Advice on how to process and progress following an acquired brain injury is hard to come by. What should you expect? What will change and what won't? What pace can you expect to move at? Carina Barnett writes from experiences in the final edition of a three-part series from Mental Health Today.

Read Parts one and two here.

Brain Injury - a beginner’s guide

Whatever the cause of a brain injury, its effects are devastating.

Having lived with the aftermath of one since 2001 I have decided to write something I wish I could have read all those years ago. We could all have been more prepared for what to expect.

I can only speak about my own BI, which was acquired (caused by bacterial infection) as opposed to traumatic (caused by a blow to the head or similar). I know that I was extraordinarily lucky in my medical care and have managed to maintain my independence and recover as well as I could realistically have hoped, given my circumstances. 

Good luck in your brain injury recovery journey. Not all BIs are the same, but there are certain features which are common to many of them.

An ABC seemed an appropriate format. Since the BI has robbed me of much of my memory, I have had to re-learn many things and the alphabet is one of the basics we start with as children. I now divide my life into two parts – I almost feel as if I was re-born when I woke up on a hospital ward almost 20 years ago and everything had changed.

P is for Pretend

Just don’t.

If you feel too exhausted to go somewhere but don’t want to upset someone, just tell them you are tired. Be honest. Pretence will get you nowhere. "I’m fine" we say to each other, every single day. How often do we really mean it? Don’t pretend you remember something if you don’t. It's okay. Don’t pretend you will be fine with the TV volume up high and you are happy to stay just a bit longer if you are utterly exhausted. Don’t pretend. It helps nobody.

Q is for Questions

You are bound to have millions, so ask them. Keep a notebook and jot everything down. If you have a question to ask it is not a stupid one. Never. Ask it and there will be somebody out there who can answer it or put you in touch with somebody else who can. Not everything has a cut and dry answer, of course but asking questions and getting to understand your brain injury and speed of recovery gives you power and, hopefully, some reassurance. Don’t forget to answer them too. Truthfully. Truthful is the only way after a BI. My memory issues mean that I can’t always remember if I have told someone something so I can never lie. No bad thing.

R is for Reach Out

Reach out for help and support if you need it. You may have spent a lot of time in hospital and feel that everyone has done enough for you. This is just the start for you, though. Coming back into "normal" life was utterly bewildering and terrifying for me but I did not reach out, thinking I had been given enough help. There is so much you need so ask for it. There are organisations out there who specialise in head injuries so ask your GP to put you in touch with someone who can answer your questions, as GPs are not experts in them. Look for local groups or start your own. Contact the team you're being treated by.

You are entitled to help and support so make sure you get it.

S is for Should

This word "should" should be banned from the English language. It is extremely damaging. Being told you "should" be better by now or you "should" not have been rude to that child who just screamed in your ear is profoundly unhelpful. Being told you should do or like something after a brain injury, just because you used to do or like it is hurtful, to say the least. You don’t. It’s simple.

Some of us with a BI should, possibly, have died. But we didn’t and we are doing our best so please, just stop saying this word.

T is for Time

Don’t let others measure your time by their rules. If it takes you 5 years or 10 years to come to terms with a BI then it takes you 5 years or 10 years. Time is very elastic after a BI and the added confusion of memory loss can create a slightly surreal perception of time and the sequence of events. You have been through something huge so your brain will get better as and when it sees fit. Do nothing rash and don’t hurry. The day will come when you can tackle things, even if you find you can’t do them again the next day. Let your brain dictate the pace and do not rush. You will learn patience – it will be very helpful for you.

U is for Understanding

Understanding is what we crave after a BI: not sympathy, making allowances, or pity. Just understanding that this is new to us too and it isn’t always easy. There is no rule book and it isn’t the same as a broken limb. You can’t see the damage to our brain but it is just as real. Go easy on us.

V is for Voice

Use it. Kindly and wisely. You may want to scream and rage – and you will, sometimes. Fine, do that. But use your voice for kind words, too. Thank people. Thank your nurses and other people who have helped and supported you. Talk to people, strangers who are also on this tricky journey through life. Who knows who you might encounter? You have a voice and you can choose to use it to help other people who are going through this same experience. Your voice could really help someone else.

W is for Why

In the early, angry stage of my recovery I shouted "WHY?!" a lot – often into the waves as I thought about what had happened. Why me, what had I done to deserve a BI? One day you will find that you stop thinking about yourself so much and start to notice other people. That young man in a  wheelchair, another person with a guide dog, people living with disability and getting on with it. The person who serves you at the supermarket checkout may be going home to care for someone after their shift. You just don’t know. Then you gradually find that your question changes to "why not me?" and you know you are on the road to recovery. Bad things happen. We have accidents, we get ill. It’s random and we need to just deal with it. "Why?" is a perfectly valid question but it won’t always have an answer. Ask it, muse on it - but then move on.

X is for Love

Of life, of those who stay close to you, of the music that moves your soul. Let yourself be loved. Relationships can be badly shaken or even ended after a BI. Friendships change or fizzle out. Keep something or someone that you love close at hand, if you can. It will help give you purpose and remind you that you need to keep going. Most important of all, though, is to love yourself and make friends with this new person. You are going to be living together, after all. 

Y is for You

That, ultimately, is what it all boils down to. Your BI is unique to you but try not to be defined by it, hard as it will be, at times. This could be a chance to change your life radically – learn something new, change jobs, move to a different area, re-invent yourself. Try and turn it into a positive experience. Just look after yourself. 

Z is for ZZZZs

Sleep will be more important now. Fatigue is one of the most commonly cited side effects of brain injury. Your brain is working overtime so needs to rest more frequently. Don’t apologise for feeling tired. Sleep is hugely important at all stages of BI recovery so sleep when you need to.