Following a recent event, I feel I need to explain a bit further the link between brain injury and emotions. You all know how much less patient you can be when you are tired right? Perhaps you can be more irritable, less tolerant, get angry quickly, feel low, struggle with motivation, burst into tears more easily and let’s simplify things by saying...feeling as though you have less control over your emotions in general right? Well let me reassure you by saying that you are perfectly normal as several research have shown that fatigue directly impacts emotion regulation and how efficiently the brain operates. Now that we have established that we’ve all been through this before, let’s look at how this picture changes when you have to factor in brain injury?
Strike 1
The first thing to consider here is that the brain injury may have compromised the integrity of the emotional control centre of the brain i.e. the limbic system. If part of the limbic system has been damaged, regulating emotions can become quite challenging and lead to mood swings and emotional lability.
Strike 2
The other aspect to consider is that emotional lability may have crept into the picture as a secondary effect of the brain injury. The limbic system may be intact, however the survivor now has to deal with a range of frustrations, cognitive and physical changes that came into play following the brain injury. You can easily see how those life changes can lead to a roller coaster of emotions that they have to try to manage on top of everything else that is going on.
Strike 3
When you live with a brain injury, you are operating on a much smaller energy tank compared to everyone else. That means that you reach your critical fatigue levels much MUCH faster. As the energy levels drop, a range of Weird and not so Wonderful starts to creep in and emotions rumbling and fighting in the middle of your chest are often at the forefront of all the weird and not so wonderful.
I wanted to tell my friends: “Remember when your toddler was 2 years old and they couldn’t quite communicate, but you knew his behavior and emotions were all over the place because he was overtired?...Well that is ME right now. The brain just doesn’t have the mental capacity to deal with ANYTHING until it recharges.” But even then, just like a toddler, I couldn’t connect the dots or verbalize what I desperately wanted to say. Just a little frustrating to say the least.
Frustrations and fatigue can quickly become a catch 22 because they can take regular emotions to the next level. High intensity emotions (high highs & low lows) are physiologically very taxing on our whole body and when you live with a brain injury, you have to buckle up and be ready for this ongoing roller coaster. High intensity emotions tend to further deplete the amount of brain energy available to you and therefore have a direct effect on your operating center...the brain.
During the recent event that lead to this blog, fatigue levels were pretty intense. Nothing was operating as it should. My vision was distorted, I could barely string words together, everything was either going way too fast or completely jumbled up, all aspects of cognition were significantly reduced, my emotions were all over the place and my physical body was just so slow. I knew perfectly what was happening, I’ve been in that space so many times since encephalitis (e) and its token acquired brain injury (ABI). But apart from a few people that I can count on one hand, I think it’s fair to say that most haven't been privy to the full blown effects of how brain injury can affect me emotionally. I was far from my safety nest, far from those who know exactly what to do and say to get me through this rough patch and given my level of fatigue, I was incapable of articulating my thoughts and of sharing all of the above mentioned knowledge which was adding to my existing frustrations.
So the question is how do you escape this vicious circle?
Unfortunately, there aren’t any miracle pills here. First and foremost, the brain needs to recharge to have a fighting chance of regaining some sort of control over your body and mind. However, even though you are pretty slow and tired, you need to be able to escape that fight or flight mode in order for your brain to get the rest that it desperately deserves. I find that breathing exercises, meditation, stretching and colouring in can help reduce the fight or flight hormones that have gone a bit wild. Once I’ve achieved that, sleep is the main factor that does the trick for me. Talking to a few key people is always helpful to normalise the situation and get some perspective. I also regularly work with a psychologist to help discuss some of my emotions and establish strategies to best manage them. It’s a combination of many tools that I have learnt since e and ABI that allow me to regain control over my emotions. It doesn’t mean that it doesn’t go wonky from time to time, but I know that I also need to be patient and give things time as there is no quick fix with brain injury and its associated set backs.
My friends were very supportive during my recent emotional melt down, but at the time I remember being so frustrated not to be able to explain all of the above to them. The reality is that I knew very well what was happening, I knew I had lost all control over that Weird Wonderful Brain of mine, I knew that it wasn’t by choice, that I didn’t have any overriding power over that brain of mine, that I had to ride the wave like I have done so many times before, but deep down I felt misunderstood. I am hoping that this blog may be handy for other survivors to share with family and friends to help their entourage get some perspective on this harsh reality. Knowledge is power. Knowledge leads to understanding and feeling understood is such an asset to have when you are trying to get back up again.
No one had prepared me for this emotional roller coaster that is brain injury recovery. Perhaps no one could have fully prepared me for this either. To this day, it is the hardest mental game I’ve ever had to play. I’ve made a huge amount of progress and knowing that I can survive those hard patches make things a wee bit easier. I know I can do this...perhaps I’m slowly becoming a master at this very tricky game?!
I was 15 when I sustained my ABI. I spent time in ICU (3wks) & PTA (5 wks). I was to come home in a wheelchair. I suffered R sided paralysis & a severe speech impediment. My mother & sister were staying at the hospital with me.
I have had literally hundreds of real-life blessings. But do you want to know the principal one: not being wrapped in cotton wool! I was encouraged - thorn in ones side sort, to not ask. I was frequently told by my 15 month younger sister (who was my primary carer when Mum went back to work) to do it for myself (whatever it was).
Ofcourse there are deficits, like running/jogging; playing sport; riding…