My hidden illness and living with it

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

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

I never even knew that a stroke involved the brain.

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

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

You don't realise until you get told to do something and you forget,

'Liz remember your tablets' 

Most important thing to remember and sometimes I still forget 

You find everyday hard, 

Fatigue is the worst part, 

I need at least 8/9 hours sleep a day or night,

Obviously my epilepsy is triggered by not enough sleep.

My brains still damaged but is recovering..

It's mad to even think that there's random cells in my brain that aren't connected,

What are they doing? Floating in my skull?

It genuinely makes me feel uneasy.

'So how do you walk on your leg if it's numb, what does it feel like?'

It's odd..

It's like waking up with a numb arm and not being able to process using it, I do it because I know that i need to walk to get on with my life.

I can't feel it hit or step on the ground, I can't feel it bend or when I lift it.

Walking upstairs scares me, when I see the first few steps I think 

'Shit, what if my knee just gives up and goes weak?'

 

My leg does this thing that I joke about when it happens;

It shakes so much that when I stand there it's making my whole body shake.

That's my brain doing that

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

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

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

Everything's a blur,

I only recognise faces not people, if you've upset me before then I'll remember you.

If I love you I remember you..

But I can't put names to faces in my head..I

"Oh you know so and so did this"

Oh haha, yeah.. Wait who?!?!

My hidden illness involves mental health, 

Anxiety, depression, fear, self harming (sometimes).

My self harming happens only to my left side.

"Liz talk me through why you do it so I can understand"

"I miss the feeling of my arm and leg, for a split second I can feel it again.. And it feels okay"

My neuropsychologist looks blank.. 

I'm not surprised, she doesn't and can't realise how it feels..

My hidden illness creates my personality

I know I'll live with it for the rest of my life, regardless of what I do.

I get moments where even if people speak to me I'll assume everyone hates me.

"I know you don't like me, but why?"

"I do like you.."

In my head thinking;

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

I find opinions really hard to accept;

"If I were you I'd change this part of your work to make it a higher grade"

"Oh is it bad then?"

I'll walk away feeling like I've failed.

"Liz you're not fat you're just a bit bigger than you were"

'Oh so you think I'm fucking fat then?!'

Something I hate telling people but it's my blog so I kind of need to share it,

When I was younger with my kidney illness I gain loads of weight and then the steroids make me even larger.

I have stretch marks all over from weight I've lost then gained.

and I still have scars from self harming.

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

Paranoia being the worst part.

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

'I'm really impressed, are you proud?'

Oh errr yeah I suppose I am,

I smiled with the throat clench feeling of nearly crying ( happy tears)

Uni is like a new test and goal everyday.. 

Not like the old ones from physio or ot or my neuropsychologist..

I have to get up extra early, get ready, get my stuff together and walk to uni, 

The walk takes 20 minutes, I quite enjoy it..

I get to listen to music and hold my head high as I walk through the uni sign..

I have a mentor called gaby,

She's quite old but so lovely..

'I'll meet you once a week everything we talk about is confidential unless I feel concerned about your mental health'

'Okay.. I have had a history of self harming diagnosed by my doctor but I'm really happy now and that was months ago'

She told me she views everything in a positive way..

'If it's raining I always think of a positive, at least I don't need to water my garden!'

She smiles a lot too...

I like her and having someone to show my work to and receive information and useful comments is really helping.

I write every note down from all my lectures which are two hours long, I have ocd with uni stuff;

Pink folders, sectioned folders for designated sections, different coloured pens and a diary..

I love it, the ocd of trying to fill up empty days has gone, now I'm busy everyday.

My learning support assistant is so lovely, she checks if I need any help all the time.

My class 'mates' are so kind and everyone's so different, not trying to be the version of 'normal' I spent so long trying to recovery to be as I aspired to it.

My recovery is on a new level;

Building my future and starting to look ahead.

I have so much support from friends family and my boyfriend.

A lot of you knew the situation I was in last year and how abusive it was I definitely wouldn't of been allowed to do what I am now.

When I'm writing my briefs down I always weirdly write; 

'Task goal and aim'

This is because the first part of my recovery everything needed to be a task and aim to be a goal.

This time it's an exam I'm setting for myself, no one watching over me forcing me to 'recover more'

I'm just like the rest of you..

I fit in

Ive made friends and hopefully these ones stay around..

They all know about the stroke, and they all accept it.

I'm confident

More independent 

Happier

Busy and enjoying being just how people wanted me to be..

Normal.

This version of normal that people moan about;

Getting up early, working, learning, walking, being tired...

I know that this time it'll be much more interesting because of how I am.

'Normal' 

'So what have you been doing for the past year and why have you chosen this course and what's your name'

I thought about it after the first few people nervously spoke aloud..

Turned to my learning support lady, who is the best person I've met.. And I thought I'd hate them

Who wants someone following you around?..

'Do you think I should say this, I mean does it sound okay or normal??'

' my names Elizabeth ashmore, I was half way through year 1 till I suffered a major stroke and was determined to finish my course'

' yeah that's fine!'

So as my turn came up I said it...

The guy next to me stopped me after and looked at me, 

'I thought I recognised you! You were in the newspaper weren't you!'

'Oh god, yes I was'...

I walk to uni feeling confident, I even got barged into the other day 

'Sorry!!'

'Oh no it was my fault I'm sorry!'

I smiled and felt so happy..

They kind of understand or are at least accepting me for who I am.

My class is huge, full of a higher majority or guys but girls are slowly showing up..

One girl has bright blue hair, the rest have tattoos..

My tutor is so supportive,

He's sat with me after every day and answered my questions..

'Sorry Hugh I'm probably really annoying haha'

'Oh don't be silly! We all know you'll need help!'

I love just getting up knowing I'm going to be busy with something other than looking at the same four walls,

You always get nervous before you start and you overthink..

As I did and you might of read in the last blog post,

'Mum I don't think I'm ready'

But I am..

There's so much support its unreal, my lsa even gets the lift with me..

We did a group project and I took over my group..

'What are you most worried about uni (your concerns )'

'My group has said'...

' learning English as some are international students..

'Now what are you excited for..'

' a guy in my group kept saying 'fuck yeah' after every idea he came up with and as I like winding people up I kept saying it after every quote I thought of..

He laughed 'you're funny I like you!'

'So what did your group think of..'

' well my group weirdly said we're excited for idealistic arguements!' I stopped and the tutor looked confused..

(Should I say what I'm really thinking or will I get in trouble)..

'You know when you come up with a shit idea and someone else disagrees with you and you debate in the group'

Everyone laughed with me instead of at me.

We enroll on Friday and get our summer project grade today, I'm so nervous that I couldn't sleep..

I'll receive my timetable soon for the next term.

And for the first time I'm excited, even more so than when I took my first steps..

You appreciate something a lot more when you get a second chance and start..

Even if you don't experience loosing the ability of doing something, make the most of it even if the weird version of 'normal' you've created is boring, tiring, hardwork.

You never know it could be taken away at any point.

Wake up

Get ready

Work hard..

Dear fatigue..

For those who don't know what 'fatigue is' it's nothing to do with being fat.. It's a side affect or illness you can suffer from making you extremely tired, even if you've slept for 8 hours.

Dear fatigue;

I've started uni now, I'm doing so well.. Because you haven't ruined it, yet.

I know you're not used to doing anything accept eating and watching TV..

But this part of my recovery is the most important, that brain that you sometimes disturb is going to; learn, be confident, be independent, communicate and so on..

I guess you'll find out anyway.

Uni makes me sleep more, I crave my bed and I haven't done that since I'd work and go to uni before the stroke..

You're like a strange annoying person who you try to avoid but they come back.

You used to be so bad..

I thought you'd destroy my life because I couldn't stop sleeping.

I know you and my brain are working so hard to let me create my future or at least work at it..

So don't let me down.

Please?

My inspiration, thankyou cancer

Something i dont really talk about as it still makes me upset but still proud. And i know upsets my mum more than anything 

Is my mum and her battle with cancer, 

You hear so many stories of how it can hit you and you suffer but you never ever think itll hit a loved one. You never realise the struggles and upset it brings to everyone 

Three years ago my inspiration was suffering with one of the main killing illnesses in the world. Cancer 'the c word' 

She doesnt thank it because of the damage its left her body with, i do. 

Thankyou mum and cancer for creating the most inspiring woman i know, 

Watching her smile through all the shittest times of you ruining her life and watching her pull through everytime, watching her get up and go when she was weak and hurt. Full of pain and wanted to give in. 

Thankyou for making me watch someone pull through struggle get up and go fight and still recover by determination and motivation.. 

You have made me want to carry on and show my mum how much of an inspiration she was too me, thankyou mum & strangely thankyou cancer 

❤️

Dear damaged brain..

To the most damaged brain I've come across out of people I know;

I know you can't hear me or understand much of what I do..

I mean you might hear the voices not my head talking to you, is that a normal thing?

I know you can't give me access to all my body limbs 

But you've tried, you've tried to reconnect as much as you can, I think..

You've reconnected a lot more than I thought you would,

Not going to lie, but I thought you'd fail after waking up from my accident

(And I hope the voice in my head made that sound loud and clear, perhaps you could try harder to bring me back to normality)

I know you've been through a lot, I do understand you must be so confused.

In fact I suppose your confusion is exactly how you create my confusion for the world to see.

But they can't see it, they can't see any of your bruised and disconnected cells, damaged and cut off by a bit of blood.

It's quite funny to think that something that is covering your whole body can curl into a ball and lodge it's way to ruin something so important, something that everyone has, sometimes people faint over the sight of blood. And how fast it pours out, I get excited.. 

No more blood clots brain!!

You won't be bruised again,

I know you've sat through; the scans, appointments, emotional moments and the grief that the blood clot caused.

But thank you for putting up with it.

The scans that surround you with metal plates and try really hard to show doctors what you've decided will reconnect.

I know you've dealt with loosing all your old memories I stored into you from birth; upset ones, happy ones, strange ones, funny ones and  many more, but I've forgotten those maybe you've lost them.

You're going to make new memories now. 

The memories you've manage to regain might not of been my best ones but are quite nice to think about.

Even if you do try to make me remember how I used to be, you bastard.

So thank you and prepare for new memories, don't let go of these ones please..

I know you've dealt with loosing two limbs at the same time, and a weak face.

You've given me the greatest gift, being able to walk, you've created the best day of my life and right hand down, it's still making me smile remembering the day I took my first steps.

You've probably lost all motivation and determination to bring back my arm and hand, you know people are still cheering for you to just push those little cells that connect the arm limb, they still believe you'll live again, but I don't.

Maybe that's why you haven't chosen to give it back? Are you angry with me? Are you disappointed in me? 

I am. But I can still eat food so I'm kinda happy.

I know you find everyday tough and you can't escape to just get out of my body, unfortunately you're stuck with me for as long as you may live, or choose for me to live.

I do let you wander off sometimes when i dream, when I daydream into space. That's when we can both escape this strange and damaged  life, this fucked up world where were all trying to be normal.

We both get a time to reflect and be happy (kind of) maybe we don't always show our smiles, maybe we don't show our happiness or how we love how far we've come in a year.

But we've travelled this journey together..

And we will forever..

You find some thing's really hard, I get that, everyone does ( normal people I mean)..

You do ache and get tired but most normal people do. ( normal people again) *lol*

But what I can thank you for is;

Bringing me the ability to create a stronger Lizzie

Bringing back a more confident Lizzie

Bringing back a happier Lizzie, sometimes anxiety free ( we can work on that though, can we try to?)

Beating a serious accident and proving that I can carry on..

You're letting me return to doing things I did before,

Maybe when the electrons in my brain play up and make you out of control, leaving me to have a seizure and probably scare people, when you shut down for a few minutes? 

I've no idea, because we both get another chance to be out of control of thinking. 

We both get upset but we push through

Because dear brain,

We can and will push through together, sometimes with help, but I know we can carry on this journey and succeed.

So thank you