-2 years ago, I would not have tolerated such a trip, so I am glad to be at a point where I can handle such things. The views were breath-taking!
Moraine Lake, Alberta

So whether it’s been 3 days, months or years for you since a concussion, from experience I can say things do get better!

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