The hardest thing about a brain injury, is that one clear moment changes all aspects of your life. Suddenly you have a distinct ‘before’ and ‘after’.
Dealing with a new reality
Maybe it’s stating the obvious, but a brain injury is something you have every single day. Every day is comprised of moments in which you get faced with your limits, have to make an adjustment in order to make it through the day or have to say ‘no’ to something that you used to do without a second thought.
I think that’s what makes it so hard for the people around you, to comprehend what it means to live with a brain injury.
Living with a brain injury
With a brain injury, as in normal daily life, you get some really good days and some really bad days, but you’ll have a whole lot of average days on general.
A good day for me is when I almost forget I have a brain injury, as I can do and enjoy whatever I want.
The bad days are when I have to face all my limitations and feel the loss of my old life again. During those kind of days, brain fog reigns. Thinking, speaking and walking all become a challenge and I just want to hide in bed.
The average days are somewhere between these two extremes. I can do things, but have to make adjustments. That might mean taking more breaks, cancelling an appointment or having to struggle more in order to verbalise my thoughts.
Also, you never know what kind of day it’ll be. Sure it helps if you get enough sleep, eat healthy, exercise and rest, but then you still can get a bad day.
This makes life feel more uncertain. Will you have a good day today? Did you take enough breaks? Can you stick to your appointments? And so on.
Finding a sense of control
As a result, the mental side of a brain injury can (at times) be really difficult. But as I’ve mentioned before, I don’t want my brain injury to define who I am. And I’ve learned that I can also influence the mental side of things.
How I think about myself, for example. Do I encourage myself or judge myself? Can I see the silver linings or only the things that need to improve? Do I focus on how far I’ve come or on the things that I can no longer do?
Which story do you tell yourself and what kind of thoughts linger in your mind?
Now it took me a while to comprehend this. In the beginning I was too busy being frustrated with the whole situation. All I could see were the things I couldn’t do anymore. All the dreams that I had to let go off. Less become my new identity. Less energy, less abilities and maybe even a lesser friend, colleague and family member?
And in all honesty, there are times when I still struggle with this. But, thankfully far less then before.
I realized that I can change my inner monologue. I can choose to think more positive and more kind about myself and my brain injury. And I do believe that I’ve gotten better at this over time.
Finding the right story
I now try to tell myself a positive story, instead of lingering on the frustration and sadness.
When something doesn’t work out, that doesn’t make it a failure. It makes it a lesson. It means I’ve learned something about my new normal which I can use in the future.
In moments of frustration or when facing limitations, it helps to look back at that first year. Maybe today something is beyond my abilities, but five years ago I wouldn’t even dare to dream that I would ever attempt something like this.
(Yesterday I hiked down of a mountain, really stretching my limit and I started to criticize myself again. But five years ago I couldn’t even walk more then five minutes. Remembering this, I suddenly felt incredibly grateful again.)
And every time you try to adjust your thought pattern, it become a little easier.
Still, when it’s just a really shitty day and life truly sucks, then that’s okay too. Tomorrow another day will come and all you have to do is to hang in there. That new day will come.
This mindset helps me to stay positive. So I’ll continue to to built my mental resilience. Hopefully practise makes perfect.
What is your view on this? Do you see the difference between the first year and now? Can you shift your thoughts to be more helpful and positive?
This is so true , describes my journey to a tee. Thank you for sharing. It truely has to be mind over matter or you won’t be able to move onward with your life, the new you, or your future. Baby step until you make it. Know you aren’t alone in your struggle’s. Others have and are facing these obstacles and challenge’s.
Great Post, it really sums up my thoughts. I would say I still struggle a lot with acceptance of living with a brain injury and how my life is so changed. The good days are more often, when I smile and achieve situations better and then I see progress. But then I am waking up the next day with that foggy head and managing every part of my day, some days are bad and I want to say no to everyone and everything, but I don’t, and I don’t know if this is a good or bad thing to do, but I still do things feeling uncomfortable and anxious, I know it will have a knock on effect and everything Is harder when it’s a fatigue shitty day. I am afraid if I don’t have a go then I will miss an opportunity to mend, or maybe cope better this time. I suppose it’s a fine balance all the time, somehow I think, I can beat it, fix it, mend it, even to my own detriment. Learning to be kind to myself and that it’s not a race or that this is as far as my poorly brain can go, is a massive lesson I am learning.
Thanks! And thank you for your reaction, very recognizable! I always fear that I take the ‘easy’ way out, if I have a shitty day and stay in bed.
Yup, a fine balancing act indeed. That is a massive lesson, but probably the most important one too, so good on you for learning it!! And thank you for reminding me as well. 😀 All the best and I hope that being kind to yourself gets a little easier every time you manage to do an act of kindness.