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Navigating Your Concussion/Traumatic Brain Injury

What follows is a brief overview of concussion or traumatic brain injury (TBI) from a combination of personal research and personal experience. It should not replace medical advice or treatment from a medical professional, but you may find it helps you through your own recovery, or helps give you some insight into what TBI can be like.



What is Concussion/Traumatic Brain Injury (TBI)?

Traumatic brain injury, or TBI, occurs when the brain is shaken inside the skull. This can occur from a blow to the head, falling on the head, or from events like whiplash where there is no injury to the head but the force of movement causes the brain to slosh around and bang into the skull.

Bruising occurs and the neural pathways that your brain uses to accomplish everything can be damaged. This may mean that before the TBI you could catch a ball in the air, but after you may find you have to relearn how to do this - because the body has to create new neural pathways for the skill or action.

Signs and Symptoms

No two concussions are necessarily alike. A small knock sometimes causes more damage than a big knock. We don’t entirely know why, it could be because of the area that took the brunt of the damage (either externally or internally), because of underlying factors, or previous knocks to the head. Sometimes a small knock can cause big problems, and sometimes a big knock can leave the patient seemingly unaffected.


Because the brain controls the rest of the body - from moving and orienting yourself in space, receiving sensory information (sight, smell, taste, sound, touch), to complex thought processes, logic, and our feelings and emotions - a TBI can have wide ranging symptoms.


This isn’t an exhaustive list, just a sampling of what you or someone with TBI may be experiencing.



Physical Symptoms: nausea, dizziness, loss of balance, loss of coordination, headaches, sensory overload, lack of energy, tiredness, fatigue, shaking/trembling, blurred vision, visual disturbances (eg. Odd points of light or looking at something and not seeing it), choking, difficulty swallowing, issues sleeping, changes in libido, changes in digestion/menstruation/body clock


Mental Symptoms: sluggish thinking (like your brain is full of mud or cotton wool), strange logic, fixating on topics, memory loss - short term/long term, lack of motivation, personality changes, lack of reason, loss of objectivity, forgetfulness, being convinced you’re being logical when you’re not, anxiety, depression, exacerbation of mental health issues, exacerbation of addiction issues


Emotional Symptoms: emotional imbalance, distraught crying for long periods of time, anger, frustration, sudden emotional outbursts or upset (often over something small or over nothing at all), feelings of hopelessness, feeling out of control,


Avenues of Treatment and Support

Many medical professionals are not trained to deal with TBI. It’s an area where we are learning more all the time, but we are far from mastering the treatment and management.

Your doctor or GP, or accident and emergency at the hospital are often your first port of call. It’s important to ask them for an ACC claim and a referral to the Concussion clinic - this is funded by ACC and (at the time of writing) there are no surcharges, so this is a great way to get free access to help across a broad spectrum of professions.


The concussion clinic can put you in touch with doctors, occupational therapists, physiotherapists and counsellors or psychiatrists and they’ll coordinate your recovery.


If you don’t have access to a concussion clinic, you can contact Brain Injury New Zealand. They have representatives across New Zealand and offer a range of services. They can help put you in touch with the help you need, support groups, and can advocate for you if you’re finding it hard to chase things up on your own.


If you have supportive friends and family around who are happy to help out they’ll be invaluable in your recovery - if you educate them properly! You’ll need to explain to them as best you can what’s going on, how you’re feeling, what you’re struggling with and what you need help with. If you can do this they can be as much help as the professionals.


Personally, I found the concussion clinic to be useful and got the best results from combining therapy with acupuncture, light therapy, support from friends and family, and diet and lifestyle changes.


Finding what will work best for you will be a matter of trial and error. For me, no one thing was the magic bullet. It took time, a lot of patience (not my strong suit), and a careful balance of a number of things for me to start climbing out of the concussion hole and to start regaining my energy and ability to function again.

Things that I found useful

Rest is your best friend. If your injury is significant, you’re going to need to take some time off work. For some it’s only a matter of a few weeks, for others it could be longer.

Don’t try to push through, if the injury is bad and you’re struggling, working will only slow your recovery down.


I’m going to say that again - TAKE TIME OFF TO RECOVER.


This is your brain we’re talking about, the Kiwi ‘she’ll be right’ attitude or ‘walking it off’ won’t work for everyone. You don’t want to take unnecessary risks with your brain, and believe me - you REALLY don’t want to be slowing your recovery. I’m three years into my recovery and it gets frustrating to say the least.


In my personal journey of recovery I found three things to be more important than anything else. These are not ground breaking - they’re important when managing all health concerns.


The corner stones of my recovery were good sleep, good food and gentle movement.


When you are recovering from a TBI you are often working with drastically reduced energy levels. I had days when I would wake feeling good and like I had energy again, then the act of putting on pants and making breakfast would use up all of that energy and I would have to go back to bed for a nap.


There were times when I went whole weeks feeling like I was floating through life, not entirely present and too tired to really even care.





Sleep is paramount. Anything you can do to improve your sleep (without causing yourself stress or worry over sleeping, that’s the tricky part) is a good investment. Staying off screens an hour or so before bed, avoiding stimulants or conversations or activities that will hype you up, and making sure you are sleeping in a dark, quiet room that won’t get too hot can all help.


For me, good sleep was hard to come by in those early months. I still relapse from time to time and experience periods of insomnia that make daily life nearly impossible. To counter this, and to ensure I didn’t get too stressed out about my sleep, I took to napping.


I scheduled in two 15 minute rest stops every day. I go somewhere dark and quiet, or use earmuffs and an eye pillow, set a timer so I don’t over sleep, and I lie down and focus on my breathing. If I sleep, great! If I don’t, I find that 15 minutes of sensory deprivation and quiet time is enough to reset my body. It can cure headaches and mood instability, and it means I can get up and get a few more things done rather than spending the whole day in bed.


Good food is for the most part the usual advice. Eat clean - avoid processed foods and junk foods. Your brain will be craving stimulants to combat the constant tired feeling, but don’t take them. Energy drinks and other stimulants will make you feel better in the short term but will slow your recovery in the long term. They’re like poison for your brain.


Likewise if you can avoid alcohol during your recovery your brain will thank you for it.


Advice on what to eat varies, and again (aside from avoiding junk food, energy drinks and stimulants, these should be avoided at all costs) I suggest you take a trial and error approach. Foods high in nutrient density and antioxidants are generally best, and some suggest following a low glycemic index diet.


For me personally I found eating mostly fresh vegetables and fruit (with plenty of leafy greens), some red meat, fish and avocados to be my winning combination. If I stick to these foods I improve, my energy lifts and I can cope with life. When I fall off the bandwagon or forget, or think I don’t need to anymore I notice I start to slip down again - energy levels fall, my thinking gets foggy, and I have more emotional outbursts.





Gentle movement was for me the hardest part. I’m used to hard exercise, really working up a sweat, and coping with life by moving. Some people find exercise beneficial when recovering from a TBI - in my case pushing beyond a walk only made me worse.


The hard part was that not moving at all made it worse too. It took me a long time to figure out a balance here, but for the most part I could go for gentle walks and my body responded well to this. It was always better if I walked in the bush or somewhere quiet rather than in strong wind or along a busy road - as too much noise overwhelmed my brain.


Other things I found useful was getting plenty of sunshine, going swimming or taking showers, and socialising. The key to everything was moderation - these things in the right amount made me feel better. Too much of things made me worse. For instance, if I don’t socialise I suffer mood wise and emotionally. But if I try to socialise too much I get exhausted and overwhelmed.


Trial and error will find your middle ground. The hard part is often keeping track. The frustrating part of TBI is if it affects your memory you’ll have a hard time recalling what helps and what doesn’t, or how long you’ve been doing something.


One of the things I used to help with this was the whiteboard method. I found myself a large whiteboard and drew a grid on it. Days of the week went across the top, and down the left hand side I wrote things I knew made me feel better - eating well, sleeping well, napping, socialising, sunshine, gentle exercise.


I then ticked off the things I did on each day of the week. So long as I kept in mind that three ticks was a good day and didn’t try to tick every box every day and wind myself up about not ticking enough things off, this helped me look back and keep track. Often I’d have a bad day and then sulk as I couldn’t remember having done anything wrong. When I started using the white board if I had a bad day I could look back - often I would find I hadn’t eaten well the last few days, or my sleep had been rubbish, or I’d missed my naps. This was a huge help for me.


I also put together a sliding scale of concussion. Once I had enough brain power (this took a while), I sat down and listed out all the signs and symptoms I was experiencing and all the things I had found that helped ease them. I then listed it out on a rough scale from 1-10, symptoms on one side and things that might help ease them on the other.


This was great on the days when I couldn’t remember what was working, and it was a useful tool for my friends and family too as it gave them some things to suggest if they saw me suffering, and some suggestions for ways they might help.



Stress

Stress is by far the biggest cause of backsliding. If you get wound up by the whole ordeal (and you will, I know I still do from time to time) this will stress you out, chew up your energy and wipe you out. Stress on any level is exhausting when you’re recovering from a TBI, be it physical, mental or emotional.


For me keeping my sense of humour helped. The days I could laugh at myself and the state I was in I did better and bounced back quicker from set backs than when I took myself too seriously and got wound up.


It’s going to happen though - TBI recovery is a frustrating and often isolating process. There will be days when you lose the plot and just stay in bed and cry all day, or spend the day agitated and furious over the whole thing. That’s ok too, it’s part of the process. There’s nothing wrong with a good wallow every now and then - the trick is not to drown.


If you have one of these high stress days - for any reason - it’s important to cut yourself some slack. Make sure you schedule yourself more rest stops over the next week or so and ask for help! Even asking someone to come and give you a hand with dinner or the house work will make a difference.

The Rollercoaster of Recovery and Relapse

Try to keep in mind that recovery from a TBI is not a straight line. It’s up and down. You might have a good day, or week, or month, or even year, then back slide and be struggling again. The hard part is remembering that this doesn’t mean you’re not still recovering. Remaining objective can be a real mission. It’s ok to back slide.


As you get better you’ll push more and do more things, then you’ll need to find a new balance again with your new energy levels. When this happens it’s easy to forget how far you’ve come and only see the latest slip. Keeping a diary or a record of your progress can be helpful here, as can friends, family or therapists to help give you some perspective.


If something comes up that’s a significant stress either physically, mentally or emotionally- work, an injury, personal matters - this puts an added strain on your brain and your energy levels and you’ll have to pull back on things and add in more rest time to rebalance again.


It’s a constant balancing act. What worked one week may not be as effective the following week. It’s easy to get frustrated and feel like you’re not getting anywhere. But stick with it! Keep tracking how you’re doing and keep looking back at where you were.

You will get better, it just might not be as quickly as you’d like.

Explaining Your TBI

This can be really hard. Unlike many other serious injuries, you often have nothing to show for your injury. No bandage or cast, no physio tape, no limp.



Communication is key. Having a really good talk with your family, friends and employer or work mates can make concussion recovery much easier on you. It’s a confusing time, for you and for them. You’ll be struggling to figure out how you’re doing on any given day of the week, and they’ll be trying to figure out where the old you went and why you’re acting so erratically. They won’t have any idea what’s going on for you if you don’t sit down and try to explain it to them.


I found my sliding scale of concussion really useful for this. Once I explained via a personal blog post what concussion had been like for me, I used that and my sliding scale to recruit help from family and friends. It gave them some insight into what I’d been going through and enabled them to see that I wasn’t being difficult on purpose.

It also gave us a chance to discuss ways they could help support me - and man did I need support! From things as simple as dropping meals around or just checking in to see how I was getting on, to dropping in groceries or acting as a taxi service. It all meant less stress for me and made my life and recovery much smoother.

A Note For Support People

They’re not doing it on purpose! This is not an excuse for any kind of bad behaviour, but TBI makes everything go sideways. Some days they may feel like they have three people in their head at any one time and no idea who has the wheel today. They’ll be forgetful. They may be emotional - upset, angry, frustrated. They might not make any sense - but be totally convinced that they’re being logical.

They might agree to do something or go somewhere, then realise that they just can’t.


It’s not you.


Try not to take it personally.


Don’t forget you can ask for help too, going through concussion is not easy, but it isn’t easy supporting someone through it either. You’re allowed to ask for help, and if it’s too much and you can’t that’s ok too. You can tell them this, ask for space, or suggest somewhere else they can go for help.


If you feel you can, keep an eye on them - they may not always be able to see when they’re slipping. Suggest they go take a rest or eat something. If you can, offering to cook healthy meals or help out with housework or groceries can be a huge help. If they have kids offering to take the kids out so they can get some peace and quiet can be a life saver.


But ask them! Have a chat, if you want to help sit down with them and ask them what they’re struggling with and what they need. If you can’t that’s ok, you can help by finding someone who can or by suggesting other ways you might make their life easier for a bit.


Be aware that some people may be embarrassed by what they are going through so if you do decide to talk to them about it, tread lightly.

More Information

If you want more information there are endless sources for you to delve into. Try a search at your local library or check out some online resources, the following are good places to start


https://www.brain-injury.nz/


https://neurological.org.nz


https://edu.cdhb.health.nz/Patients-Visitors/patient-information-pamphlets/Documents/Recovering-from-Concussion-237717.pdf


https://www.health.govt.nz/your-health/conditions-and-treatments/accidents-and-injuries/head-injury-and-concussion


If you’d like to read about my personal journey through TBI, you can find my blog about it here


https://wingingitsince87.wordpress.com/2019/03/31/concussion-a-guide-to-my-current-crazy/


If you want to get in touch and chat about TBI, please do! I have talked to a crazy number of people about this since I had my fourth concussion three years ago and I am always happy to pass on what I know.


If you’d like to include acupuncture as part of your recovery plan, get in touch and we can discuss that or you’re welcome to book yourself in online. It helps having someone in your corner for this, and having gone through it myself I can understand where you’re coming from.





Are you recovering from a TBI? What works for you? Let me know in the comments!

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