Wednesday 30 September 2015

My hidden illness and living with it

Brain injury is one of the biggest worst hardest and most challenging illnesses I can think of.

From day one of my stroke I never realised the impact a brain injury would actually have on my life, 
I never even knew that a stroke involved the brain.

Why call the ambulance mum? Hospitals can't cure paralysis..


You don't realise until you have a face to face conversation and you start panicking with what to say how to say it and if what you're saying actually makes sense..

You don't realise until you get told to do something and you forget,
'Liz remember your tablets' 
Most important thing to remember and sometimes I still forget 

You find everyday hard, 

Fatigue is the worst part, 
I need at least 8/9 hours sleep a day or night,

Obviously my epilepsy is triggered by not enough sleep.

My brains still damaged but is recovering..

It's mad to even think that there's random cells in my brain that aren't connected,
What are they doing? Floating in my skull?
It genuinely makes me feel uneasy.

'So how do you walk on your leg if it's numb, what does it feel like?'
It's odd..
It's like waking up with a numb arm and not being able to process using it, I do it because I know that i need to walk to get on with my life.
I can't feel it hit or step on the ground, I can't feel it bend or when I lift it.


Walking upstairs scares me, when I see the first few steps I think 
'Shit, what if my knee just gives up and goes weak?'
 
My leg does this thing that I joke about when it happens;
It shakes so much that when I stand there it's making my whole body shake.

That's my brain doing that

My brain can't process busy situations, walking through town scares me but once again I want to go shopping..

I panic when I walk into a club, seeing everyone imagining what they're thinking, they don't know I have a brain injury..

They don't understand that I'm always living in a blur.

Everything's a blur,
I only recognise faces not people, if you've upset me before then I'll remember you.
If I love you I remember you..
But I can't put names to faces in my head..I

"Oh you know so and so did this"
Oh haha, yeah.. Wait who?!?!

My hidden illness involves mental health, 
Anxiety, depression, fear, self harming (sometimes).

My self harming happens only to my left side.

"Liz talk me through why you do it so I can understand"
"I miss the feeling of my arm and leg, for a split second I can feel it again.. And it feels okay"
My neuropsychologist looks blank.. 
I'm not surprised, she doesn't and can't realise how it feels..

My hidden illness creates my personality
I know I'll live with it for the rest of my life, regardless of what I do.

I get moments where even if people speak to me I'll assume everyone hates me.
"I know you don't like me, but why?"
"I do like you.."

In my head thinking;
They find me hard to read, how do I fully explain the extent of my brain injury it might scare them away..


I find opinions really hard to accept;
"If I were you I'd change this part of your work to make it a higher grade"
"Oh is it bad then?"
I'll walk away feeling like I've failed.
"Liz you're not fat you're just a bit bigger than you were"
'Oh so you think I'm fucking fat then?!'

Something I hate telling people but it's my blog so I kind of need to share it,
When I was younger with my kidney illness I gain loads of weight and then the steroids make me even larger.
I have stretch marks all over from weight I've lost then gained.

and I still have scars from self harming.

My life's a mixture of random emotions and tests of how to cope.

Paranoia being the worst part.

So don't assume I'm being blank with you, I'm dealing with a major brain injury and a lot of illnesses I can't cure.


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