How I hit my head and went on a life changing journey
By Steve Callagher
The background to my injury.
In early 2016 I suffered a life changing injury when I was severely concussed following an ill timed rugby tackle by my Brother In-law at a family BBQ. What started as a bit of fun turned into an accident and has gone on to have a major impact on my life. After the tackle I spent the next couple of days clouded in amnesia eventually succumbing to the effects of the concussion while at work a day or two later when I collapsed in the foyer of a medical center I was working next door from. I barely made it there after my vision became very blurry and l started to lose my balance. I was taken to hospital by ambulance, and diagnosed eventually, with concussion. I was kept in Hospital over-night and eventually released sometime the next day. I continued to struggle through the following weeks with fatigue, nausea, vomiting, vertigo, amnesia, sensitivity to light, blurry vision, horrible headaches and sensitivity to noise. As the symptoms failed to abate I was soon diagnosed with Post Concussion Syndrome, a term I had never encountered and I began a very long journey of recovery.
4 years on from that injury I have had to make significant changes to my life due to the serious and persistent symptoms of that concussion. Unfortunately, the effects of the injury has led to me reinjuring myself 3 more times. The second concussion following particularly close to the first concussion after I returned to work too soon. Ironically, this was at the behest of a pushy ACC Case Manager and I was involved in a pretty nasty workplace accident not long after. This is very bad news for someone already recovering from a concussion. The two subsequent injuries has simply been from my new found clumsiness as a result of balance issues.
If you said to me 4 years ago that one day I would not be able to perform at my usual job, engage in my passion of long distance running or even drive my car long distances simply due to concussion, I’d have burst my sides laughing!
The ugly truth is that concussion continues to affect my balance, my memory, my vision and I have serious issues with mental/neurological fatigue. Concussion is often described medically as Mild Traumatic Brain Injury, but there is nothing mild about it and we all need to be very aware of the dangers of traumatic brain injury caused by concussion and ensure that appropriate and realistic rehabilitation goals are pursued.
Brain injury awareness week 2020 is dedicated to the issue of mental/neuro fatigue so I want to share my experience with that issue and share my learnings on how to better manage this very difficult aspect of brain injury.
The injury from concussion has damaged the neural pathways in my brain. These pathways have been finely tuned to serve my mind and body as efficiently as possible in response to a lifetime of growth, challenging myself, learning and good old fashioned everyday living. My brain and body used to do things very efficiently and automatically because of this. It’s entirely natural and what you do mostly, when you grow from baby through to adulthood. Background tasks you never think about because your body just does them naturally and automatically and mostly always has and mostly always will. Adjusting vision, keeping your balance, walking, regulating heartbeat, processing emotional responses, paying attention to your surroundings are typical of the natural functions that has been disrupted for me by concussion. Since the injury my brain has effectively been running on emergency back up and is making a huge intensive adaptive effort to compensate using the pathways that survived and also an equally intensive effort to relearn and rebuild shattered neural pathways to replace those that are missing. This is an inefficient state to be in and somethings such as simply maintaining my balance while walking and turning my head no longer occur as smoothly as before. I could do that when I was a toddler!
It leaves me feeling often like I have the flu, jet lag and the worst hangover in history sometimes all by 11AM when I have been awake for only 5 or 6 hours, and I usually have to go have a nap to reboot my brain! Try living like that when you used to spend all day quite happily slinging building materials around on a construction site for 10 hours a day 6 days a week and still had enough energy to carry on with life after hours! It’s a massive change and quite an obstacle to over come. But it seems it can be done…
The Brain is plastic….not oil based but human based. It can relearn and recreate given the right conditions.
I have been embracing the ‘What ever it takes’ philosophy and doing literally whatever it takes to help get better. The road to recovery is not uniform, what works well for one person may not work so well or even be appropriate for the next person and the people responsible for treatment need to be in this mindset.
If they are not, I do not work with them, I find people who are prepared to individualize treatment because its crucial to do so.
I say this because in my experience several critical factors of my injury were overlooked before the right people found them. Only then was it possible to begin addressing those issues affecting me.
In managing fatigue admittedly there is an element of trial and error. I have had some really good input and support from my GP’s, occupational therapists, psychologists, physios, specialists, neuro-psychologists and fellow TBI survivors. Some of the best advice actually has come from myself, friends and family and Brain Injury Waikato!
As I learned that fatigue can be highly unpredictable, combined with the input of those treating me I become more aware of the triggers that were derailing me. Eventually I was steadily able to work around them or avoid them completely if possible. Sadly, some environments that trigger fatigue are everyday situations like driving or being at the shopping mall or the supermarket. I find them HIGHLY fatiguing but have gradually learned valuable coping strategies to still be able to do at least somethings I need to without over doing it and paying the price of sudden onset of fatigue. It seems I find new triggers around every new corner, it can be surprising at times!
Other tactics that are useful in day to day management of fatigue.
Self-reflection via a daily diary of my activities helps with that and it also helps me see the things I am managing to achieve and progress in my recovery too.
I have focused on becoming as physically fit as I am able, this actually helps foster my physical capacity and endurance and underpins the healing process in my body too.
Inline with physical fitness, I have sought out the best nutrition I can access. From vegan to ketogenic there will be something there that works for you. Find it!
There is also a wealth of support information online. From valuable research by highly credible academic and medical sources and informative documentaries and personal accounts that are posted on youtube.com
I absolutely recommend taking a look in that direction.
Above all else I have found that meaningful rest is the most beneficial thing. Getting as much high quality rest where and when I need it is the key. When I sleep my brain is rebuilding and replenishing itself, so I try and master the art of good sleep. I have needed a few enhancements like sleeping medication and earplugs to block out noise that will wake me up. I have learned I will always feel worse without enough sleep and I do everything I can to get my share.
As I am continuing to recover, continuing with rehab and discovering my new identity post injury, I am really grateful for everyone who has helped me along the way. Accepting that I have changed at a fundamental level has been one of the biggest hurdles for me to overcome. From the outside unless I am walking a bit unsteadily or my eyes are rolling around when I am really fatigued I usually appear otherwise intact. Lately I am told I am looking much better than I have for a long time and that is good! It means progress. Because on the bad days reconciling that external appearance against a misfiring set of internal functions is very tricky to understand not least for those looking at me. I don’t quite know where this recovery will take me but I hope to carry on and regain as much capacity as I had pre injury as is possible. I have to do things in a different way now, I’ve learned that and it’s just fine with me.