Living with a brain injury..

 

I’d be lying if I told you life was easy, that I’m fine or even my usual saying “I’m getting there” because half the time I don’t know where ‘there’ is or even how I feel on a daily basis. I think as time has passed it feels as if I am drifting through the days, weeks, and months without any purpose or real change. I am aware that part of my recovery is “to get better” and compared to where I was its huge, but it doesn’t mean that it’s over or it’s coming to an end. My condition is just a constant and I think that’s what scares me the most and that nothing is certain anymore.

 

When I get asked how long I have left of being ‘ill’ (i say ill, i am not ill i have a permanent injury but it’s what people assume i am), how long will I continue to have treatment for, when will my speech return to ‘normal’ or even what is my final outcome, I just wish I could turn around and say “I only have two weeks left and it will all be over”, but I have learnt very quickly that there are no exceptions or time frame. It is what it is and you have to just go with it, as awful as that sounds. The difference with my injury or any form of trauma to the brain is there are no time limits and unfortunately no rulebook for how a survivor’s individual recovery can look.

 

Adjusting

 

I’m currently adjusting to a life that is not what I know as normal, and certainly not where I thought I would be at 29 years old. It’s hard not to mourn for the girl I once was, my old life and the things you & I would take for granted like driving, going to work, eating my favourite food and being independent. It’s hard to not feel ‘robbed’ of my old life however, I have to be more positive than that and I guess it is more like being cheated, of course I wish could turn back time! I do feel though I have been put on this path to help others, to share my experiences and use my strength to support survivors in the same position as me. In some ways I have accepted I will never be her again in other ways I know I am still searching with hope that there is a glimmer of the old me around the corner… even if at times it means I pretend.

 

Emotions

 

I am completely numb. I have lost the ability to feel any kind of emotion. I have turned to creating my own pain through tattoos and piercing etc to try and create something that will make me “feel”. I am constantly hovering over my self-destruct button and flirting with the idea of man-made pain.

It’s hard for you to comprehend my exact feelings when I say I feel empty, but that is no exaggeration of how I feel. There is nothing.  I feel like I am looking from the outside in at a shell of Zal. I look the same, my hair, face, make up has not really changed but I am hollow like a wooden Russian Doll. I know those words sound dramatic, and I really wish they were made up, but my emotions and the feeling I have towards them are just numb, I can’t understand what’s real and what isn’t.

I spoke about how I felt to other survivors while I was in hospital last week and I know Im not on my own in how the signals to the brain react. Speaking with other survivors has two sides to it, one is knowing you’re not on your own and others feel the same, it comforts you! The other is that constant nagging feeling, will this ever get better or easier, who knows? I suppose it’s the same as will I ever get my taste and smell back? Or the urge to ever actually want to eat? I shouldn’t be so hard on myself, but it’s not just me asking these questions, it’s the ones I face every day from people that ask about the after effects that get me down.

 

putting on a mask

 

People that surround me only see the fringes of how I feel I’ve adjusted my life, I’ve learnt to put a mask on and hide the pain that I feel, I believe I’ve allowed that to happen with my false advertising of the words “I’m fine” or “I’m getting there.” I’ve learnt that it’s easier to fight alone than with an army, and I think that’s because the only person im fighting against is my former self.

I’ve learnt that if I allow myself to laugh a little more it hides the tears that once would fall. When I spend time with friends it allows me to be, in some kind of way a normal 29 year old, it hides the fact that right now my life is in limbo, and by trying to socialise or do anything but my rehab, I feel like I can pretend to be someone that is ‘normal’. I think that I should be allowed to try and be normal, yet I get questioned a lot for this! I pretend every day that I am still that girl, I try so hard to keep busy because it distracts me from what is actually happening, I have come to the realisation that I am two very different people, the girl that had the accident and the girl that is trying to deal with it and all its repercussions.

I’ve come to realise I am able to separate the two different sides of me, on one hand I am able to talk openly about the accident in a matter of fact way, it’s only when my brain makes the connection that I feel I’ve been hit sides ways and realise it’s me I am talking about. That’s when I first was able to cry for the first time about what has happened.

It’s only very recently that the missing link from one side of my brain to the ‘processing’ side (my frontal lobe) made that connection and I understood that this isn’t a story, its real life and it’s my life im talking about.

I know that it’s not easy to understand, how is it possible that I can’t process what’s happening. The only way to simplify it is to imagine when you have a dream, you’re floating above the dream – this world doesn’t feel real. That’s me. I don’t remember the accident at all, I just woke up unable to read, write, talk, and walk. I’m learning all of these basic human attributes all over again. I still struggle to walk, talk properly without a stammer and rest when my brain fog (fatigue) sets in, some day’s I feel amazing, don’t get me wrong my amazing is at best I would say around 60/65% if im really lucky I can be 70% and other days im barely making it to 10%.

I am without a doubt having to start again and rebuild or re boot my emotion and this is up there with one of my biggest challenges I’ve faced with my recovery.  I do feel like that I am as far away as I can be from what I once knew, but I know this has to happen for my wellbeing and health to improve.

 

 

How do I know what is normal and what isn’t normal?

 

I’m not sure I’ll ever truly be able to answer that question. I suffer hugely with anxiety to the point it makes me physically ill. A close friend asked if when my anxiety is at its worst is it my brain trying to teach me certain emotions, who knows, but if it is true learning how to manage and relearn those emotions comes at a cost.

In time im hoping that I will learn to understand, right now I know the bubble that im living in has helped me to handle the new everyday life I face. I’ve built up a barrier, which allows me to tackle the struggles I face every day.

However when I am faced with something from the outside or a new situation I physically and mentally shut down.

Being frustrated is tough for anyone but when you have a brain injury there is no reasoning, you can try to explain the challenge to me to try and help me process it or even try to help me with why im frustrated but it is unlikely to help and half the time I don’t know why I am so irritated so it doesn’t get easier.

I can’t just ‘snap out’ of a mood, I can’t change how Im thinking as half the time I don’t know what or why I am feeling like that, never mind what I’m doing. The overload I experience only becomes apparent when I can barely function or stand and my mum has to tell me that I need to go and sleep.

 

questions….

I know people on the outside question how I can’t understand my emotions, how I am actually doing, if I am ill and where my recovery is at because all they see are the photos of me smiling or laughing with friends. What they don’t see is the exact reason why this blog takes me so long to write, the black outs, the seizures, the not wanting to fall asleep at night because of the severity of my episodes and how scary facing this alone is. My health took a backwards step over the last year resulting in increased episodes, black outs and seizures.

Some days my fatigue is awful, when I say the words ‘fatigue’, I can hear everyone say “I get tired too” but the difference is with mental fatigue you can’t control it. My legs turn to jelly and the pain is like no other I can explain, I can’t walk. My speech is slurred and often I can’t find the words I want to say. My brain doesn’t talk to my body so half the time I forget how to use my body parts, when I have these episodes my mood is so awful that I don’t realise how I react to people or certain surroundings and my mum says she feels she is on eggs shells because she doesn’t know how to handle me. How awful does that sound, I make my mother feel uncomfortable because I can’t control my emotions or body.

It’s made me really question how this has really affected my life and others around me.

On paper during the 12 months from April 2016 to April 2017 nothing on paper changed, I still continued to manage my life around my head only doing what I think is possible and not trying to push to extremes. This has taught me that this isn’t going to get any easier or change anytime soon and that is ok, I am just thankful I have the ability to keep moving forward however slowly.

 

I’ve never felt uneasy about talking about what happened, but recently in the last two months there has been three occasions where I’ve spoken openly about the accident, how it happened and how it’s effected mine and everyone else’s lives around me.

I’ve been able to cry for the first time about what has happened and I have feelings that i never thought i’d have, I feel sorry for that person and that person is me.

I shouldn’t put her down or knock her progress because it’s an amazing achievement and one that I need to remind myself “look how far I’ve come” especially when I am having a bad day or episode. There will always be that side of me that will question why is it so hard and why me?

 

rebuilding the new you

 

After you start to come to terms with your brain injury, firstly you are so thankful and grateful for what you’ve been through and survived! This then is coupled with the frustration and denial as it becomes apparent that the life you have has changed forever.

Whether you like it or not there isn’t an easy way out, and you have to push yourself to accept the “new you”. The sooner you accept the sooner you can rebuild your life.

How do you accept a situation that you have zero control over? It will forever be something that I will always question, I am not going to forget the former me as she has taught me lessons I can use moving forward but I have to be happy and accepting of my change.

Someone told me that they only know the Zal I am now not the Zal I was before and they love me for who I am not what I was. So I need to be thankful that im still lovable and I need to learn to love me which I feel will be up there with the hardest challenge im facing.

 

XXX

 

6 thoughts on “Living with a brain injury..

  1. Jude says:

    Well to love you is not a challenge you are a wonderful ,kind, caring young beautiful women with a brain injury and you are and have helped me in some of my very dark moments and thank you for being you ❤️❤️❤️

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