My first trip..

Today I had my first uni trip with my new brain and everything..

I woke up early so anxious about how I'd cope; walking around London, a museum and getting home..

'Ouch! Please slow down, I'm so tired'

I mumbled to my teachers..

My splint rubbing my arm sticking out and my shoes turning in at each side. 

I wore an arm splint just so people will realise I have something wrong with my arm..

'I'm just going to the toilet..'

I wobbled down the train as it moved, gripping as tight as I possibly could, digging my nails into the train handles, feeling the blue yellow and black padded striped cushions drift past my fingers.

'Oh shit, sorry!'

The train edged to the left leaving me balancing on a leg that's weak and having no arm to grip on to the chair, 

I managed to fall into a guy in my class, 'i'm really sorry I'm really uneasy on transport and my feet'

I then carried on to use the loo, gripping the hand rail used for support for wheelchair users or elderly people or me..

I finally reached the chair, struggling to grip seats on the way back. 

Waterloo east..

Walking to the imperial war museum, through the hustle and bustle of London streets, crossing busy road and turning sharp corners we reached our destination 

'I'm just going to sit down, I'm sorry I'm so tired'

We walked around the First World War and Second World War exhibitions, 

The Second World War made me cry, I honestly think it was about the fact I had to sit down 10 times during the walk through, as well as watching videos and viewing pictures of the suffering.

As I reached the end I finally ate, my blood sugar so low that little white dots were taking over my eyes, my hand shaking like a nervous person, my leg clonus going insane making my whole body wobble.

'I'm sorry, I get like this when I need sugar'

I ate feeling fine I carried on.. 

One step at a time;

Holding the right hand side rail I stepped down 4 flights of stairs to the bottom floor..

People rushing past me and nudging my shoulder..

I got to exhaustion and needed to get home. 

Walking as fast as I could to the train, missing it by a minute. 

My head spinning and my sugar getting low, everyone's silhouettes spinning around in my view, my eyes throbbing and my hand itchy from my splint rubbing ..

Then changing platforms, 

'Excuse me please could I sit down'

'Urgh okay!' The fat old lady grumbled under her breath

'Thank you so much'

As she walked away analysing why I needed a seat so bad, making me feel guilty.. 

I could Hear my nans voice in my head saying 'Liz you shouldn't feel guilty you need to sit down'

As I sat watching everyone take their journey home from a long day at work, I overheard a mans music 

'Bitter sweet symphony' you know the song with the strings playing.. 

That made me smile. 

The whole day spent realising just how much my stroke has affected me; mentally and physically.. 

In my head knowing that everyone will be saying 

'But Liz, you did it..' 

Excited to reach Canterbury west and just grab Liam or my mum, to lay my head on my pillow to sleep..

Then for tomorrow to start and for more realisations of just how much my stroke has damaged me. 

 

Turning disabled

Life changes more than you can imagine when you become disabled and left with a disability.

'Do you need any help?'

'Did you need a hand?'

( yes clearly but leave me alone..)

'I need to learn, I'm fine!. I've done it before I can do it again, I'll just become better at it'

'Liz accept the help of its offered to you' 

I went to sleep capable of everything; walking as fast as I could till I finally ran, lifting boxes and carrying bags switching from hand to hand, only wobbling if I'm drunk, smiling and eating without wiping my chin..

Then woke up; unable to move, no use of anything I could use or do before, sitting in a chair being pushed around the destination usually being where the person wheeling me wanted to go, then transferring to a stick that made me look weird, creating a ball of anxiety in my lost brain, struggling to complete simple tasks; cooking, carrying food around, getting in and out of a bath or shower. And so on.. 

I lost and still haven't got the use of my arm or hand. 

'So do they say it'll come back?'

(Who's they?!)

'So do you get any physio, that might help?'

( nope unless you fancy being my physio?)

'So what can you do with it?'

('IT?!' it's actually still an arm attached to my body just refusing to attach to my brain) 

Some people assume you're unable to do anything when you're disabled, regardless of if they've seen you do it before.. 

They take over tasks that they see you trying to complete; reaching for a cup, putting on your coat, putting their hand out when you walk upstairs and so on... 

'I think if you did this it might help it come back, you're young, you've got a higher chance..'

( are you assuming that I don't hear that all the time? Are you telling me once again how to live my life?) 

Is it because I'm disabled?...

You assume people in wheelchairs are incapable of standing up or walking a few steps.. 

I'm not in a wheelchair but the stares I got when I was were ridiculous, people associate wheelchairs with people who are incapable of being able to do anything, why?

People stare at my arm everyday, people watch my lips move to see the droop, people stare at the outline of my splint on my leg wondering what it is, people look at the other side of my body and wonder 'why is that side normal?'

'What is normal?.. 

Normal no longer exists when you're living with a disability, unless you start believing in yourself and complete tasks you once did before.. 

Some people are born disabled and some people may break a bone becoming disabled for a few months.. 

But when you're left with the unknowing and people assuming they know how your recovery will end up, it's different.. 

Days go by, i'm definitely flying high..

I'm never going to reach a whole goal to 100% recovery, no one ever does.. You remain weaker than before, struggling with an acute brain injury, living life's given challenges still telling people you're 'fine' and not 'too tired' continuing to prove to people who've stuck by you and believe in you that you can do things you did before. 

You get better happier and somewhat stronger in your weaker body.. 

You gain memories in a new pathway your brains created. Whether you like it or not, it'll be you; your personality, motivation, initiative, life and it's all been created by you. 

Even when you're doubting yourself you've created this brain so stand by something you once lost.

You stop using things you were so dependant on before; outside and in the house; shower stalls, hand rails and so on.. Things that you would assume only older people would need or use.

Because I guess you thought this is something that only happens to older people.. 

Didn't you? 

You start to walk more, regardless of how your leg; works, bends, straightens and touches the floor 'normal' enough for others to compliment something you worked so hard to do. 

Is it normal enough for you? 

Are you proud? 

You don't show the; depression, anxiety, stress or struggles because it makes you look as weak as you feel.. Inside and out. 

You stand as strong and straight as you can, in a body and life that once tried to give up on you.

Now you're flying higher than you ever thought you'd be. 

My stroke of luck and positivity

You may loose all confidence, independence, strength, memory, limbs, determination, motivation and so on..

You may at first feel like it's the end of your whole world

You loose friends whom you though would stick by you no matter what

You may get sick of the 10+ tablets at numerous at parts of the day,

The hospital appointments that clash with your personal life

The struggle with giving up things you used to love doing

All because of what happened

Your life can change in a split second...

Mine made me reevaluate my whole life; choices, decisions, attitude and weaknesses.

I've been given amazing opportunities since,
Local public speeches
Meeting and greeting othe survivors
Sharing my story in the media
Exploring different options to take in your life
Having the chance to re-live my life.

I love it, I used to sit in my front room moaning grumpy and putting myself down.
Then I got up and realised I didn't want to live this kind of life forever, I wasn't going to let my stroke defeat me. Make me weaker or ruin my chance to succeed and stand out.


Never give up.
Never give in
Believe in yourself
Things get better when you start believing in yourself.

So thank you stroke.

It's a brain injury, I'm not fine.

I get tired I get confused I loose motivation or determination to complete tasks or do something I might be asked to do..
I live in a distant world to any other person who's living without a brain injury,

I tell you 'I'm fine' when you ask how I'm 'doing'..
I'm doing nothing accept living a distant life hoping the many dead brain cells in my brain will magically reconnect.. (Recovering)
'I'm not okay..
Only a few people understand this as I've only opened up to some people about my 'I'm fine thank you' response..

I'm hurting, grieving, in pain, I'm confused, I'm suffering with one of the hardest illnesses..
A brain that doesn't work, giving me weird responses to questions
'Do they speak amsterdamish in Amsterdam?!'
 You laugh, you look at me with an odd expression and I can't understand why, I don't know what emotion I'm receiving from you..

I don't trust people
I trust a fair few, mainly family but not random or strangers.. I guess not many people do,
I have to leave my house hoping that whoever is walking or driving near me would help me if something happened, I analyse people as I walk if their in front of me because I wonder if they would understand my distress of waking up from a seizure..


I forget
I have memory loss, I forget what I've been asked to do, times of people to meet, dates of events, how to cook..
It's improved but plays tricks on my brain sometimes..
Making me feel like I've resorted back to day one when I couldn't tell the time.

I walk with support
My brain may of bought part of my leg back, my splint holds my ankle up to make my 'gateway' like everyone else's.. I get so happy when you tell me I'm walking better or faster.
Because I'm stuck with this walking pattern for life..

I'm emotional,
I cry over the smallest things, I'm like a two year old, responding to the simplest things with tears..

I can't focus on more than one thing
My brain gets tired, I need rest and sometimes help with stuff.

This is my brain, like a constant daydream
Waiting to be over and let me return back to a life of understanding and confidence to complete every goal, task or test people set me.

I'm not failing I'm becoming stronger
My life is like a rollercoaster on the way up, never stopping or going backwards.

It's been a while..

Firstly sorry to all those who actually read my blog posts i've been quite busy recently;
you know 'trying to be like everyone else'

I wrote my first essay on an artist whom i've always loved;
Tracey Emin - very disturbed artist but I find her work so interesting.

After handing it into my mentor; (the lady who reviews my work, notes, essay's and checks i'm getting enough help).

She read through my version,
I asked mum to read it as well and obviously as any mum would she made notes..
I decided to hand in the copy i'd edited and written as i'd much rather love to see what I might receive ( grade wise).

''Elizabeth that's amazing! you'd receive an A if you changed; this this this and this..i'm going to give it to a tutor to review it and grade it too, i'd be very shocked if they didn't give you an A''

''Oh my god, i've never received an A''

I have weekly counselling at uni,
She's in the 'assessment period';
checking, my history what I need help with and my emotions.

I cried last time as she asked about my parents splitting up, I never really realised exactly how that affected my school life and how emotionally unstable it still makes me, 12 years on.. (I think)

She asked me about past 'relationships' and current ones..
I spoke about how I've had a few boyfriends whom were abusive, controlling and took advantage of how vulnerable I am after my stroke, making me write blogs to 'big them up' Which I now regret.
They still show my progress, but I can reassure you that I wasn't happy.


She asked me to explain everything about my stroke..
I cried as I felt a bit light headed and it made me anxious
''Elizabeth do you still find your stroke hard to overcome''
.. '' I'm sorry please can we just not talk about it, It makes me feel so uncomfortable''

I then spoke about my mum having cancer and how that affected me, I cried about that as it feels like a lifetime ago but I know it still affects my mum everyday.


The other day I collapsed in town, whilst christmas shopping, although it wasn't a seizure which I was happy about, I'd only fainted..

i'm 5 months seizure free!!
(fingers crossed)

Although i've been getting severe headaches recently, which I think are caused by too much pressure in my brain ( signs of my intracranial hypertension coming back).
Which scares me..

Today i'm waiting for my technical support people to install all the software to help me; type on my macbook, write essay's and so on..
To be honest the guy just told me to ''take advantage of what we offer you as you have a budget which we pay for..''
So I have, a dictaphone, you know that thing that records everything... not video wise, only voice for lectures.

Some of the software I know I won't need..


I recently visited Amsterdam;
intact that was last weekend.
me Liam, my mum and stepdad went..
Yes I tried 'Weed' and hash cake, I mean you kind of need to experience everything..

and it apparently helps with epilepsy..

that's my excuse.

I walked so much everyday.


i walked about 2 miles everyday now, and no it's not just shopping.
I'm aiming to loose weight as everyone knows, once you get into a relationship you eat to the point of  putting on weight, then moan about it even though you enjoyed the food..

Also;
I don't use my shower stall anymore!
I stand up and wash..
I do have to use the hand rail to get in though, because it's slippery..

I still wear my AFO ( leg splint) but, I walk faster apparently..

So my recovery is still continuing,
I can't use my arm or hand still, I tried to receive physiotherapy but they told me ''i'm too far on in my recovery for them to help''

So they can piss off..


''over and out'' as people say..