It’s a lonely, confusing and frustrating world after you’d had a brain injury. You become someone new; someone you don’t know or understand yet. You have to forget the person you used to be and enjoy the person you’ve become, but this is not as easy as it sounds… It’s a constant struggle.
It’s important to talk so that you can understand and move past these feelings. 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.
Be patient with yourself
“Why am I finding simple things so confusing?”
“I just want to be me again.”
Thoughts like this will go through your head for months or sometimes years after your injury. That’s the weird thing about brain injuries… Everyone recovers differently. There’s no set rule on how long it will take or how hard it will be which is why you have to learn to be patient with yourself. Yes, simple things are more confusing but at least you can still do them. It just takes longer. Try to accept this and see the positive side of things.
Embrace the new you.
‘Celebrate your personal victories because no one else understands what it took to accomplish them.’
Write things down
Memory problems are very common after a brain injury so it’s important to 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.
I cannot stress this enough. Rest and sleep are so important after a brain injury, especially in the early days. You may also suffer with fatigue, especially if you’ve had a traumatic brain injury (TBI). Fatigue is one of the most common problems people have after a traumatic brain injury. As many as 70% of survivors of TBI complain of mental fatigue.
Common symptoms of fatigue that I and many other brain injury survivors have:
- Stopping mid-sentence because you’ve forgotten what you’re talking about. If you’re really fatigued, you’ll be unable to say words or you may hear words in your head but they don’t come out right when you try to say them.
- Muscle ache: Your whole body aches, feels heavy and like it’s made out of rocks.
- Noise sensitivity worsens (the auditory system becomes very sensitive to noise).
- Having 8-9 hours sleep and feeling like you’ve only had 2-3 hours.
- Everything slows down around you and everything you do feels slow motion.
- Brain fog.
- Headaches worsen.
- Words or voices becoming jumbled (like they’re all screaming inside your head) when you’re trying to read or watch television.
Plan your life around fatigue. As much as you may not want to you have to.
- Don’t try to ‘power through’ this only makes fatigue worse.
- Don’t overwork yourself.
- If you know you have a busy day coming up spend the day before resting.
- If you’re doing something in the evening have a nap beforehand. Spending the whole day without a nap will exhaust you later.
- If you feel yourself getting tired or any symptoms starting take a nap. If you’re unable to sleep, laying down in a dark and quiet room will still help.
- Why not keep a fatigue diary? Write about your day and if you got fatigued write about the details of when or how that happened. This will help you learn more about what makes you tired and you can try to make changes.
Train your brain
Try to keep your brain active if you can. Do crosswords, word searches, board games, jigsaws or sudoku (if you know how!) Living in a world surrounded by technology there are also some great apps for brain training. If you search ‘brain training’ on your app store you’ll find loads!
If you’re working tell your employer
I’ve had many jobs since my brain injury. In my first job I mentioned my brain injury in a conversation as if it was nothing. Please don’t do that, it doesn’t help at all. I did that before I had seen an Occupational Therapist so I had no idea what had to be done in that situation.
Speak to your doctor before you return to work. I started to work (in a bar!) two months after my brain injury because when I left hospital I was given no help. I honestly thought I was better… Anyway, this isn’t a post about that but I would like you to learn from that slip up.
So… How to tell your employer about your brain injury?
It can make you very nervous having to tell a stranger about your injury but the longer you wait the more nervous you will get. It takes over your thoughts at work which can sometimes mean you’re not working as well because of it. The best advice I can give here is to tell them as soon as possible, you’ll feel so much better when you do.
The best way to tell them? Write a letter. This was advice given to me by my Occupational Therapist, it gives them something for your work record and takes the pressure off you having to explain everything there and then. In the letter say you’ve had a brain injury and describe what you struggle with most. Then explain how they might be able to help accommodate those difficulties and invite any questions that will help to open up a comfortable conversation, this will help them learn more about your injury and the support they can provide.
This may all sound rather daunting, it certainly was for me. You don’t have to worry though because under the Equality Act 2010 employers have a legal duty to make reasonable adjustments to the workplace for a disabled employee.
There are so many difficult things to face when you’ve had a brain injury but I hope that some of these tips will help.
Do you have any advice?
Would you like to share your brain injury story? You can do so here
Read brain injury stories from other survivors here