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Blackbird fly

Happy 2014 everyone!

In the time since I last wrote I’ve grown another year older and experienced another turn on the merry go round of mental health. I have been pondering this post for a few days as there were a few topics I could have written about and seeing as though I’m kind of on an upswing right now it’s often harder to write about the BAD THINGS so I thought I’d look at a subject that has come up many times, not only to myself but a common story heard across the board from TBI survivors. It is ‘things I was/was not told about TBI when leaving hospital’ AKA

the listThings I was told when I was in hospital

You are in hospital
You have had brain surgery

and erm…… that’s it!

Things I wasn’t told and would love to have known in hospital

What had happened to me
What my operation consisted of
What healing FEELS like (that zaps, tingles, aches, tenderness and tightness are all normal)
That depression will frequently swing you by the ankles to the edges of your mind
Ditto for anxiety
That you WILL grieve and that you should let that happen (crying every day is ok)
That you will experience fatigue like you’ve never experienced before (think batteries out and staring at the wall)
That you will be in and out of your GP like a demented jack in the box convinced you are sick sick sick
That you wont sleep properly and dream for MONTHS
That it may be worthwhile getting a hormone check as your Pituitary gland may go wonky
That you will feel very isolated and lonely
That it takes an inordinate amount of time to heal
That there is a very capable and amazing Brain Injury team you can access via the good old NHS (I found out myself after struggling for months with all of the above)
That you can access Brain Injury Matters for all manner of help

but most importantly that all of this is NORMAL and YOU WILL BE OK eventually (I can’t state this enough!).

This is just my list, there are many people with similar lists, they may be longer or shorter or contain a myriad of other stuff. The thing we all seem to have in common is we knew NONE of this as we embarked on our new journeys. I’m not writing this to scare fellow TBIers, I’m writing this to prepare you. To show you the reality and enable you to get your tool kits ready. I’m lucky to have an awesome and understanding GP who sails through this with me. A great psychologist and assorted others through the Brain Injury Team. My point is, if I had been told even just some of this on release I would have maybe dealt with things easier and they wouldn’t have reached the boiling point they did. I really do think having Brain Injury survivors in hospitals to talk to patients, to put together an essential ‘survival’ leaflet given to people on their way out of hospital would be an enormous help. I know Brain Injury is different for everyone but something just saying you MAY experience these things is useful.

I don’t want this to be just a negative post though because there are positives, like being eternally grateful for the surgeon and the subsequent stream of help via health professionals I’ve had since. But more importantly the lessons, the things that can only come from something like this.

Lesson 1

You reach a stage where it does no good to talk and think about it anymore, this is a good stage, it’s a moving forward stage and it’s a great feeling.

Lesson 2

I learnt just how strong I really am. You get many points where you feel your reserves are gone, the battery is dead and then from nowhere an extra tiny bit of ‘something’ gets released and you get through whatever it is that is making you want to curl up and go away. This is endless and boundless and is your greatest ally. It’s also something I am immensely proud of, strength and courage are not to be underestimated and even when you don’t feel strong and courageous – YOU ARE!

Lesson 3

There are certain things that just don’t matter anymore. They will be different things for different people. But I no longer worry about money or status or careers. They are piffling little insignificances and I feel liberated as a result. I know what I DON’T want anymore.

Lesson 4

Life is ultimately pointless. It really is. Honest.

But the difference between worrying about that and accepting it with a smile is THE most freeing thing I have ever gone through.

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Latch onto the affirmative

I’ve started going to a Brain injury Support group, its a small group but after the 2 meetings we’ve had so far its been a great source of support and gives me the chance to talk to other people apart from myself.

We were given homework after our first session to think about change. People often say after a TBI that they feel somehow different or that their identity has changed, we had to come up with 2 ways in which we have changed and 2 ways in which we have stayed the same.

I found this incredibly difficult, it would have been easy to reel off the negatives; anxiety, isolation etc but I wanted to try and find positive answers to this. If you’d have asked me a few months ago I would have said that everything has changed, I’m not the same person and never will be. But whilst reflecting on the question I realised something, the way I think about things may have changed, there may be a skew in most things I think and feel but fundamentally, deep down, I’m still me, I’m still Braingirl. Now this was a revelation to me because everything felt so, well, different.

One of the things  I settled on was the change in my attitude to what is important, I used to run around all over the place doing everything for everyone and never just take the time to ‘smell the roses’. But after a year of HAVING to sit with myself and be still, I now appreciate it’s the things in life you miss whilst rushing around that matter. Birds singing, rain on the window, love, friendship, you get a better appreciation of the simple beauty of life. It’s about filtering what is important and choosing what to get angry about. ‘Don’t sweat the small stuff’ is a cliche but it’s true. When it comes down to it does that red light or that person holding up the queue really matter? Truly they don’t. What’s the rush? Does it matter?

This train of thought led me to think about happiness. I’ve read a lot about gratitude and happiness during my recovery and I’ll be honest it was a bit of an epiphany. Most people think that if they line up the ducks as it were that they will somehow achieve ‘happiness’, as if it’s a prize at the end of the game. Be honest, how many of us say to ourselves “if only I can get this job/promotion/car/holiday, I’ll be happy” we all do it. But what happens when we get that thing we were aiming for? We might feel temporarily elated, satisfied but then the voice starts again, “I’ve got the job but I still don’t feel quite right maybe I need to buy a house”. So on and so on, life then becomes a rushed pursuit of something that we think is ‘out there’. I had an income, a house, a marriage, a busy social life but was I happy? No in all honesty, deep down I was not. I still felt on the outside edge of everything, never really fully engaged.  I’m sure there are many rich miserable people who can’t understand why the acquisition of ‘things’ hasn’t helped them. I’m not saying you cant be rich and happy, of course you can but it’s not coming from what you have it’s coming from within. Same goes for not having much either. I’ve got nothing anymore, I’m having to start again and I feel I can be happy with much less than I had

Let me let you in on a secret, a secret that completely changed the way I think. Happiness isn’t out there, it’s within us. Happiness is a frame of mind. If you constantly think sad horrible thoughts how do you think you are going to feel? That’s right, sad and horrible. I’m not saying it’s easy to attain because it involves changing a lot of entrenched thinking but it’s there ready to grab if you try. That’s not to say you will never be sad or scared again, you will because this is human nature and if you don’t get the bad how do you know what the good feels like?  BUT you will handle things better, you will be able to not let things consume you as much. You will see those thoughts for what they are, just thoughts and let things float by.

My good days are starting to outnumber the bad at last. The bad, when they are there, are very bad but they give way to better days of peace and acceptance.

I find myself wearing this more frequently

the bra of hope

Let me know your positive outcomes from what initially felt like the end of the world.