If you or someone you know has suddenly found themselves living with a brain injury, or perhaps it has been months or years, you will know that some things can feel different. The mind is our very being, it is us behind the vehicle that is our body. And just like a broken bone will always have healed marks, the brain can be left with hidden disabilities.
It can be distressing, challenging you and your loved ones’ idea of who you are. What was once natural to you, may now leave you feeling anxious, like hanging out with friends at a party or being part of a sports team. Loud noises may become unbearable, socialising becomes stressful, and everything else becomes tiring or overwhelming. Even the very idea of it may be too much, causing you to isolate yourself.
“I remember saying to my neuropsychologist once that I just want to be the carefree spirit that I once was. I want to be that really laid back, spontaneous person. It’s such a difficult place.” - Mark
Making Adjustments
There are typically two approaches to a challenge that both lead to the same scenario. One is never trying, never going to any parties. This, of course, will not solve the original problem and is resigning yourself to not enjoying your time with friends or family. The second, equally defeating, is pushing yourself hard. Racing to the centre of the dance floor, amongst the strobing lights, and the tightly packed crowd. And just as hard as you come in, the crash becomes even harder.
So how do we combat this? By taking one small step at a time.
“A key thing to living with a brain injury is understanding and knowing what your limitations are. What you can cope with and what possibly you can’t.” – Jules
Sometimes, you may not even notice yourself struggling which is why it is more important than ever to listen to those close to you. Accepting that you are struggling is hard but necessary to then make those small steps. Understand your limits and know your triggers. Only then can you work past them, bit by bit. Party too loud? Take a step back for a moment. Having a brief reset before going back in is better than losing the will to do so.
“I had to accept I can no longer do that without taking a rest or having a consequence after it.” – Mark
Remove the Triggers
Like standing in a minefield, one wrong step can set you back. But once you see the triggers, it’s easier to avoid and even remove them. But how do we identify what our triggers are? By keeping a diary! A fatigue diary to be exact, which you can download here. Write in the moment what is getting to you, no matter how small, and see over days, weeks, or months the repeated patterns. Soon, you will have a clear view of your life and the triggers you face.
Maybe you find that crowds are not your thing, which may never have been a problem before but is so glaringly obvious now. So, what do you do? You understand the trigger, and make adjustments to eliminate the problem. Maybe standing to the side, taking breaks, or avoiding the crowds entirely but enjoying the party elsewhere. Create realistic goals, take small steps towards joining crowds and feel more comfortable. Remember, small steps to feel accomplished about and not large steps to make you feel discouraged.
“Focusing really on what you can achieve that day and not what you can’t because that’s where you want to put your energy. Planning that day and looking at putting those rest periods in has been phenomenal.” - Jules
Feel Good About Yourself
At first in your recovery journey, you can be quite hard on yourself. Not seeing the triggers, the red flags, ignoring the distress you feel that wasn’t there before. But as you take those small steps into who you are now, don’t compare yourself to others or the previous you and instead of feeling disheartened; feel good. In fact, feel great about yourself!
Just as you document all the bad days, and the triggers, take note of the accomplishments. The successful days. Recognising when to step back, when your mind and body are taking too much, but also when you improved and met your goals! As the word “journey” implies, it’s a long process. So, take in the good days and feel good about yourself!