PEARL’S BLOG..............
Living with a brain injury
I wrote this blog from a personal view as someone living with a brain injury. It is just my own thoughts on what works for me. I cannot say what might work for someone else – we are all different (see point 11).
- Get on with it – if you think you can do something, try and do it.
- Don’t be afraid of failing because if you don’t try you will never know if you could have done it. Failing to do something isn’t always a negative – it helps you push yourself and find your boundaries
- Keep trying (even if that means keeping on failing) – it might just take longer but also remember that sometimes there are times will have to give up on something and that is OK, as long as you know you have tried. You can always come back to things in the future if you want to.
- Remind other people what it is like to have a brain injury. When you are doing well people can sometimes forget how it affects you. In a way this is good because they are seeing ‘you’ and not the brain injury but you still need people around you to recognise what is difficult for you so they can understand.
- On the other hand don’t put everything down to your brain injury – sometimes it might just be you being ‘you’. This goes for other people as well – remind them that not everything about you is about the brain injury.
- Accept that tiredness is something you may have to learn to live with and learn to adapt your plans if you have to. If I have made arrangements to be somewhere at 8pm I know I may have to go to bed for an hour or so in the afternoon or I will end up on the floor by 9pm
- It’s OK to be upset about what you cannot do now or how life has changed – you are human, these are human emotions, you are going to have days like that and to be honest there is a lot of bad things out having a brain injury – it can make you feel rotten physically, emotionally and socially. So yes, you are allowed to be upset.
- Sometimes people say things that might be patronising or hurtful but they don’t realise it. Accept that happens and gently remind people not to do it. Use humour , I find that helps.
- You might be in a situation where you feel someone or something is to blame for your brain injury – this may be true but focussing too much on the cause can just make you bitter. Blaming yourself for the brain injury, even if it came about as a result of your actions, isn’t helpful either – you have to live with it, that is hard enough, blaming yourself or someone else on top is even harder.
- Come to terms with the fact that you may need help and having help is OK – it doesn’t make you stupid, childish or less of a person. For example the ideas in this blog are mine but my mum helps me to write them up and edits them. This is because it would take me all day to do it myself with my memory issues, concentration, tiredness and visual loss. I probably could do it myself if I really tried but it would wipe me out so I use my mum’s skills to help me get my ideas out there and explain them clearly. That makes me sensible and smart in my book.
I am going to add a number 11....
11 Remember – everyone is an individual and everyone’s problems are different, from the severe to the bare minimum, our social circumstances are different as well. I can only talk about my own experience of brain injury. I cannot tell other people how they should be. I am not paralysed, I have difficulty finding the right words sometimes but I do have words, I can turn my back, walk away (albeit in a wobbly way), I have my own space that I can retreat to if I want. Not everyone can. I also have a fantastic family and friends. I can’t put myself in the shoes of someone else – all I can do is be the best me I can be as I am now and that goes for everybody regardless.
PEARL