Poem: priorities 

This morning when I got up

My main priority was to finish off those few tweaks to my assignment

Tonight, I have achieved  the following: showered, fed, and dressed myself

This morning when I got up

My main priority was what I would wear to go out with friends in the evening

Tonight, I sit with a hot water bottle, drugged up to cold undead eye sockets, on prescription medication

This morning when I got up 

My main priority was to make it to my lecture 

Tonight, I come in from a hospital dash- it was one of those days when my perscribed medication was doing nothing 

This morning when I got up

I watched the able students of the student body pass my window without a care

This evening I am wiping the dirt off of my walking aid, and hobbling to the kitchen 

That morning, just after my 21st birthday, my priority was to be treated for my pain 

This evening, 4 years later, I still wait

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Poem: priorities 

This morning when I got up

My main priority was to finish off those few tweaks to my assignment

Tonight, I have achieved  the following: showered, fed, and dressed myself

This morning when I got up

My main priority was what I would wear to go out with friends in the evening

Tonight, I sit with a hot water bottle, drugged up to cold undead eye sockets, on prescription medication

This morning when I got up 

My main priority was to make it to my lecture 

Tonight, I come in from a hospital dash- it was one of those days when my perscribed medication was doing nothing 

This morning when I got up

I watched the able students of the student body pass my window without a care

This evening I am wiping the dirt off of my walking aid, and hobbling to the kitchen 

That morning, just after my 21st birthday, my priority was to be treated for my pain 

This evening, 4 years later, I still wait

Poem: priorities 

This morning when I got up

My main priority was to finish off those few tweaks to my assignment

Tonight, I have achieved  the following: showered, fed, and dressed myself

This morning when I got up

My main priority was what I would wear to go out with friends in the evening

Tonight, I sit with a hot water bottle, drugged up to cold undead eye sockets, on prescription medication

This morning when I got up 

My main priority was to make it to my lecture 

Tonight, I come in from a hospital dash- it was one of those days when my perscribed medication was doing nothing 

This morning when I got up

I watched the able students of the student body pass my window without a care

This evening I am wiping the dirt off of my walking aid, and hobbling to the kitchen 

That morning, just after my 21st birthday, my priority was to be treated for my pain 

This evening, 4 years later, I still wait

This is a disability assessment 

This is a disability assessment
This is for Personal Independence Payment
This is death
This is humiliation 
This is judgement day 
This is the fine line between scrounger and innocent 
This is the difference between food bank or a food shop
This is being able to heat your home
This is the key your freedom 
This is the key your destitution
This is your fate- decided
This is a prompt for a UN enquiry
This is a test 

This is a trial 

This is ‘yes’ ‘no’ ‘sometimes’

This is the way the government defines disability
This is wrong 
This needs to stop 
This kills disabled people
When will that be enough?

Image credit: http://www.scriptonitedaily.com/2013/03/29/our-last-good-friday-easter-monday-beginning-of-the-end-for-uk-poor/

Chronic pain: what I’ve learnt

So yeah, on top of dyspraxia, a nervous-anxiety-riddled-disposition, I was diagnosed with a chronic illness roughly 2 and a half years ago now.

I had a flare up of pain in my knee and my back when I reached about 16 (I was just coming to the end of highschool) and it went within a few days. Odd. Then it happened a few more times. So I saw my GP, and was packed off to Physio. He told me I was hypermobile, I said, ok whatever.
Then, as I started college for the second time, taking A levels in history, sociology, religion and philosophy, and ICT,  aged 19 (long story for another post, maybe- there was a lengthy battle with my mental health inbetween) I started with awful pain in my lower back and knees. A lot worse than the time before.
A year later, in the time I was supposed to be preparing for university, I was crawling up the stairs at home to reach my room.
So I went to my GP.
Again.

And again.

And again.
Then I sat my exams, with difficulty to sit in the 2 hour exam without shuffling round on my seat in a great deal of pain.
I went back to my doctor.

I was informed it was growing pains. At this point I was 21 years old, a pretty lanky, slim built young woman who filled out and had plenty of growth spurts by then.

I went to collect my exam results in the August, I’d got into my first choice university. A Russel group, all singing, all dancing one. A ‘posh’ uni as my friends put it who were going to polytechnics. So I was moving out the following month to start my degree in History and Sociology.

I went back to my doctors once more, because before I went anywhere, I needed to know what was going on with my body.

By chance, it was a locum doctor on shift that day, who agreed with me that the pain needed more investigation, and I was sent to a rhumetologist.

At the rhumetolgist appointment, I was diagnosed with joint hypermobility syndrome.

In lay men’s terms, it’s a chronic condition where the joints have a wider range of movement than they should (that’s the ‘hyper mobility part- it’s being double jointed) and having that wide range means that soft tissues and ligaments become damaged and painful, which then becomes widespread (as painful as fuck, might I add)
Fast forward 2 years later, and my life basically consists of uni and hospital appointments, because I don’t have the energy for much else.

I’m determined to finish my studies, but my God, there are days where I just want to give up.

I sometimes get really upset that I now can’t remember what it feels like to wake up and not feel pain everyday.

But in other ways, the condition has made me a lot stronger.

I’m a very determined, very strong willed,  and I’ve developed empathy on a level I didn’t realise existed.

I’m also a lot more forthcoming- if I don’t like you, you know about it.

I’ve lost a ‘friend’ in these two years.

But I’ve also become closer to others,  who really will me to carry on and not give up!

A true test of character really does come, when life really throws you a curveball in the form of a chronic illness- and it’s a real test of friendship too.