A poemy type story type thingy ma jiggy I started to write a long time ago about a & e visits and well just a bit of my journey really. I’ve finally finished it so thought I’d put it on here.
One night in my Journey
Its my favourite Green Giants.
‘yeah – we’re going to take you to hospital is that ok?’
Mum helps me put on my shoes and my coat. My ‘just in case’ bags are at the door and ready to go.
We get into the back of the ambulance.
I sing to myself throughout the journey, desperate to distract myself – head in an NHS hat, well multi purpose sick bucket if you’re being pedantic.
and wait some more.
‘Hi lana, well this is getting in to quite the habit meeting like this isnt it’ – says the nurse as the paramedic books me in.
I’m wheeled down the corridor.
Mum talks to the nurse as we are shown where to sit.
I sit on my usual chair. We wait
A nurse appears with the usual gift.
Unfortunately not chocolate raisins. Oh no. Just a sexy pot in which I can piss.
I expertly waddle over to the toilet and pee in to my pot… right to the top, not spilling a single drop.
Its colour? Red. Blood red.
I take it back to my seat. I show mum. We joke about how beautiful the colour is.
The nurse calls my name. We go to bay 15.
She takes my sample, asking the question I am asked a million times.
‘Is it usually like this? are you on your period. You’re not?! Thats YOUR WEE?! Are you Joking?’
No. I’m not. Unfortunately This is my pee now. My kidneys love to join the party, didn’t you get the save the date? I don’t think I did, perhaps it was lost in transit.
I lay down on the hospital bed. My mum stands by my bedside, phone in hand, updating my dad.
Its a text.
The sender…? my sister.
“I love you minions” – I respond “I love you grullians” – like we always do. Silently, we both know the significance of each others support, now more than ever.
Its another one from a different sender.
Halfway through replying, I’m interrupted by a familiar face.
Our usual nurse appears from behind the curtain.
‘Hello smiler. what arm should we try first today?’
Mum winces as they fail to put in a cannula for the third time.
Every vein they try jumps out of the way.
My veins do what I sometimes wish I could do…
Run away and Hide.
Half an hour later, my blood has been stolen and my body is being invaded by the ineffective poison they call pain relief.
No amount of chemicals will ease my pain.
Mum stands there, looking at all the many cotton wool lumps stuck to my arm by the itchy sticky tape.
She looks at me.
I want to burst into tears. I feel guilty.
I apologise to my mum for the thirty third time in the three hours we have been in this second home of ours.
She tells me to stop apologising. She tells me its not my fault.
I struggle to breathe.
Is this how my life is going to be from now on… is this it?
‘Hi Alana, I’m the consultant on tonight’ says the red faced doctor, as they come through the blue curtains and shakes mine and my mothers hands.
Why are the curtains blue?
Why is everything in this hospital blue?
Mum says my name.
‘So, how can I help you tonight?’ the doctor asks.
I want to say it would help if you could find a cure for my illness.
Instead I tell them what happened this time.
They stand and listen carefully.
I make a joke that isnt even funny. I only say it because its true and I’m nervous and don’t know how else to deal with all of this.
We all laugh.
‘So, Ehlers Danlos…thats hypermobility right? no? oh… OH… No, thats not just hypermobility is it… POTS, whats POTS?… Posture otters what?… oh orthostatic… oh so you get dizzy when you stand…’
I calmly correct them.
They call me a complex case.
They go away.
They examine me. They comment on my various EDS traits. ‘Oh you do have EDS dont you!’
I telepathically tell mum that we have a googler…
The message must’ve missed mum and reached the doctor instead.
They admit to putting my many labels in to google.
I resend a message to mum saying no shite sherlock.
Mum gets it this time and gives me a knowing look.
They send me for another xray.
I’m greeted like an old friend.
We come back.
They chase up my bloods.
They give me more medication.
We laugh about something that isn’t even that funny.
If we dont laugh, we’ll cry.
Mum stifles a yawn.
Yet again I am overwhelmed with the guilt I feel every second of my life. She shouldn’t have to go through this. None of my family and friends should have to go through this.
I look to the ceiling – trying my hardest not to cry again.
The bright lights shine uncomfortably into my tired eyes.
I look back at my mum.
Although she’s been standing for hours, she still refuses to sit down. Insisting she is fine.
She updates my dad, who also feels guilty that hes not with us.
I then feel guilty knowing he feels guilty.
Mum finally sits down. Shes tired. Its 0345 am.
I close my eyes.
I hate this, I hate that I never know the reasons why. Why am I here? Why is this happening to me?
Am I ever going to be ‘normal’ or Has this sickness finally won?
The cuff on my arm inflates again…
Mum suddenly stands up and reads the numbers out loud.
‘Its low but not as low as usual.’
The nurse comes round to write in the numbers.
She takes my temperature.
She squeezes my shoulder and leaves.
The doctor returns.
The results are in.
‘I’m happy for you to go home, Ring your teams in the morning, but please, in the mean time come right back if you dont feel well’
I’m sorry… Was I here because I feel well?
They give me more medication.
We walk out of the department.
We say see you soon to the reception staff.
We leave the hospital to bird song.
We get a bus.
We get home.
We go to bed.
I lay on my own bed in my own home and I cry.
I cry in frustration.
I cry in relief to be home.
I cry in guilt.
I cry in anger.
But most of all?
I cry in the knowledge that I will have to relive this day again in no time at all.
And I do.
Again and Again.
But you know what?
Because I’m still here.
To keep smiling is to keep fighting as My Natalie once said.
I know why its happening to me.
everything in my mind suddenly clicks.
Its not because I’m a horrible person. Its not my fault, its just the way it is.
I suddenly know why this life is mine.
I was put on this earth for a reason. Everyone has a purpose. Mine is to teach. Its to help people. Its to help those that need me. My body is broken but my mind and soul is not. Life is not yet over, its never too late.
I am very much alive.
I love you. All of you.
have I won…? Yes.