8-14th May 2017: Mental Health Awareness Week 2017 and in a cruel twist of fate also the week I’m going back to see my psychiatrist. It’s a love hate relationship, I don’t enjoy going to see him but I do at the same time… I leave our sessions feeling refreshed. However, after 6 months of fortnightly visits I believe I’m better, so I’ll leave. Then something will happen that makes me realise I’m not. It’s a vicious circle.
Living with a brain injury is an ongoing battle, not ongoing for a few months or a few years but something I have to battle and live with for the rest of my life. I know I’m never going to be better and that this is the best it’s going to be. I came to this realisation about 2 years after my brain injury, it took me into the dark place. I visit the dark place quite often I’d say, I say dark place because I don’t like saying I’m depressed but in reality I probably am.
The ongoing battle affects all brain injury survivors
After a brain injury you become a new person, the old you is no longer there. You may have some of the same characteristics and hobbies but inside you feel different. You feel like something has drastically changed you, which of course it has but you find it hard to describe what that feeling is. This is the first part of the battle.
The next part is battling with the thoughts of the old you and why you can’t go back to who you used to be. This is such a struggle because you don’t want to forget, you still have memories from who you used to be and you don’t want to lose that part of yourself.
The next part of the battle is that at some point your physical recovery will stop and the emotional recovery is what you’ll have to focus on. You’ll have to learn how to live with the problems you now face because of your brain injury.
The most common problems after a brain injury are:
- Memory problems
- Chronic fatigue
- Headaches
- Noise sensitivity
- Language loss (Eg: Being unable to describe something even though you can picture it in your head)
- Speech problems
- Unable to concentrate
- Unable to multitask
It’s exhausting, both emotionally and physically to plan your life around these problems. It’s even more exhausting when you’ve worked so hard to plan your day but the plans fail because your brain decides it’s going to have a bad day.
Life with a brain injury truly is an ongoing battle. Don’t worry I’m not going to leave you in the dark place, I have some advice for you!
Talk. I cannot stress this enough, it’s so important to talk. Whether it’s talking with someone you love or your psychiatrist, saying something is better than not saying anything even if you only say a few words. If you’re not ready to talk why not start a diary? It’s a great form of therapy; just start writing and the words will flow. You’ll feel so much better afterwards, like a weight has been lifted, and when you read it after a few months or years later you’ll be able to see how far you’ve come.
In the early days you’re going to notice your recovery a lot more than you are in the later days. Don’t let this upset you and don’t give up your recovery… It’s still happening it’s just slowed down.
Don’t ignore the problems you face because of your brain injury, you have to plan your life around them. I know you might not want to sometimes but you have to because it only makes things worse if you don’t.
Be patient with yourself. There’s no set rule on how long recovery will take or how hard it will be, which is why you have to learn to be patient with yourself.
Write things down. By things, I mean everything. Everything that you know or think you’re going to forget if you don’t write down. If you’re unsure of what I mean by everything here are a few examples of what I’ve previously written on my lists:
- Post letter
- Move wheelbarrow
- Light fitting for spare room
- Collect prescription
- Buy bras
- Take things to charity shop
- Book vet
Rest. I cannot stress this enough: Rest and sleep are so important after a brain injury.
Never give up the battle. It may be ongoing but you have to remember what you’ve survived and how strong you are because of this. I’ll leave you with this, it’s something I found on Tumblr a couple of years after my injury. I feel it’s such an important message and should be shared with all brain injury survivors:
Celebrate your personal victories because no one else understands what it took to accomplish them.
Hi, I am in that place at the moment, it’s been 10 days of fatigue, the dark place.
Today I started to feel differently, maybe I am all cried out for now , and I have slept and rested a lot. I don’t why I arrived in that sad place again, maybe it’s because I have realised from a medical assessment, how much support I need and how I’m not doing as well as I thought.
I’ve got good at managing my poorly brain, good at carefully planning every day events, good at list making and arranging lifts and support for appointments. You take all that away and I am still in recovery and have a long way to go.
I am seeing my neuro psychologist next week, when I will present my thoughts on all of this and ask why? Why do I end up in this dark place again? I try hard, I am usually positive, yet this brain is letting me down.
I know he will turn the tables on me and ask me what has happened to me, I will respond ‘I have had surgery to remove a large brain tumour’ and then, I will start to see how far I’ve come, how brave I have been, and all the achievements and victories I’ve gained. I will realign my thinking, and try to stick to that, until it becomes a habit and I will be able to avoid the sad place more.
I think getting ‘talking help’ is essential, it’s part of the medicine a poorly brain needs. So a shout out to those who talk goodness, kindness and facts into our poorly brains ?