I am a 24 year old Graphic Design graduate, I write my blog to raise awareness of strokes, epilepsy & disabilities in younger adults. - Please comment share and follow me :) - I hope you enjoy following my recovery.
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..
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!' :)
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?
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
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'..
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....
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?"
"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'mstill 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!!..
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 :)..
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? :)
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 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'..
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..
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 :)..
...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.....
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...
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!
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?...
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.
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*
