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/

I know you didn’t want a pole dance 🌚

If there’s one thing that pisses me off about my dyspraxia it’s the physical aspects of balance and trying not to be as clumsy as fuck.

Over the years, I’ve developed a good few coping strategies to deal with my Dory-from-finding-Nemo memory that it’s not too bad

* Also when I forget I’ve ordered something cute from Topshop and it turns up- that’s always a plus! *

And yeah sometimes it’s frustrating, but the clumsiness and balance is something else.

Take buses for example.

Easy task right? 

You get on the bus.

You sit down (if possible)

Or you stand gracefully, managing to stand your ground right?

Hahahaha- not if you’re dyspraxic.

I recall one occasion quite vividly when, standing, clinging to a pole, I accidentally gave an old lady an involuntary pole dance neither she or I had planned for, or wanted. Here’s hoping she didn’t die of shock and horror shortly afterwards.

Or that time I knocked a friend’s drink over with my elbow.

Or the time I dropped a full on bucket of water, all down myself

Or when I take what feels like about six billion years to come down one flight of steps. With tuts from the people behind me (sorry not sorry)

Forgetfulness is more acceptable, as my friends and family are very forgiving and I can say ‘oh sorry! I completely forgot!’ Which is fine

A lack of coordination makes for many an embarrassing moment. Sometimes even humiliating by the stares I get. It makes room for more judgement.

And that in turn only makes me less and less confident.

But I just wish people would give it a second thought.

Rather than just staring like ‘what the fuck?’

Help someone out.

My attempt at a poem about disability …

Society Still Judges me 
I was born premature

3 months early 

Tested for disabilities

And society judged me

I was fine

I’d struggle in life 

At school 

But I was doing fine, considering 
I had Physio until I was 7

To strengthen my legs 

I was given insoles

And society judged me

I was discharged 

A wobbly walker

But it was better 
My mum raised concerns 

With my primary school

That I was needed help

And society judged me

And she was dismissed 

Rebecca isn’t a naughty child

Rebecca is fine 
I got to high school 

Quiet, shy, and self loathing 

I went to councelling at 15

And then society judged me

I needed self esteem 

I was clearly just stupid 

Because I couldn’t keep up with learning at the pace school wanted me to

I went to college

Child care BTEC

It was overwhelming 

And then society judged me

‘You aren’t cut out for this’

‘Lacks common sense’

Heavily disorganised and a mess
At 17, I dropped out of college

My stupidity was proven 

I just could not keep up: I’d failed

And then society judged me

I was mentally ill

Depression, they called it

Drugs and CBT
At 19, better now, I reapplied to college 

I did A levels

And then society judged me

I wasn’t stupid

I had Dyspraxia and would get help

I was bright 
I passed my A levels

I went to university 

Things started to get bad again

And then society judged me

Councelling 

Failing to meet my own academic expectations 

A void of extreme homesickness and loneliness
At the same time, I was in pain

Physical pain 

‘Joint hypermobility syndrome’

And then society judged me

Here’s a leaflet 

There’s no cure

The best of luck with your studies 
In the middle of this

Were a few women

My study coach, my mum, and my friends 

And then society judged me

But they did not 
‘You’re too young to be disabled’

People would tell me

As I stood with my crutch in hand

And then society judged me

But you aren’t in a wheelchair 

But it’s not like you have cancer

And society still judges me
But I’m chronically ill 

But I have a specific learning difficulty 

But I battle with my demons daily 

And yet society still judges me

How does your disability affect you?

Asks the PIP assessor 

I’ll pray for you 

Says the total stranger 
You work so hard, you know you best

Says my support network

Who fight my corner when I cannot

And yet society still judges me

But they do not 

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.