Anxiety..

I don't live with you, you attack my brain;

You add to my worry and fear of something 'bad' happening..

When people say 'oh I've got really bad anxiety' I always think and wonder..but what actually is anxiety? What do you need to be anxious about?


ANXIETY - a feeling of worry nervousness or unease about something with an uncertain outcome..

*think I've just created a bigger anxiety attatck*

Because that's genuinely anxiety, you think about what it is and you feel it?..

Mines due to my epilepsy;

"Will I have a sezuire today? Who will help me? What happens if I'm walking and fall?"
Then I think "but this will just cause a sezuire? Stupid..."

And so on.. I think the majority of people with epilepsy get anxiety to be honest..

I have dents in my skull from sezuires, I just collapse
 (once on the side of a curb)

Anxiety takes every last bit of your surviving energy away, the LAST remaining bit of *oo I feel really good today, I can now walk outside..* because I do get like that, THEN I get anxious that I've just sat indoors all day (yes I do go out)...


I still get anxious when people are walking really close behind me.. literally breathing down my neck (who is that?! Why are you so close to me?)

You turn in an aggressive manner to try and make them realise they're creeping you out..

Brain injury anxiety;

It plays on your mind over and over and over and over..

But today will have a positive outcome so goodbye for now anxiety :)..

Living with Nephrotic Syndrome..

Living with nephrotic syndrome;

...This was NOT the cause of my stroke  The Daily Mail got it all wrong...

What is it?.. 

'Nephrotic Syndrome is a syndrome comprising signs of nephrosis, chiefly protein in the urine, low blood albumin levels and swelling.. Essentially; loss of protein through kidneys leads to low protein levels in the blood. including low albumin, which causes water to be drawn to soft tissues" (Just read below as my mum explains it better...)

Mum always used to say "Liz, your kidneys leak protein.. if you're not weeing you need to test your wee" (I'd get given these testing strips covered in about 7 different coated coloured squares that you wee onto.. they change colour depending on 'what's in your wee?'; protein, blood and so on...)

This was a regular occurrence when I was a baby, in and out of great ormond street hospital (the sad faced baby logo hospital) I've only recently discovered that my renal doctor who diagnosed me with this was studying it (how lucky am I!)..

Throughout my life I've had a mixture of 'drugs' but it's when I leak protein that the list extends; steroids (I was always the little bloated child running around the pool with a tshirt on wishing I was skinny like the other children..) 

'You have no lips!'..

I get and have had cold sores throughout my life, nephrotic syndrome causes my immune system to be weaker than anyone else's *stay away if you have a cold!!* this is why I have no lips, cold sores have scarred them... 

So think before you actually insult me :) 

I swell up like a balloon when I 'relapse' when I don't wee because you genuinely don't wee during a relapse.. 

You just swell up (ever seen Charlie and the chocolate factory? The big purple girl)...

"She'll grow out of it during her adulthood..."

Yeah yeah.. still waiting! I have regular blood tests and still have urine testing strips next to the toilet (I always get Liam to test his..) 

To add to 'feeling normal' he finds it odd...

Waiting room life;

Always so depressing, even countdown can't make this one any better... 

you're surrounded by 'home dialysis' signs and elderly patients with drips in their arms.. this is my main scare.. 

"Will I ever need dialysis or a transplant?" 

Hopefully not!.. 

Hungry, grumpy, wide awake, fat faced(moon face) and so on..

Younger;

My mum would be in and out of hospital with me, non stop.. and I still seem to question why she cares so much... 

Spaghetti bolognaise was my favourite, until you'd find pink 'crumbs' (crushed up steroids) they were bright pink! I always found these as mum could only give them to me by hiding them in my food or dissolving them (I can STILL taste them).. 

I have my blood pressure checked all the time; for stroke, hypertension and so on.. but it kills! You get scared watching it go up "is it okay?!" ..

Every photo of me as a baby I have the chubbier cheeks! Thanks to steroids. My second birthday - the day I blew out my candles and threw up all over my cake :) 

I can't drink to much milk

Have to many eggs 

Eat 'green veg when I'm relapsing' 

Wear next to nothing (wrap up warm!!) 

Hold in my wee.. 

There's probably many more things but my brain injury is kicking in and I've forgotten.. 

*possibly why I'm currently battling a relapse* 
next patient please..... 

WALKING LIFE!

It's here and it's MY version of walking..


I walk different to everyone else, I call and class it as 'my special walk'
My knee hyperextends backwards, apparently I 'won't have a knee by the time I'm 40'..

But then apparently I'd never walk again...

I get stares and people glance at the way I move my leg, the way my leg raises and touches the floor to step forwards.. giving me the ability to walk.

I reached my main goal;
I can walk!! I can do it.. everyday, I can move my leg, walk independently and manage to be confident..

My walking gate sometimes struggles; my hip swings outwards, 'the leg swing' when I put pressure on my legs (walking upstairs) my knee shakes *clonus* this doesn't bother me, you might stare at my knee in an odd way but I'm stronger than I look..

I have a splint that lifts my ankle as that's still paralysed, it's left scars and cuts across my calf, also a tan  line where I've gained enough confidence to show it off in public on holidays; and not care what people think of it.. because you judge me..

But I can walk..

I fall over sometimes (but my balance is always going to be affected, I realise that now)..
Walking down slopes causes a leg swing and my toes ache from the weight of my body trying to balance as I walk down them.. people stare as I'm so slow, but all I can do is smile;
A smile of ('this is me, this is who I am and how I've learnt to 'move')..

My walking is improving everyday and it will stay that way..
uneven surfaces are becoming easier & speed is much better.. I still can't run and I don't plan on learning

But I can walk...
With my head held high and smiling at the realisation of how far I've actually come...

"you'll be in a wheelchair for a long time.."

This is mainly a blog post to prepare you all for tomorrow's one,
for those who've just started reading my blog & to almost describe how it feels to learn to walk....



My goal! 
All I remember is a room known as the 'gym' situated at the back of the rehabilitation ward at Canterbury hospital.. I remember making it my goal to walk down the long corridor past the rooms where occupational therapy and the 'discharged' meetings took place.

Home Goals 
Where you make; cups of tea, cook pasta and fill out a goal sheet that consisted of things you were able to do
*YAY only one more to tick then I can go home!!!*

The Gym 
The gym was like a school gym, plinths were spread around, to be honest; ALL were being used by older patients as I was one of the youngest on the stroke/rehabilitation ward..
We had to do sit ups (6 was my main achievement.. then I'd just collapse)
"no please, I'm so tired, please can I just go back to bed..."
You don't realise how important 'strengthening your core is' until you have to stand up on your own..

It was FREEZING! the radio would play some local radio station..

Rather Be..  

I remember 'Rather Be - Clean Bandit' was in the charts at the time of my stroke (recovery)
and I can tell you one thing, there are several places I'd  rather of been than in that gym, I can't listen to this song now "Turn it off!!" but no one really understands why I hate it..


The Amazing Physiotherapist 
I remember my physiotherapist was literally amazing! his name was Richard and he helped me with so much, from gaining confidence to being stronger and much more..
He stopped me walking in a diagonal line and made sure I was 'walking properly' because there is a right and wrong way..
I actually walked past him when I was out clubbing for my 22nd (last year) that was odd.. he didn't recognise me..


"You'll be in a wheelchair for a long time.. I'd say a few months?"
Her name was Lizzie, Richard wasn't in on this day, I remember I asked the same question everyday 'Will I ever walk again?' 'how long will it take me?' I used to ask my mum how long it took me when I was a baby to 'learn to walk'.. I thought it'd be the same timescale..
But I don't think it was, her lip all shaky thinking
 'I can't answer this question, it's impossible'..
I looked at the wheelchair and just burst into tears, thinking about how much I hated it now, but I'd be out in public in it.. 
It hurt SO much! my bum was so sore and the way people patronise you when you're in one is ridiculous..

Anyway, I still picture Lizzie's face and just squint my eyes thinking 'I will prove you wrong'..

I CAN STAND!!
I won't say names but I remember, being able to stand up (on my own) and actually take a few steps.. obviously I wanted to video this moment,  I was laughed at and given a look of disgust, because 'I looked weird'..

The Leg Swing
The majority if not all stroke survivors who've learnt to walk again 'swing their affected leg'.. from the hip, I call it the 'leg swing'.. It's apparently, where you can move your leg and your brain just assumes that swinging from the hip is the 'right way of moving it.. cause the motion is 'up and out'..
IT HURTS! 
my hip still aches sometimes, I can't cross my legs because my hip doesn't bend properly..
I still swing my leg but only when I'm really tired.. sometimes I stumble because it'll get caught in front of the other one..

Proved you ALL wrong
I used to wait for my community physiotherapists at home on my mums sofa.. longing for the day I could just walk down the road again and be confident on my own..
My walking stick lent against the arm rest of the sofa (my step dad bought me a shiny black one because in hospital you get given an old wooden one) I was 20 going on 90... 

2014 first day home! 

2014 - medication and wooden sticks 

the first time I stood up, ON MY OWN!

Balance & confidence 
I knew I was stopped walking outside because of my balance, even now I regret rushing it
(I have scars on my hands, face and legs from falling over as my balance us still quite bad)..
But I just NEEDED to get out, I needed to be that independent and confident 'young woman' I was wishing to be.. sitting in watching Jeremy Kyle is so boring!


Physiotherapy
I don't get physiotherapy anymore, it's ridiculously expensive and I can walk which I feel as though this is the 'main thing'.. I've lived a life wishing to walk and now I can, I'm happy.







.......A Video of me walking (comparison) will be uploaded tomorrow.......
tomorrows blog: WALKING LIFE! 

It's a brain injury thing'

Welcome to our world..
 I'm going to let you into a pain free brain injury world :) enjoy the ride...


What is a brain injury? (if you were to fall over)...
A Brain injury can be classified to a mild if loss of consciousness and/or confusion and disorientation is shorter than 30 minutes...

Hi I'm Lizzie's first brain scan! :) 

and I shall be disorientated and confused forever.. 

You have had a stroke, you need to accept it..
I used to hate my brain for 'giving up on me'
I used to blame myself for everything that my stroke had 'caused' the; paralysis, depression and so on..
I was living in a land of hatred and spite, spite towards anyone and everything.
(even my MacBook suffered a blow to the head..)

I'm going to refer to stroke survivors and those suffering with brain injuries as 'We'..

We're NOT weird
- We live just like any other person, in a world of aiming to be happy and enjoy ourselves, just our concepts and views towards life have been affected..
meaning;
- We get angry a lot quicker
- We can't process emotions quick enough to understand whats right from wrong
- We get emotionally attached
(Recently I kept repeating myself and explaining how I'd sung a song on karaoke about 7 times)
*laughing non stop* no one knew what was going on..
I also burst into tears at a program about Princess Diana
*mums hugs are the best*..
- We are quick to judge and assume things;
because we are jealous, jealous of the 'normal' life you live/lead with probably NO problems but you complain of hurt & upset?

As the years follow on and I pass through the years since my stroke that I once let slowly destroy me even more;
my mind body and soul..
Affecting those around me; pushing away people who genuinely cared and tried to understand
understand a life that would never be understood.
"Liz, I'm really trying here!" - mum
*Just GO AWAY! leave me be woman!!*

Understood 
Hello, it's me..
(no I'm not going to break into an Adele song)
Can you understand me? Can you feel my mind reaching out? trying to grip onto the last piece of sanity? because I need you to try and understand.
Please, please try to clear away the fuzziness my brains causing, the blur that shows in my eyes making my eyes seem misty..
Making me look confused and phased all the time, I promise I'm trying I'm trying to find a way out of this 'mess'.
No? I didn't think you would understand..

Fatigue
It tires you out, every last piece of your body just wants to rest. But I won't accept it, I won't let you beat me! you're trying to ruin my life, take control of who I am. I don't want this brain injury anymore..
Trying to memorise things is hurting my brain, trying to picture everything I do is tiring me out, you're so stressful!

A different Life
You crave a 'normal' life, but why?
why do you want to be like everyone else?..
In-fact what is normal? have you ever seen someone and gone ''well, thats normal!'' 
*ooo that explains it all! normal here I come!!...*


Anxiety 
Please don't question our minds and how we think, remember we're different to you..

Vulnerability
But you said we were friends? You said you'd meet up with me and we'd do 'normal' things together? are you ashamed of me?..
I promise I'll try and walk better when we meet up, I'll walk up the stairs and in a straight line just like you.. Then no one will stare at us. I promise I'll be happy and smile.




You need to 'stay strong and positive'
as quoted by Carolyn Simpson (a YOUNG stroke survivor)..




What is a stroke?

• Ischaemic - Where the blood supply is stopped because of a blood clot. 
• Haemorrhagic - Where a weakened blood vessel supplying the brain bursts.  

So, hows the recovering going?
Are you normal yet?... 

lets go shopping!

everyone loves shopping..
when they have money (window shopping bores me)

I've never done a blog post on shopping and how managing to buy stuff or even rummage through clothes rails,  I don't try clothes on because it takes forever with my disability and I'd get too fatigued to buy the clothes or carry on shopping..
I try to and try to stop myself spending ridiculous amounts of money on stuff I really don't need.. (this is my brain injury kicking in, before you start saying) 
''yeah but I do that, its 'normal?!'.. 


''Do you need any help?''
*the patronising and really confused look from the shop assistant appears*..

You just KNOW their scanning your body up and down trying to 'figure out' what the 'story is' because thats it.. you're a story..
it's always when I ask for a bag..

''Excuse me''
Once I was shopping in boots - Canterbury and obviously needed a bag..
''Excuse me, please could I have a bag?'' because for some reason they don't have them on the scanning rails (then sigh when you ask for one) Some people refuse to get me one, this is when I decide my arm NEEDS to be shown..
I need a lot of help when putting things into plastic bags, obviously the one arm/hand situation kicks in.. I mean,
You try opening a bag with one hand..

The Patronising look 
Do you need any help? Are you Okay? Are you alright? 
URGH YES I AM FINE! 
It's the same woman every-time I go into the shop, which annoys me because I hate feeling patronised..

The Technique
I do this thing where I grip the handle and slam it downwards so air enters the bag and it opens (this also draws a lot of attention to me as it's loud).


''Could you put them in the bag for me please?''
In the art shop that i'm a regular customer in, I let my arm 'release' which means hang downwards and sometimes bends slightly *the punching position*  I do ask for help, when I'm paying for stuff as I know they can help me and it makes life easier, Also the que of people behind me won't moan.

''Hopefully this works!''
I forget my PIN number, even though its been the same since I was 15. I do explain sometimes, ''I have a really bad memory, I'm sorry.. hopefully this is the right one''.. I get an odd look from the shop assistant as they don't know how to respond. then I smile..
:)

The anger 
I have a 'resting bitch face' that I tend to use quite a lot when shopping and walking, this isn't a good thing as it causes a lot of agro and makes me look really rude, Ive only just started saying 'excuse me' and not pushing past people, when they're walking REEEALLY slow. I like to just get shopping over and done with.

Standing on my own two feet..

and an AFO (the famous plastic splint that you can all now see)..

My carpet isn't the cleanest but then neither is my splint.

''I've asked for a chair and table''

Today me and Lydia (works for Pilgrims Hospice Canterbury) visited ASDA in Canterbury to collect money for Pilgrims Hospice, I had been 'told' how popular the charity is and how generous people can be when donating, but I guess you just assume people don't bother *mainly because I just walk past charity tins and collectors*..
Lydia had asked for a table and chair "so if my leg hurt or I became too tired to stand I could sit down"

My goal
I made it my goal and aim to avoid this chair, I mean I sat on it once because I needed to sort my hair out and put the tin down BUT stood up straight away after feeling lazy. I remember being in a wheelchair just wishing I could stand and waiting for the day I could just jump up and wander off..

Lets play a game 
*now Lizzie, you need to stand up tall and smile.. don't be rude!* I said this to myself because I thought about how I wanted to 'stand out' as if I already didn't next to a huge 'Pilgrims Hospices' banner, holding a tin and looking exhausted (stupid fatigue).. I smiled because I like to make the most of having a 'straight smile' no droop included :)

'Take my strong hand' 

Never seen the film, but I know this quote is 100% from a film. I managed to hold the bucket with both hands, sometimes even my left (had to open it myself and grip it onto the handle as it's still unable to open). 

You can Stare 

But this time I really don't care. People stared *when my arm was 'loose' and hanging, because it does the gripping motion and raises up, as if I'm going to swing for someone.. I'm not. 

this is why I usually hold it, because it gets caught on people, things and looks 'odd' and I've been told that it looks stupid (won't say by who but you're a twat). 

Shaky Leg  (Clonus) 

A 'normal' thing for stroke survivors, Just like the 'leg swing' and lack of confidence. My knee still needs 'repositioning' when it gets 'tired' This is when the muscles are going 'crazy!' Like shaking uncontrollably, I've explained before I look insane, especially when standing up from a chair because it looks as if my knee is trying to run away.. BUT it helps me realise when I'm tired or 'getting tired'..

still stayed standing though :).

Confidence 

Believe it or not, standing wearing a blue t-shit with 'Pilgrims Hospice' holding a bucket collecting money, is such a confidence boost.. After my stroke because I'm able to 'start conversations' and meet new people. 'you gain the confidence to be independent and 'embrace' your disability. Like I ALWAYS  explain; confidence and independence are the main parts of recovering from a stroke..  whats a life without the confidence to be independent? 

 Fatigue Time 

I'm soooooo tired! that I was  actually excited to come home and drink a 'cuppa' *posssibly thanks to my new mug?* or maybe I'm getting old (birthday in a month).. 

As I walked home my leg started the 'swing' I notice this when I'm tired because it upsets me - reminding me of when my 'gateway' was REALLY bad.. 

(not gonna lie, I walk really well now) 

I'll add a comparison video soon *when I can be bothered* 

:) 

Lets give in to my fatigue and nap! *you know you want too Lizzie* 

How cool is my new mug though?..