Walking

Oh my god..

Those first three words that I think came out of my mouth when I took my first few steps, even now whenever I stand up after waking up I genuinely can’t believe I’m doing it.

I’m standing!
It’s actually really surreal to think that I couldn’t do it at one point,

Sometimes I do forget..

My leg swings and I do stop, people stare and probably think, what the hell is that girl doing?
Because I just stand and stare at my feet.. I tell them what to do, *move come on! Move..*

Some people ask
“So, where did it happen?”
I was lucky enough to be asleep..
but I feel for those who were awake walking around and would of collapsed, if that happens?
Paralysed.. unaware of why, how and in shock.

My walking will forever improve, I do walk to fast sometimes but I’m doing it and my legs are moving..

Paralysed..

I still technically can’t use my arm or hand ‘functionally’
Which is a regular occurrence for stroke survivors as it takes longer to ‘recover’

“Oh sorry!”
‘Nope it’s fine, I can’t feel it :)’
*the stare of confusion..*
‘Oh it’s paralysed, I can’t use it it’s numb’
It’s as if you’re holding a heavy weight..
sometimes I’ll find myself leaning to the left (not sure if it’s the stroke side effect)
Paralysed is when you sit on your hand for ages you pass the pins and needles stage and let the numbness stay..
forever

I’ve stopped with the whole ‘this is what happened crap’ as it’s so boring now.
Those who know me know, those who want to judge me can judge me and those who want to find out can ask..

Beautiful reflection..

“Okay it’s a 20 minute scan of your brain have you had one before?”

I just lay there still as a rock, gripping onto the squidgy button they give you to squeeze if you need help..

I had my second MRI to ‘check everything is okay’

The last time I was in this particular scanner was when I was oblivious to the world, exhausted, paralysed and terrified of what was going to happen next..

This time I knew..

‘You've achieved SO much!’
‘Look how far you’ve come’
and look where you are..

Exhausted from spending the day at university and spending my time working on my project about neuroplasticity..
*if it wasn’t for this reflection you wouldn’t of created such a fantastic project*

I was Managing to hold in the tears, I just lay there gazing into the mirror that showed a reflection of a dark room that once showed my; step dad, mum and numerous doctors terrified, anxious and some crying..
this time,
a nurse just eating a sandwich..
Oblivious to the fact I’d been through so much..

an MRI..
And the beautiful reflection..

Living with memory loss..

I’m sorry, can you repeat that?
Does that make sense?
Do you understand?

I’ve recently started adjusting to the fact that my brain injury includes a main factor; memory loss..

I find myself screwing up bits of paper that we’re once really helpful and important when checking my ‘notes’ in my phone it’s lists and lists of
‘What to buy’

Things you’d think a young woman would remember..

‘Foundation’

I mean, I can’t live without the stuff!

My memory is slowly getting better but is still affected and no one can help me gain it accept myself, so I shall continue to write numerous lists and take photographs of different stages of things I’ve done just to remember what to do and buy

Curious..

I know you’re curious
I can see
I can feel the stares
You’re all staring at me..

The way I walk and how my leg swings
I know I’m different

You’re just curious

You can stop to ask me
I really don’t mind
Just don’t stare
I can see you
I’m not blind..

Curious of my disability
Curious of my arm
I’m creating my own version of normal
And it’s taken a very long time
But I’m finally starting to feel comfortable and happy

So let me be.

Fight or flight..

I’ve only just heard of this term but it made me think of pretty much my whole life because of everything I’ve been through..

“How do you do it?”
“Oh my god, you poor thing!”

Excuse me..

I am a human being..

I could either sit on my ass all day everyday and give up on myself crying and feeling depressed
Or get up and realise I have got a life to live and lead

I understand it might be a different and difficult life and I will have hard days but that’s it

‘That’s life..’

What’s life without a fight?

*No I’m not going to have a physical fight*

When I feel down I think of all those LOVELY people who doubted me and that makes me realise I will and can ‘fight this’

There is no reason to be down because I’m so far into my recovery..

Life is tough

But it’s fight or flight

And I’m creating my version of normal

This is the fight.

Me and MY disability..

Everyone struggles, that’s normal..

And everyone who has a disability has different ‘symptoms, struggles,worries and so on..’

“But you’re not disabled!”

Hidden disability? Duh* (rolling eyes emoji)

People have this strange assumption that because I’m a young woman clearly looking healthy as I am capable of standing on my own two feet, that ‘I am not disabled, because oh yes;
Everyone that is ‘disabled HAS to be in a wheelchair’ *myth*

Life is full of judgemental people and people who make you feel really uncomfortable, I’ve really struggled with this since my stroke due to how people treat me..

‘I stood up and put my coat on showing everyone my arm doesn’t work so they knew I had a disability’

‘Liz, you shouldn’t have to do that!’

I shouldn’t but I do..

Me and MY disability.

And then..

And thats when it hit me,
the fact this is real and this is really happening
University and the fact I'm in year three

The fact that I'm capable of sending my dissertation to my mum and not screaming or getting angry when she replies with ' I've just sent some suggestions Liz'..
The fact that when I walk to through the library the tutors talk TO me, not AT me and people smile.
No one patronises me anymore, I'm me and I've created a different version of me.

My version of normal.

A version of someone who doesn't need to check my blog posts for spelling mistakes because my brain can realise when I've mis spelt something..

My brain can realise when its going to 'blow' and scream.

Thats when it hit me.

The turnitin page loading..

The page every student hates but loves secretly because it means we've achieved something we dreaded for months..

something that caused my seizures which by the way have calmed down because I realised stress and lack of sleep were the cause for my sezuires..

I keep replaying my neurophysycologist saying 'You won't return to university Elizabeth' especially not for a long time..

Yeah Yeah..

I'm here, I'm me

And then.

The page loaded :)

Hi I’m Elizabeth..

I’m not your average young adult..
I’ve had to grow up quicker than the rest of you,
I mean I'm not saying I'm completely an adult or mature I still act like a child.
because thats what happens after a stroke, your brain is almost child like,

but no one will understand that, they will notice the little bits;

laughing uncontrollably
saying what you think out loud without thinking it through
learning to walk
adapting to life
learning to read write and see things in an adult way

and I suppose to you *being 'normal*

Hi I'm Elizabeth..

I'm not a stroke survivor, I'm me.
I'm who I want to be, I'm strong, I may not be capable of things you are, or things I could do 'before'
but, thats okay because thats what my brain can learn..

Hi I'm Elizabeth..

I struggle with slopes and stairs because my knee is weak, my arm is in a bent position but it is strong believe it or not :)

My hand is clenched into a fist, but does open.. slowly
and I can punch with it..

I take probably more medication than most people over the age of 60, but thats okay.

Because I'm normal.

I am me.

Retaining information..

“It’s not dyslexia it’s something a lot more complicated..”

But nope you won’t understand..

Retaining information..

At university we have this tutor who not going to lie everyone actually hates, it might be because he’s so abrupt and honest but he’s probably just trying to help.

I mean I was lucky to get into university considering I can’t retain information that well..

I can’t read small print, it’s all fuzzy but ITS NOT DYSLEXIA!

remember, I’m not like you ;) I’m ‘normal’

Retaining information..

I got given so much research in terms of like book after book that I honestly can’t read, I can read but the words are like lost somewhere in my brain..

I repeated the same chapter about 4 times in two days just to remember what had happened..

I post quotes because they help me get by.. sounds mental I know but when I was in hospital my mum gave me quotes to ‘make me happy’
You know the standard;

"You’re braver than you think..."

And I guess they’ve ‘stuck’

But I am learning to retain information ;)

And ITS NOT DYSLEXIA!

MY blood cancer :)

You know it’s real when it’s on the McMillan cancer support page:

https://www.macmillan.org.uk/information-and-support/blood-cancer/blood-disorders-neoplasms/essential-thrombocythaemia.html

‘Blood cancer’

Essential thrombocythaemia (ET) is a rare condition which affects the bone marrow – the spongy material found in bones. Bone marrow is where our blood cells are made. In ET, too many platelets are made. Platelets help the blood to clot.

Rare..
“Lizzie, it’s rare”

That’s what I tell myself everytime I swallow my chemotherapy, everytime I brush through my hair and think about how much is clogging up mine and Liam’s plug.

“Lizzie, it’s rare”

My skin goes blue and patchy showing the scars from my splint all down my left side.

Blood cancer..

It’s something that caused my stroke

I find those ‘advice pages’ really unhelpful because quite frankly it’s up to me to cope and I find it easier to just deal with it.


This blog post is short and difficult to write because its a 'touchy subject'..

All I'll end it with is;
''KEEP CALM AND CARRY ON"

MY stroke of independence..

I decided to seperate confidence and independence up because well, they’re two different things
*duh*

My independence came from being comfortable in my own skin, being allowed to enter the REAL world and be myself, letting my hair down and just spreading my wings..

Independence after a stroke is so difficult to regain, I lost the use of my left side, and I’ve only just learnt how to open a bloody jar..
‘Urm Liam, can you open the jam please?!’

Also child lock on bleach and stuff... literally impossible!

Independence is doing things on your own, like, going to the toilet..
*remember that blog post where my mum had to hold me on the toilet in hospital?*..
I try and forget that aswell don’t worry ;)

Independence..

My independence came from being independent enough to say ‘no, do you know what, I won’t take those tablets because I take enough!’

Independence..

I learnt how to be independent through people; coming and going, hurting me without knowing and  treating me with no respect..

But I thankyou

Because now I am independent.

MY stroke of confidence..

confidence comes from strength. ( I think)
confidence isn't just walking into a room and talking to people.

confidence is waking up and getting dressed, it's realising that I've got to do this and get on with this day which could be a full day (due to when my fatigue allows me to wake up..)

confidence is shutting the front door behind me and my foot touching the pavement knowing I'm officially outside,
"you can do this Lizzie!"

confidence..

confidence is going a whole day not thinking about seizures or hallucinating, seeing that person who follows you around and constantly tells you 'you're going to have a seizure! it's going to happen'..

confidence is spending a whole day at uni, standing up from chairs when were asked to 'move' or waiting in reception on my own for my learning support (who's always late by the way)..

confidence..

I found gaining my confidence really hard because people still try to put me down, even those who I've known for years..

But after a brain injury it is literally the hardest thing.. you're constantly doubting yourself
'I'll never be liked' bla bla, but people don't see that..

I'm safe :)
I'm confident.

Hospitals..

The only place where people accept your disability..


I always try to be my best because I remember how much I was ‘put down’
I remember telling professionals  I wanted to be able to walk to my own appointments again because it’s what I’d do ‘before’ this meant gaining independence and confidence again..

Hospitals..

The long corridor that when it was being built they assumed adding some horrible glittery ‘overlay’ on the floor would possibly make your experience ‘enjoyable’..

I always get lost (believe it or not)
‘Excuse me where is haematology?’

Hospitals..

I feel at ‘home’
Letting my arm loose comfortable with the way I look and when people stare feeling confident enough to smile and be positive

‘Oh but you should feel like that everyday, look what you’ve been through’

Hospitals..

The dreaded moment someone in a bed gets wheeled past you by a porter looking ill as anything unknown to where their going to be ‘placed’ and all I can think of is ‘please don’t say they’ve suffered a stroke’

Hospitals..

I find them scary, the nurses all know me because well ‘Im the young girl who had the stroke’
The pathology ‘team’ all say hi to me.

Oh yes I’m a regular *yay*

When I was on the stroke ward some nurse took my blood and it was never given in (therefore someone out there has my blood)..
me and mum used to laugh about it claiming he was a vampire..

Hospitals..

The dull pictures you see as you sit in the waiting rooms, flowers and  scenes from places that only the elderly would visit.

The loud ringtones people have that they seem embarrassed by, but at the point of choosing them they were probably very excited.. some upbeat drum noise on an old Nokia. *There’s probably a remix version now*

Hospitals..

The only time people can escape their home, for some people this is probably their only time out, they open up and you hear everything that is and has ever been wrong with them..

Janice currently has a bad foot and can’t climb her stairs..
Her neighbor was rushed to the hospital and Janice is ‘very worried’
Sympathetic sigh from the lady looking really uninterested next to her..

Hospitals..

My stroke of happiness and creativity

I can see bright colours again
I can think/ imagine a better future
I can remember more things now

My stroke of happiness and creativity..

My brains adapting to a positive style
Maybe that’s a bad thing?
But maybe it’s a good thing because

It’s
My stroke of happiness and creativity..

You might think I’m insane
You might think I’m crazy

But the thing is;
I’m different
I see things in a different way
But that’s okay because I’m different to you.

Remember the days where I’d walk with my head facing the floor? Holding my arm so tight that my vulnerability was shining right through me..

My stroke of happiness and creativity..

I can walk
And I can do stuff in different ways, some that you may think look funny

You may laugh and you may stare

But I honestly don’t care.

My stroke of happiness and creativity..

Life after a stroke, I’m still young

I woke up with a disability
Unknown to why and how I’d cope

Life after a stroke..

Worried about the way I walk everyday and anxious to try things I used to do everyday

Life after a stroke..

I’ll always reflect so don’t judge me for that.

Life after a stroke..

I’m still young, worrying about my future but coping the best way I can

Dealing with a life that I can’t change.

Life after a stroke..

Uncontrollable laughing fits where people don’t understand why I can’t stop
Taking out my anger on those who care the most, but knowing it’s not fair

Life after a stroke..

Anxious of everyday that’s coming incase something bad happens

But remembering that’s just my brain injury

And that’s life after a stroke..

I’m still young

Recovery..

You get the 6/12 week physiotherapy
Perhaps a few sheets of exercises that are photocopied and you can’t actually do..

Recovery from a stroke is draining
the affects from training your brain are tiring because everything you're doing is connecting new pathways but reconnecting the old ones
*if that makes sense*...
They'll always stay damaged (I like to assume and picture them as if they are really squishy)..

recovery..

I never write or talk about recovery because recovery is something I assume you just notice; through my blogs, my personality and to those who know me; my appearance.

recovery..

from a stroke its all about the paralysis if you're unfortunate enough to go through the experience of paralysis.. my stroke affected my whole left side..

I constantly smile at myself through my selfie screen on my phone to check if my droop has improved (massive problem at first)..
I constantly try to move my hand to open it because the tone is really tight
I struggle to bend my knee as its really weak but thats always been a problem
I am still slow on my feet because I have quite poor balance

recovery..

no one asks how recovery is going, because once you're out of hospital and 'walking' they assume  you're 'back to normal' but you're not.

you're still struggling

with no physiotherapy and no occupational therapy..

Just you
and your
But I am recovering fine, thanks for never asking :)
recovery..

Why I blog..

I blog obviously as you can read at the top of this blog my illnesses and stroke bla bla (booring) BUT I’m 24 now and blogger won’t change my bio :(

But because I feel it’s giving me confidence and independence to hold my head high and fight everything I am currently going through and living with; I deal with different obstacles everyday, each one challenges me in various ways

Why I blog.

You can view my progress from start to now, as I continue to show you and travel through my recovery, oh my very fun recovery..

Why I blog.

I find it therapeutic, I remember reading my mums blogs when she had cancer and how she could just vent her feelings through writing, she helped me start this blog..
it took a while to physically get this blog started because of my fatigue and motivation being so bad

Why I blog..

I find it interesting and positive to raise awareness in what I’ve been through and I hope to prevent it happening to others..


Why I blog :)

What is normal?

“Striving to preserve identity”
The other day I had an interview with radio one and they asked
“So, are you back to 100% normality?”..


What is normal?
Why do we try so hard to be normal?

As stroke ‘survivors’ our brain is damaged; everyone’s is damaged in  different ways and places to the point where they  can’t process their feelings  or emotions and they will aim to be someone they are never going to be..
Again..

Is that a good thing?

For me?
Yes.

I never accepted this, I tried SO. Hard to be ‘normal’

What is this normal that we assume is so normal?

I had people breathing down my neck telling me I wasn’t ‘walking properly’ I ‘wasnt like I was before’  people that I thought loved me and assumed always would. But we’re only there to damage me even more than before..

We are damaging our brains (even those who haven’t suffered brain injuries trying to be this version of ‘normal’) because

What the f*ck is normal?..

Who is judging us?

Who are we letting define us?..

Don’t worry..

I’ve given up trying to explain the things I struggle with due to my illnesses (to other people) In person..

It’s such a drain, they’ll never understand

It’s about training MY brain to understand,

Don’t worry..

It’s such a struggle to come to terms with why people don’t understand my thoughts and feelings;
Why don’t they see the world the same?!
Why am I so different?
Is there something wrong with me?

Don’t worry..

They’ll never realise the anxiety of my struggles and it really upsets me, the days where my brain has no filter but they don’t seem to understand when I apologise.

Don’t worry..

My recovery will continue and my goals will forever change
My brain will aim to rewire everyday
But you will never understand

Don’t worry..

A brain with no filter..

but a bloody lot of motivation!
If I don’t say so myself..


There we go and I couldn’t f*cking stop it ;)

A brain with no filter..

It just comes out, it’s uncontrollable

I always watch Gordon Ramsey and ask myself ‘does he NEED to swear in every sentence?!’
Like is it necessary?

Then I realise SHIT I do that..

Sometimes :)

A brain with no filter..

Speech and language tried to rewire it, and I don’t know how it’ll ever change because swearing is something that’s just ‘common now’ but I also just ‘say what’s on my mind’..

But this time it’s not to twitter or Facebook it’s within a conversation..
People don’t understand it though, I’ll giggle because I’ll realise but they’ll just look shocked..

Because it’s that outrageous.
I mean, those who genuinely have no time (read my old blog posts. And you’ll notice the change)
I don’t because I cringe..

I mean
FUCK..

A brain with no filter..

But in the progress of training *for a marathon* ;)

It’s a little bit funny

‘That feeling inside’

*Brain fog*

Those who have brain injuries really struggle with this, because just like accepting they have a brain injury (hidden disability) that will never disappear, no one believes or understands when we ‘explain’;

Close your eyes, shut them really tight and then open them really quickly, this is how I view the world (since my stroke) this is MY brain fog..

Brain fog..

You think you remember what you were doing but the swishing sound repeatedly going on inside your head and  in your ears is putting you off remembering what you needed to remember (damn)

Brain fog..

Sit down, stand up, sit down, stand up..
Yes you feel dizzy, so do ‘we’ every bloody day! We wake up after a ‘nice nap’ but nope still dizzy..
Your dizziness probably leaves you within seconds of the first steps you take..
Mine definitely stays with me.

*is it a bird is it a plane?!* nope it’s
Brain fog..

It’s like a sheet of transparent light covering your eyes, worse when you’re outside, you assume you’re going blind or you’re mentally insane..

Brain fog..

That fuzzy feeling that is in control of your brain after a brain injury.

Sometimes..

I don’t know why
And I don’t know how

And some might think ‘oh but surely that’s a good thing?!’

But it’s not..

Sometimes I forget..

I’ll turn around to quickly forgetting my balance isn’t as good as before and nearly fall
I’ll take a step in the shower and forget that the slip matt is genuinely saving my life

Sometimes I forget..

I’ll walk really fast and either trip or fall
I’ll plan to do things after a busy day and forget about being exhausted

Sometimes I forget..

The medication box is empty because I’d of forgotten that I need to take medication for numerous illnesses..

Sometimes I forget and you’re probably thinking it’s a good thing
A good thing I’m forgetting about my disability

But it’s not, it’s dangerous

Because I shouldn’t forget


But it’s my brain injury

Messing with my mind and testing me, again.

Drop foot

You’re the reason I wear a  support around my ankle which makes people stare
You’re the reason I walk slower without the support, so I don’t fall

Drop foot..

No one knows I have you because I hide you quite well..
You’re difficult to ‘train’ because you’re such a complex part of my brain (like my hand)

Drop foot..

You’re the reason I fall sideways instead of straight in front of myself
You’re the reason I have scars on my leg due to my splint cutting my ankle and shin from the early days of trying to tighten you so much

I assumed that if I pulled the straps that assisted my ankle would bring my ankle back

People stare, they’ll look down then look up because they notice that I’ve noticed them looking..
That’s a confidence knock

Drop foot..

Fatigue

Everyone gets tired
But fatigue is different and unless you ‘suffer’ with fatigue you will never ever understand,

Understand;

The days where you’d wake up from the ‘recommended 8/9 hours of sleep’ but still be exhausted
The naps you wake up from but feel so drained you just fall back into a ‘deep nap’
The nights where you try to socialise and watching other people to try and see how they don’t get tired

‘To be *normal*
Wait..

What is normal?..

You feel ashamed to tell people you’re tired because you don’t want to let them down
They’ll never understand your brain is re-wiring


Every step I take
Every time I speak
Every time I think
Every move I make
*no I’m not attempting to sing..*

Fatigue..

I call it
Fucking annoying tiredness I get unexpectedly everyday
LOL :)

Fatigue..

YOUNG and disabled.

what is your definition of disabled?

no seriously?..


This is due to recently being asked to move out of a chair because I 'wasn't press' by Tracey Emin's brother..
Before this I was given looks by older people throughout the speech as I was sitting down, I wasn't able to stand because I was really tired ( Fatigue).
and this made me feel really uncomfortable..


"Why are you sitting there!?!?"
"She's disabled she can't stand"


I don't have a walking stick -  anymore
I am no longer in a wheelchair
I am no longer being assisted by someone when I'm 'out and about'

but I am disabled..

I cannot use my arm
my balance is awful
my brain is damaged
I suffer from epilepsy
I wear a splint that helps me to walk

I am disabled..

If I was older, would you stop me to ask 'if I needed that seat?' if I 'needed to use the lift?'

because thats what happens..
Its uncomfortable, not only living with a disability but being discriminated against
because of my age.

Younger people can be disabled.

I count myself as 'lucky' because I could and was much worse than I am now..

I cannot confront you to argue my 'case' why should I have to?
why should I embarrass myself by explaining my 'story' to you, just to make myself happy and be able to sit down..

I am disabled..

A dark cloud watching over you.

I’ve written recently on anxiety but recently thought I should explain in depth exactly how it feels because it’s only explained as;
‘A worry or fear, such as a fast heart rate’

But, reality is it’s so much more than that...


Anxiety is..

The dark cloud that follows over you everywhere you are and go, you know it’s there but you can’t physically see it which is probably why people assume you are ‘just wanting attention’
It’s the sudden shock of panic you get everytime you feel something touch you, or someone walk near/past you
It’s the loss of breath you suffer from when you re about to do something you’ve never done before
It’s the upset that you show on your face along with the bags under your eyes from the lack of sleep that anxiety is causing you..

Anxiety is something you try to forget about because that’s the only way people try to help
“Just don’t think about it, you’ll be fine!”

And the reality is, deep down you know you will and are

But;
anxiety stops you believing in yourself..

noticing

It might just be me and it may just be my brain injury..

But I notice a difference
we are the same
we are just connected differently (not slightly, quite a lot)

I notice the difference in myself depending on who I'm with, when;
we talk
we walk
we react and our emotions are different..

But we are the same
slightly :)

I can't read small print so when handed books or told to 'read descriptive things' I won't understand and will avoid it completely.

not because I don't want to try but because to scares me

it scares me to realise you can understand but I can't.

But we are the same

I dont understand your jokes or your sarcasm or how you try to describe something (usually the joke you've just tried to tell me) and I'm sorry for that

But we are the same

When I say the same I mean in a way thats the fact that we are both human
I just live with a brain injury..
which I'll admit I need to accept.
slightly ;) 


''does that make sense?''..

I’m not rude I promise..

Sometimes I don’t ask you if you’re okay because I can’t process the question to respond
“You alright?!”you might not get a reply but possibly a smile as I am aware of how it may ‘come across’..

But I'm not rude I promise
It’s my brain and it’s how it’s damaged..

Sometimes I frown at you because I’m struggling to understand;
Where I am
What I’m doing and who you are..

But I’m not rude I promise

I assume you’re going to let me down, whoever you are because I’m not used to trust,
I can’t trust you, people have let me down since my stroke that I can’t trust, unless you ‘let me in’ to understand and get to know you..
(Liam and my family)

Would you trust people?

My brain doesn’t understand itself;
Why am I like this after all this time?
What’s going to happen next?
Why can’t I understand after all this time?

Who am I....
regardless of my name I’m still learning who I am as a person.

But I’m not rude I promise

‘Was that a joke?!’ I don’t understand when you’re joking or if you’re being sarcastic, so please just don’t (because I don’t understand you)

But I’m not rude I promise...

Just a doctor..

This is a blog post explaining how I feel after every doctors appointment or ‘consultant’

To you it’s a job you see hundreds of people a year, probably a month..

But you don’t and never will understand the struggle;

Yes I’ll take the medication you’ve just written on a green slip to ‘pick up from the local pharmacy’
But don’t tell me the side affects and expect me to be ‘excited it’s going to possibly help’

You just sit in a chair waiting for the next patient


The anxiety rushes through me as I sit there waiting for you to explain and write on a piece of paper, to be throw into a cabinet of paperwork no one reads..

‘Oh let me check your notes quickly’..


You don’t see the bad days, the days where everything is a blur but I need to carry on, not for me but everyone else..
Why?
Because otherwise I’m a failure.

STROKE RECOVERERS NOT SURVIVORS..

Okay so I watched the programme about Barbie on channel 4 and ‘perception’ is currently my NEW favourite word :)

Sometimes I get the occasional
“I don’t know how you do it?”

I’ve never really understood what ‘it’ is..

It as in stroke ‘recoverers’.. this is a better way of saying and explaining who we are,
Because it’s what we do.. ‘we’ as in the classed as, ‘stroke survivors’

I remember there was an article written about me, they headlined it as
‘Stroke victim Elizabeth Ashmore tells of her fight for survival’
I’m sorry WHAT? Survival?..
the perception of people whom have suffered strokes;
TIA’S
‘Major strokes’
And if there are any more types of stroke..

No one sees our bad days
The days at the start where;

We compare ourselves to others recovering
We’re TOLD how we may recover and our brains will ‘re-wire
We ALL loose something and someone (friends and unfortunately for some partners)
We’re so vulnerable that we will believe and fall for anything anyone says to us
We will blame ourselves for suffering the stroke


And then obviously there is how we are affected..

Some can’t even speak- known as ‘aphasia’

Unable to ‘speak out’ to put it bluntly
Tell everyone to
‘Fuck off’

Vulnerability is a HUGE problem as stroke recovers to recover, its so difficult to realise that you are infact more vulnerable than a child..

The perception *there the word is again!!* of stroke ‘survivors’ as SOME idiots say..
Will NEVER be changed and I think as a personal opinion it slows our recovery down, you are stopping us from;

Believing in ourselves
Recovering at our own speed
To start LOOKING FORWARDS not back..
(These stroke survivor Facebook groups really don’t help)
Trying to be ‘normal’

THERE IS NO NORMAL!

Leave the past in the past and just be who you are..

Inside MY skull..

I  write the titles of my posts in capitals because I want you to think;
COR BLIMEY THATS IMPORTANT
This blog is MY recovery and how I cope..
I talk about ‘other stroke survivors’ And aim to almost explain and help them to cope with their brain injuries..

How do I explain MY disability?
My brain injury, it’s so hard to explain and to be honest I shouldn’t have too.. but the reality of life is that no one really knows the ‘symptoms of stroke’ you watch the FAST advert and yes it is ‘helpful’ for the outside views..


Inside the skull
The brain is slowly ‘dying’ slowly struggling to cope with the disaster that yes is happening on the outside..

I’ve recently been talking about MY epilepsy as that’s part of my brain injury, it’s a massive struggle, I have to explain to; friends, tutors, my family and everyone how to ‘deal with me’ and what actually happens, because they need to know..

‘It’s like a fire in the brain’..

My brain injury
I explain my brain to mainly tutors at university as they’re the main people who need to know, I mean ‘they deal with me..’ and how guilty would they feel if they couldn’t and didn’t help?.. because they didn’t know what to do.

The Reality
Yes it would be my fault because it is hard to explain, explaining with the actual brain injury? I mean, I can’t even remember to lock the door.. how do I explain what’s going on in my head

My crazy little head...
Spinning
Turning
Confused
Disorientated
Struggling at times..

But staying strong
And accepting that YES I have a disability

For life..

Bring ME back to life!

As my friends and family know,
TODAY IS MY BIRTHDAY (I’m 24 and getting old, as is my brain)


But something I’ve always felt like and thought about is my left side ‘coming back to life’

My blog is about honesty and how I’m coping living and ‘recovering..’ so I wanted to share this with all you lovely readers!

When I first learnt to walk I’ve already said many times I used to ask my mum
‘How long did it take me to learn to walk when I was a baby?’

Right now I can’t;
Functionally use my hand
My ankle
And I live with a serious brain injury (I know this is a life long thing, but I’m cool with that)

So I guess for a ‘stroke survivor’ (I hate the word survivor it just seems so critical) you could say I’m actually recovering pretty well considering the situation I was in three years ago..

‘Bring me back to life!’

If I’m honest I’d much rather my ankle cane back because this bloody splint is so uncomfortable and people stare more at that, but I do wake up on every birthday with the wish that my hand and ankle came back ( I know that recovery is about training the brain) and lets me totally honest the only exercise and things I do to recover more is walk smile and try to be positive..

Obviously today is another day, not of upset and hurt because I haven’t magically and functionally recovered because that’s ridiculous and impossible *Lizzie, you’re to bloody lazy!*
BUT

ITS MY BIRTHDAY!!!

keep calm and carry on..

It’s about what you CAN do, not what you can’t..

MY funny memories..

In my eyes..

'The lighter side of stroke'

Memories last a life time..

Obviously my stroke and the stroke ward will ..

ridiculously small 

And so will the memory of being shown a tiny red copy of a car (imagine the ones children can go on at amusement park) honestly it was ridiculous, 'right Elizabeth let's teach you how to get in and out of a car' *for starters I don't drive and also it was tiny!* 

I started laughing yesterday because the memory of just seeing this car was hilarious.. everyday at physiotherapy in the gym I watched elderly patients attempt to climb in and out of it, (not laughing at them) but laughing at how ridiculous the fact it genuinely was nowhere near the size of ANY car.. 

'Fuuuuuuck'

(Excuse the language or 'french' as people say, but it's necessary for this..) 

I remember vaguely when I was in the actual stroke ward all strapped up to beeping machines, hearing some random shouting noise.. obviously I was terrified but having someone randomly shouting 'fuck fuck fuck' is quite funny.. especially when you feel exactly the same.. 'fuuuuuuck' but you can't scream it because you already feel stupid.

Lazy

You become so lazy, you assume that everything you need done will just be done for you, 'can you open this please?' *something I could do..* obviously the response of 'no you can bloody do it!' (Urgh) you're so used to everyone doing everything for you then it STOPS.. great. 

The aftermath 

Coming home isn't easy but oh my god it's SO exciting (you're escaping the crazy lady screaming fuck numerous times) It's actually when you realise your  disability is real and everything becomes a little bit more difficult;

The knee

It snaps forwards but I cope, ill be walking and it'll just 'snap forwards' just a hyper extension but in front.

Spreading

You're given a bit of 'sticky stuff' which is MEANT to hold down appliances to stop them sliding around and let you spread bread and stuff easier, my toast loves the floor! *there is a 3 second rule though?*..

Excuses..

'Mum I've got a brain injury and bad memory I have an excuse!' This is so good when you constantly ask the same question 'when are we getting the train again?' Possibly asked 10 times.. I don't use it a lot but when Liam or my mum reply 'YOUVE ASKED THIS!' I simply reply with 'yeah but I've got a brain injury and memory problems..' *silence occurs..* 

Queue jump

Obviously I don't jump but when it comes to being 'known in boots' for having so much medication they call me to the front.. 

*stares from everyone waiting*..

Disability unknown

Putting people in their place 'YOU CAN'T SIT HERE!' yeah alright you're not Gretchen from mean girls.. younger people can have disabilities and I'm allowed to sit here on this bus.. 

Positivity 

I can get in ACTUAL SIZE cars

I can spread without my toast flying around 

I dont always queue jump

My knee is safe & I can walk..  

Me and MY epilepsy..

I suffer with epilepsy and have done since my stroke,
I personally would say this is worse than my disability as it comes with more 'difficulties'..


My head completely turns to the left when I have a sezuire, I convulse and bite through my tongue, I go blue and stiff making it really difficult to 'put me in the recovery position' (this is how you help me)..
I don't know how long they last but to me, it's like a bloody life time! And I ache SO much afterwards and I just want to sleep for days..


Abscent
'Arm flick' this is an abscent seizure and the majority of people I know have seen how distressing they are, if I continue to 'follow it through' it causes a HUGE ONE.. (stated above) these happen daily, sometimes one every 5 minutes..

The public..
People get scared, 'what do I do if you have a seizure?'.. everyone gets anxious to almost be around me, I get that.. I'd be nervous, you can see it in their faces, I had about 10 seizures in the space of two weeks.. Liam has seen me in situations he shouldn't ever have to and Im struggling, mainly with the fact they just happen; in my sleep, in the street, at home ANYWHERE! your brain just doesn't care.

Anxiety
This is HUGE for epileptics, I mean you'd be overly anxious, wouldn't you?
When you're asked about it you do have to explain but it makes it so much worse,
'Can we just not talk about it please..' even explaining to the doctor or my mum who needs to know that I'm having them..

The purple card
'I bite my tongue I'm on this medication and  this is the recovery position'
I hold this as I walk anywhere, walking from the bus station through the crowds of Canterbury college students is the hardest part as they're so young they wouldn't know what to do if 'it happened'..
the purple card is my best friend, it stays in my hand through any journey, or my right pocket, for safety.. a 'safety blanket'

I wouldn't even know what to do
Even if I saw someone having one, I genuinely wouldn't be able to help; because of my disability and my emotional state of being to emotional to deal with seeing someone in pain..

Tiredness
When I'm extremely tired I get scared because I know my seizures can be caused by this, but then it's a side effect from my stroke and medication, confusion!!

Blood sugar
I have to keep my sugar levels up, when I have 'anxious moments' I buy something with sugar in it, orange juice is my fave!! I mean, it is part fruit?..


What type is it?
Honestly there are so many types of seizures.. there's even a leaflet with a list listing everything about them..
from; family planning, driving, medication, support and so much more..

Driving
I can't do that and I'll never be able to, that's one of the worst parts of epilepsy, watching you all 'pass your tests' I'm nearly 24 I took about three lessons and then became an epileptic.

Foggy
It's blurry, scary and everything is just scary, everyday when I wake up I take my medication and just take a deep breath, the bathroom door stays open so if I have one Liam can 'find me'..

Lights
I'm affected by fatigue and low blood sugar but flashing lights scare me, it's a 'cause' to the majority of epileptics, a light flashes and my eyes hurt, my head KILLS and I just need to 'lay down'.

Drinking
Recently as I've suffered so many sezuires, I havent had alcohol in ages! *world record* especially for me.. but yes I do drink, Malibu is my fave!! And I'm probably not meant to drink..
I'm only young..


https://www.epilepsy.com/learn/types-seizures


Don't be scared to be around me, I'm still human I just have a different brain..

Confidence

gaining your confidence is VERY difficult, struggling to 'keep it together'..

But aiming to be comfortable with who you are and what you're aiming to achieve in where you're aiming to go or what you're aiming to do, 

Confidence 

This is the MAIN struggle for stroke survivors, you loose all confidence in; yourself and sometimes others, why me? Why did this happen? Will it happen again? What if it does? 

Anywhere and at anytime..

Maybe this is my brain injury kicking in?..

I used to write blogs called 'dear brain' basically venting to something that was unable to function or understand ANYTHING I was complaining or moaning about, why?

Because I was angry.. 

my confidence gone, not forever but for enough time..

Gain it

Be really strong, this is to those who really struggle to be confident

It takes time

'I'm not saying it's going to be easy but it's going to be worth it' 

You can hold your head high again, you can do it! 

Believe

Believe in who you are, don't look back and compare, that's never going to help, just be confident in who you are as a person, confident to hold your head up and realise 

You are strong. 

We ALL need confidence, but after a stroke and with a brain injury you need to gain it more than you'd think..

The blur..

Why should I explain that I suffer a serious brain injury?
I suffer with epilepsy which is another separate damage to my nerves within my skull..

Why should I explain that me walking straight and not being able to process quick enough to move 'out of the way'
Ill try the best I can, I promise..

The blur
It might just be that I'm over doing it and I'm extremely fatigued, fatigued to the point of actually picturing myself just slumbered on the sofa *ahhh my comfortable sofa* a safe place, safer than where I am now..
Walking through the mist avoiding eye contact with strangers walking and pushing past me, not recognising or understanding that today is probably a 'bad day'

Bad days
They come and go, mostly they  'come' just appear! *BOOM you're still suffering with this brain injury, I will never go..*
They are a struggle, literally the worst! But when you see people you know, just before you take a deep breath and plan to be 'the best version of you' so they can see your strength shine through..

Beautiful inside
My brain scans scare me, the colours so bright from the 'CT scan dye' the dye that they injected through the cannula when I first arrived in the hospital, looked up and felt the BURN as it rushed through my veins..
I still feel that..

Viewing the world..
Do I take it all 'in'?
Do I experience the whole world? Not travelling obviously because ill never be able to experience that sort of thing, looking around and trying to not seem crazy, every morning when I walk to university I look up, experiencing the 'old parts' of each building (is that my brain injury becoming fixated on something?) fixated like people with autism or Aspergers sometimes do with trains..
The sides of my eye vision are slightly blurry, is that my brain becoming confused?

Confused
Why? Why am I disorientated, not just on bad days but everyday.. I know I'm tired, I know I'm still reconnecting but why? Why do I feel like I could just sit here and start talking to myself and not care what people around me think?

Not caring
I spent SO long being 'let down' 'dumped' and 'left' left to just be alone.. it was always my fault, well it was made to feel that way, then I was made to feel 'insane' for becoming so fixated on trying to establish why they left me, why? I'm not going to care what you think, you can push me as I walk through town but you'd never understand, nor would those who left so suddenly.

Life
It's with me to stay, that does scare me (only slightly) but will I feel like this forever? Will I always feel this disorientated?
'You're on a lot of medication it might be that?'

*i manage my iron levels by taking my iron tablets and chemotherapy*
Just like having to manage my sugar levels to stop seizures, confusion and disorientation

So let's poor a drink (not alcohol, I wish! But water to take those tablets)
And hope for a 'good day!'
:)

Loosing your independence..

What is independence?
Do you even stop to think about the meaning behind something so broad and important that's actually who you are as a person;
'Self - determination'
I'd say independence and confidence 'tie together' as one.. especially after a stroke or when you suffer a brain injury..


Imagine
A life where leaving the house is; to daunting, to much, to scary or just impossible
A rush of emotions that burn your chest when you start to think about 'the next stage' (of your day)
Not feeling comfortable to see anyone, even your family, sitting in a room with people just seems horrendous Because holding a conversation with someone is impossible
Making yourself food or doing everyday tasks is a 'struggle'


Now imagine being 20 and waking up to loose all of that..

Not being able to shower was probably the hardest thing, having carers every morning to; shower me, cook my breakfast and do 'everyday tasks' for me..
Suddenly I'd lost every bit of my independence, I'd never once even thought about what it meant..

'You're an adult now, you can ring the doctor on your own, you need to be independent!'
'They're walking now! All independent, growing up so fast!!'
Because that's the reality.. that's all you ever hear about independence as you're growing up..

Your life flashes before your eyes when you finally gain independence again, gaining the courage to do things that 'before' you'd taken for granted;
Showering
Getting dressed
Cooking and preparing food
Leaving the house
Having the confidence to 'face the world!' Have conversations with family and 'friends' (I put friends in quotations as I'd lost all mine after my stroke) possibly due to the independence being *gone!*

Imagine
Being 'older' and loosing your independence/confidence.. it happens, to us all, we grow old and suddenly life is 'different' they've lived so long creating a life and then BAM it's gone..
this can be from any illness..
but 'strokes only affect over 65's' bla bla..

Make the most of your independence..
Encourage yourself to be confident inside and out.

Be strong
Be confident and
Be happy..

I've gained mine, can you keep yours?

BEEEEEEEEEEEP..

'Please shut up'..

Noises..

Sounds are so difficult to 'deal' with
We all struggle when hearing loud noises and irritating sounds but with a brain injury it's genuinely so painful!

Ambulances - I've spent enough time in them, the sounds of the sirens screeching down roads when someone's in danger, ringing through your ears, leaving the siren a memory as it passes by..
Saving someone's life but damaging my brain, driving me crazy.

Busses - when I wait for my bus, they beep loudly in order to reverse (always makes me jump) it's exactly like a trumpet.. honestly it's so painful to hear, I'm hearing it right now and it just 'grinds my gears'.

Printers -
At university the printers are touch screen to 'set up your printing' beep beep beep.. YES OKAY maybe just have one button that says 'print'.. you can hear this noise even when sitting at a distance, why does the whole library need to know someone's using the printers?..

Sipping - we all find this annoying, but listening (hearing) someone sipping a drink is so annoying.

Keyboards - TAP TAP TAP.. please stop, I can just hear you tapping away writing your essay or texting.. it's a tapping that is constant, slows down and speeds up which is so hard for my brain to 'take in' because as you're typing I'm trying to process not screaming in your face and the fact that speed is changing non stop (brain overload)...

The right side of my brain was affected which affects your 'emotions' and I get angry over anything if everything which I've mentioned before...

I struggle with 'loud noises' it's SO stressful, I know that might seem odd but it's just my brain injury 'kicking in'..

There are many more sounds that 'p*ss me off' but as I was out for the day I 'noted down' some sounds I'd heard that really annoyed me (listed above) and there are many more..

Leaving a ringing sound in your ears, rushing through my head leaving a 'swishing' noise (not a headache, worse!) a constant ringing..
'Beeeeeeeeeeeep' *high pitched ringing noise*

Before my stroke I would shout at my stepdad for sipping his tea (not gonna lie, it was SO annoying!)  but this aggression is worse now, I try to keep the anger in, holding in my anger *lizzie, read the stupid headway sheet about anger and brain injuries you have*..
no? Okay, why?
"It's to much to read and take in!"
(Brain injuries and reading)...


You grind your teeth together and push down, I've cracked my phone screen from putting my phone in my mouth and hearing a loud noise.. my teeth were biting so hard

(phone is recovering..)

You're too close to me..

Don't breathe on my shoulder, its creepy
Stay at a distance, were not connected..
Don't walk so close to me then sigh and moan when I'm struggling to 'speed up' because I want to distance myself from your presence..
 My brain injury struggles with people walking to close to me, well.. My brain does and here is why:

Offence
It's nothing against you as a person it's just my brain, I get scared
I try to turn and look at you in an aggressive angry way 'bitch face' as I've been called... but you are  scaring me being so close.

Space
I need space and distance from you, you don't need to be that close to me, I can't walk fast enough to escape..
Everyone needs space? Right?..

Trip 
I'll trip up if you're too close, my leg is hyper-extending to the point where if I walk any faster my knee could give way, then I'll fall flat on my face..

Struggling
I'm struggling to think and process my thoughts, I know I'm only walking but my brain is 'thinking, teaching and learning' every step I take is an adventure...

Time
Why is everything so rushed? why do you need to be walking so fast? why me? why breathe down my spine and scare me? because you are

You're scaring me,

yes you.. the people who push and shove me, giggle when I walk down slopes or take two extra steps before stepping up a curb, just so my knee doesn't bend forward and 'snap' so that I'm laying flat on my face..
The people who will sit so close to me on a bench then swear at me if my arm 'flicks' and I suffer an absent seizure.. You caused it, you sitting so close to me..

I'm anxious

Anxious
anxious of you touching me (no, not like that..) just my health

Health comes first
If you have a cold? an infection? some kind of 'catchable virus'; my kidneys don't work, my immune system is weak and I know you won't know that, but I do and it worries me..

What would I of caught? who from? who are you?..

'Take a break have a Kit Kat'..

My crazy little world..

we all live on the same world.. 'Earth'

Accept when it comes to my world it's different;

I see you but don't feel you
Numb down the left side, unable to feel if you physically touch me, unless I fall to the floor and bruise as a side effect from my blood condition or a seizure..

'Does that make sense?'
Checking that you understood what I've said, asking if what I've asked you makes sense, you say yes but I don't know if you're lying to me..

My head understanding deep deep down somewhere inside but still confused and trying hard to function like 'you' the 'normal people' who will judge anyone that isn't 'perfect'....

Copying
Aiming to follow a crowd and analysing how they act 'damn I wish I could do that' what?..
'I dunno?' Keep my speed when walking down slopes or keep my balance when stepping up a curb maybe going a day without being anxious..

Emotions
'Oh my god REALLY?' *i don't understand your sarcasm or 'jokes' you aim to tell me a joke or be sarcastic around me.. don't even bother because I don't understand you.. everything is 'true' everything is misunderstood..not by me, by my brain..


My brain
A brain that once was connected 'fully?' We will never know.. but right now and for the past three years? Yes oh my god three!!
*seems like yesterday..* is currently aiming to recover, to become its closest version of 'functional'..

why?
To help me gain my confidence, to 'shine bright'

To..
To make you stop the staring and criticising, watching everything I do, checking I'm okay and 'coping' because I am, in my own 'crazy little world'

Managing
Stutting through life ( the Lizzie walk). acting like everything is how I want it to be..

Anger
The anger outbursts that my family will deal with when I know deep  down  they're right but can't accept it, I NEED to be the 'right one' the snappy moments that are because of my brain injury, this time it's not an excuse, I promise..

Normal
What? Sorry, what is normal? Enlighten me..

Teeth marks
The makeup that is applied with one arm, the lid that is twisted off with my mouth, and the teeth marks left on the ends of all my mascaras and so on..

Crash Bang Wallop
The floor is a friend, a regular friend, whom catches me when I fall.. when my balance is struggling and my splint gives way, when my seizures reach the 'next level' *ground floor please!*

Drained
I'm fatigued I'm tired and writing this has made me tired, why? Because my brain is recovering....


Oh it's a wonderful life!
No really, it is :)

Meet the arm..

The arm that gets more comments than you'd imagine..

"I think it'll come back" - please don't..
"Do you get physio?" - no I don't so please stop questioning me
"So what can you do with it?" - here why don't you have a feel? Then you can judge me even more..
"What happened to your hand?" - oh here we go..


The position
The position is bent in an upright position, it doesn't relax unless I forcefully pull it, it's called 'spasticity '
I don't see why you should feel the need to stare? It's just resting, it's having a little rest.. a rest from your; stares, questions and criticisms of how I choose to recover..

Recovery
Recovery of an arm or hand is longer than any other part of the body, especially after a stroke, think of how complex your hand is; fingers, wrist, movement..

What can I do?
I can stretch it, I can straighten it, open my hand when it's bent, stretch my fingers when relaxed and lift my arm above my head..
More than I could do..


 spasticity
Spasticity - a condition where the muscles are contracted together, causing stiffness or tightness
*another 'condition'... *


The flick
It's called an abscent seizure, it flicks out voluntarily, it does look funny I know but ignore it, if I could stop it I really would..


Paralysis
It's so difficult, at a young age you struggle with people acting like its not allowed, why can't I have a disability?..
"Just move, move come on.. for me, you worked for 20 years"
'No? Okay, cool'

Why?
Why do you stare at it? Why should my arm effect you? It's the same as yours it just doesn't move 'properly'.. is it not 'normal' for you?'..

Confidence
It looks odd I know, I'm used to it, I'm used to you questioning me, my confidence gets knocked when you judge me, my brain gets emotionally upset (causes the seizures) do you want that? Do you want the stress of helping me after a seizure? ..

Numb
Just like my feelings after your stares, I can't feel it.. it's numb, my whole left side is numb.. no it's not 'cool'.. it hurts knowing that if I fall I could of broken it and wouldn't actually know.


Don't
"I think it will come back you know, give it time.."
"So, do you get physio?"

Leave me and my hand and arm alone..
Ok?

Managing Time..

"Lizzie, I hate talking to you because you're always ahead!"
"That's something we've spoken about, you need to take it slow"

Managing time
with a brain injury it is SO difficult..
especially after a stroke..
I was taught to 'always do it on time' *rush rush rush..*
I was always telling myself "Lizzie come on YOU CAN DO THIS! 
(put your all into it) what even is your 'all?'
 'all what?'.. 


If you're suffering with a brain injury and struggle with anything I write about in this post, buy this book it's amazing! *it's illustrations alongside writing so you'll be able to 'keep up'

Thats one of your faults!
Yes I know, I HATE being late, honestly even before my stroke I had this weird 'habit' of setting my alarm for 10 past the hour, 'got work at 9.. alarm set for 7:10..
This was something that stuck with me for so long.. I think I tried to do it after my stroke JUST to keep some of my 'normality' and seem as if there was still a bit of 'me' left..
I always have to start work on time.. 'If I don't start this project now.. I'll miss the deadline
(starts it 5 minutes after being given the brief)
*head overload - do it do it, do it, do it NOW!* 'brain injury kicking in..'


You'll make yourself ill!
''oo I've learnt to slow down and put my health first'' - comment made in a blog post ages ago.. so I guess I can be a hypocrite, I mean.. 'I have got a brain injury?' :)
I bumped into a learning support who'd seen me working 'too much' in the library on Friday as we have a deadline on Monday *YAY* - stress lifted off my shoulders..
'Lizzie, I know you and you work too much, you need regular breaks otherwise you will have seizures and get ill..' - I know she's right ( just like my mum and Liam).. 
It's honestly the most difficult thing.. 'working slowly'

Memory Loss
*Lizzie, if you don't do you'll forget all your ideas..* (This is my brain overloading double time)..
no one understands this though, I don't think I've explained that I get scared I'll forget all my ideas if I don't just START the work.. I also spent so long being 'rushed' in hospital, this was by Physiotherapy and Occupational therapy (remember the sheets given to us to 'asses our progress') I spent three loooong months in hospital aiming to just go home and 'get the work over and done with' people sick of coming to visit and me just wanting to leave.. 'ESCAPE 
People don't understand that.. they don't get that where I've had my brain injury I am still trained to 'rush, rush, rush' I was told these people were 'professionals' everything they said was right..
and no one has tried to teach me otherwise since I've escaped hospital *I'm still re-wiring my brain*..



I'm hoping that the people who have commented on my fantastic 'rushing skills' can now have some understanding about why I tend to rush and 'overload my brain'..
Do you?

and yes I have finished my project!!..

Equality and discrimination

We seem to live in a world where equality is non existent,

We seem to treat those with disabilities in a different way,
'No sorry, you can't do that..'
*but why? Why can I possibly not TRY and do something for once?*
Because I am disabled?..

(Getting on busses before 9:30)

The other day I was told I wasn't allowed on a bus because my bus pass didn't allow me on before 9:30 as it's a 'disabled persons bus pass' (I pay for this bus pass yearly..)
*you can all have your opinions and comment below but in my eyes I find it wrong*

It might be my brain not understanding how the 'system' works or understanding that someone out there created this really strange (in my eyes) rule..
As I still can't understand sarcasm or the majority of emotions people show; brain injury kicking in...


Equality - the state of being equal.

I'll just
'throw that out there' :)

To those who probably read these and think
'what the f*ck?'


Us as 'brain injury survivors' suffer anxiety from people discriminating and treating us differently from one another, we are ALL equal..

But you know me..

I've been treated differently due to my disability by people I know, people who know can trust me but still find my disability hard to 'understand'.

Disability discrimination:
When you are treated less well because of your disability..

I remember I had a conversation with someone I'd known for YEARS and they simply looked me up and down and commented
*you wouldn't be able to do that, you've had a stroke*

That's the worst kind of discrimination that 'we' struggle with
'You've had a stroke you wouldn't be able to do that'

Don't judge

My brain injury is much worse than my physical disability, that's something that's hidden, hidden under all of this make up and 'front' I feel I need and am forced to put on to try and show you I am NOT weak and I am confident.

Let your confidence shine bright;

Hold your head up and face the crowds of people discriminating against you.. because you're always going to receive criticism, from people you may know and people that you've never met and let's be honest..

Will never see again.
*YAAAAY*

Your comments and criticisms create a stronger person and thankyou ever so much for making me LATE for my appointment, as I wasn't able to get on a bus before 9:30 :)..

That's not me anymore..

I was classed as 'the stroke survivor'
"Oh yeah she had a stroke, the young girl that had the stroke"
Bla bla..
In the hospital I still am (by the lady who dished up my food)..

I'm not that anymore, well.. I don't want to be;

I live by my own 'rules'
Don't class me as something that is so crude,

My life
Yes I've had a stroke, it paralysed me, it stopped me doing what I wanted for about a year;
University, walking, having the function of my arm/hand and taking over my life,
I had a stroke that people would treat me differently because..
I let it take over my life, I let it act as if it was who I was..
let myself become the 'stroke'..
"Lizzie you're so obsessed with the fact you've had a stroke"

Get over it
Get over the fact you've suffered a blow to the head, it's so difficult but your recovery comes first, recover from what's happened inside your head, let your brain recover..
It's difficult but you need to be strong..

Be confident
How can you be confident and independent when you let this 'stereotype' take over the whole of your brain, your life, mind, recovery and most of all, confidence

I found
I realised my recovery is my confidence, is my independence and to regain the strength to just stop and think about myself (in the sense of RECOVERY)..

Goals
Set yourself bigger goals than wishing you could 'regain everything you once had' because the truth is; it won't all come back..
it won't all 'reconnect' it will try..
IF you let it.. do let your brain breathe;

You are yourself, you are strong and you need to stop and think  to recover;

'There is NO normal'
'Everyone is different' (inside and out)
'Your vulnerability shines bright when you let it..'

Brain injury
It stays with you forever, it will never go..
it will be in your head for the rest of your life, it's scarred you.. scarred who you once were..


My recovery was my confidence
My recovery started the day I realised
I am who I am, there is NO normal and life is what you make it; just like your brain

Who will you be today?..
Because I am me.
Fancy playing the name game?..Do you remember my name? :)

Living with Intracranial Hypertension..

Benign can I just add ( I don't have a brain tumour..)

My retina
The retina is -  the optic nerve around the eye (we all have them, its how you see..)
My retina will be forever swollen, my retina will be scarred for life, showing a white blob around the nerves that show within any MRI I have taken..

Idiopathic Hypertension (the retina)
My eye is similar...

"I can't lift my head, please can you help me?"..

I remember being REALLY unhealthy:
pot noodles
boiling pasta with oil/butter to make it extra soft
using those ready made pasta sachets 'just add boiling water'
drinking a bottle (large) of Lambrini every weekend (sometimes vodka & cherry aid (classy)
yes smoking weed (mum knows...)
BUT I never actually smoked 'real fags'..

I was 15/16.. I think, just starting my A-levels at my school (Chaucer Technology) ''Chavvy Chaucer''..

Laying on my mum and step-dads red velvet sofa (gone now).. watching Harry Potter (NEVER watched it since)..
My head slowly turning to the side & all I remember is this screaming noise coming from me,
I was on my own..
I woke up to blood pouring out of my mouth and I'd bitten through my tongue (I'd suffered my first seizure!)
I had suffered severe headaches for about 5months prior to this..
Just taking paracetamol and carrying on thinking it was stress related..
 'meh only a headache it'll go'

My mum always tells me:
"Liz, you become immune to the paracetamol/Ibuprofen if you constantly take them.."
*I was taking about 8 tablets a day*..
Constantly struggling to lift my head, honestly it was like something pulling on my spine refusing to let me sit up straight..

What is Benign Intracranial Hypertension?
"A build up of pressure around the brain - can appear suddenly"

"BUT you're not over-weight?"
"You're definitely not pregnant"
"You're on the pill though..."

This was the cause of my diagnosis..
THE PILL


I had so much pressure around my brain that I was seeing white spots in my eyes (still do..) they scare me as I see these before a seizure..
*oooo bright light...*

Lumbar puncture time!
A tube inserted into the bottom of the spine to 'release pressure from the brain'..
IT KILLS 
I still have a numb spine years later...

So whats it like?

I suffer severe migraines, seizures that until my stroke weren't diagnosed as epilepsy. I obviously get fatigued. Memory loss, 'oooo bright lights' A swishing noise in my ears (like when you have a fan on in the bathroom and your so excited for it to turn off) I get really hot flushes.

What do they do now?
do you want to know something REALLY cool? they do NOTHING.
'you've got an eye appointment' bla bla same old 'hmm you can see the retina is raised'..
If you're being sick, please come back :)

The causes:
Being over-weight (obese)
being on the pill (too much oestrogen)
Being pregnant
Tumour in the brain
Stroke (Yes I know what you're thinking..)
Lack of red blood cells 

Thank you to those who've read ALL of this long blog post, it means a lot :)

Don't be scared if you get headaches or are on the pill BUT get checked..

You see the discoloured blobs? thats pressure, and the white one is my blood clot..

I feel so bad..

"I can't remember their name"

I always just say 'Umm' to people if I can't remember their names..

This is where my brain injury kicks in;

The name game
Everyone I ask tries to make me feel better by comparing it to 'oo I get that too! It's normal.'..
For me it's an everyday occurrence, it could be someone I've met hundreds of times before, the day before OR someone who's really upset me in the past, people you'd just know! *oh hi, I know you.. you were really horrible to me once*

I remember saying hi to someone that I'd forgotten had actually bullied me at school and having to be told that we'd never actually seen 'eye to eye' ..

'Um I'm so sorry'
I just smile and politely and ask their name.. I'm referring to Pilgrims Hospice, where it's worse because you have to spend 4/5 hours straight with a person who's name you've forgotten.. they understand, they try to make it feel 'alright' but I know that it's a side affect from my stroke, it's the brain injury making a sly appearance..


Brain Injury
My memory is still affected, meaning I forget things constantly!..
(I always blog about this..)

The Unknown
I know the faces just not the names, why? I honestly have NO idea.. and this time google can't help me (damn)..


Picture Memory
I call it my picture memory, a place in my brain that stores all your lovely faces and our memories together, remembering things that are important and should be remembered,
I use this as an abbreviation when explaining that I've forgotten someone's name "sorry, I have a picture memory" (I think do this weird finger swirl action onto my skull/head) as if to refer to myself as 'crazy'..



Faces
When I see people in the street that I've seen before, I KNOW NOW! It could be from a conversation years ago or days before but a memory of something happening with the person I've seen will come flooding back into my mind..
which freaks me out, I then start thinking about the person non stop *GET OUT MY HEAD NOWWWW!* took long enough to enter it..



So that's my name game with a brain injury..

Don't say;
'you get that too, you just call it old age'..

Because one day, I will remember.

University..

I haven't started my third year yet but everyone is aware it's *the finish of university*..

And to whoever created our ridiculous student fees, the time where we all have to reflect on paying it back or apparently "I'll never earn enough money"
(as said by a family member..)
Let's be honest.. who will?


Anyway
When I FIRST had my stroke  I'd have the whole; "return to work (fenwicks) and returning to university meetings.. at that point I wasn't anywhere near ready, I could only JUST stand.. for about two minutes..

I'd just collapse into a heap and then cry because I was obviously really affected by my stroke and disability *anyone would be..*

Cognitive tests
I might of just been very fortunate but I was put through about 7 stages of 'tests' to check my brain and follow my progress as my main and probably only goal was 'to return to university' I was offered to go to a 'rehab' called Banstead in Surrey but when I visited I didn't like how the place was, it just seemed too 'focused on strokes' and I felt my stroke would become my life..



My neuropsychologist at the first stages of leaving hospital  told me I'd probably never return to university (I always mention this comment) because I was so used to people predicting what I would and wouldn't do..
NEVER let anyone predict your future, even if they are meant to be *the best professional within their job* especially after a stroke as you're so vulnerable that you'd believe anything, everyone's recovery is so different..

My Goal
I remember writing a list of goals with this lady who was just looking at me as if she was preparing to crush all my goals;
Walking
University
Showering alone
Not being tired
Being confident and independent
Being happy
And so on...

I did write 'get my arm/hand back but I as well as everyone else knows I'm far too lazy to do exercises and even aim for that..

Learning
Learning is really difficult and I still get learning support which I should be happy about as some don't BUT there is nothing worse than having someone follow you around university making you aware of your disability, as helpful as they are.. but I've cut down on the support, j now only have a writing mentor; essays, lectures and brief and more readings (as I really struggle to remember and memorise)..
I get extremely tired and fatigued at university because of the walking around and thinking..

Anxiety & university
I have regular 'meetings' about my epilepsy with the tutors, who I still think struggle with the fact I say 'yeah it just happens' I mean.. it is scary
I had a tonic clonic on Sunday in my sleep and Liam struggles to 'move me' as I go all stiff..
Like my last post I stated my anxiety comes from my epilepsy, the scariest part is leaving the uni and walking through the college gates as that's where no one understands my disability, I've been pushed and shoved into the road and then shouted at when I say 'sorry my balance is awful' by an older lady AGAIN who then called me a c*nt and threatened to throw her drink over me..

I had said sorry..
Mum
I still get my mum to read through my sketchbooks and essays as I hate it not being double checked, and she comments on the spelling mistakes.. I did get an offer for a dyslexic test but it was far to expensive and I think it's clear I am..


The Library;
I think the ONLY time I've used the library at university was when I was really hungover in foundation and we were given a 'tour', obviously this year I'll be in there a lot, I already have been.. I struggled to find the books to the point where I think the librarian could see my *confused face* ..
These are some 'notes' I'd written to find all the books, just before I pulled one out and about 5 dropped to the floor as I couldn't carry them all..
I've restarted a book about four times because I've forgotten what's happened throughout and feel like I've missed an important part of it (most likely)..

I won't give in and I'll keep trying, because life's about not giving up..


returning to university is the BEST thing I've ever done, it's probably my recovery in one word..

Year three *come at me bro*