Diary of a Chickonwheelz: Catheter Catastrophe 

So Wednesday was a routine catheter change, except it wasn’t.

So I’m always anxious before changes since my A & E visit, especially it was the nurse who couldn’t get it out last time. I was meant to go to the doctor for my friend dizzy to calm me but I forgot.

Anyway she deflated the balloon and began to tug and the pain was horrific. I breathed through it but it was too much and not budging. The nurse knew she’d fucked up because she kept wittering on about her new puppy and then proceeded to tell me to go to A & E… sigh. I knew what awaited me. She was also saying ‘if you see a urologist…’ love we just see a nurse and then go home. She didn’t even bother to ring ahead.

So anyway, 15 minutes waiting I was called through to see a nurse and low and behold it was my lovely Andrew who changed it when it got stuck last time.

Obviously my heart rate was high due to anxiety and me and gas and air don’t have a good relationship as it induces a panick attack.

With me sweating buckets and gripping my mother’s hand, flinching at any slightest touch.

Two minutes later and what felt like hours to me (by the way, nobody tells you on G and A that you can hear but can’t respond.. scary) he got it out and inserted a fresh one. He was also disgusted to learn the attitude of the nurse and that they’ve arranged for it to be changed every eight weeks because it risks infection. 

On his advice, we went to my GP for a referral back to urology because they said it shouldn’t be that agonising. The doctor suggested that my bladder tube had narrowed so it may require another operation but anything to get rid of the pain. 

FACT: when you pee blood but don’t actually pee it out naturally you CAN feel it burning.

I couldn’t have got through Wednesday without my mum. 

Whilst I was there I asked about any new ME trials as my flares are getting worse and their aren’t any. She also was appalled that I hadn’t heard anything from AMHS and I firmly believe speaking to a physiatrist will help me get past this point. (Also, if I don’t get an appointment from urology in the next eight weeks, she’ll prescribe me a dizzy for the next change.

Surprise surprise! No news on wheelchair.. 

What I’m working on

I’m currently waiting on a Call on the Midwife fanfiction each female character gets their own short story per chapter.

I’m starting off with Trixie overtired and attending a premature birth on a stormy night with a cankerous mother in law – will there be consequences?

Note: I do not own the rights to CMT but my inspiration comes from the books/BBC drama/Heidi Thomas and cast/ the time period 1962.

Swansea Bravehearts: disabled football [pics]

Win for the Bravehearts! I’m so proud of my man! It’s making me consider an extra curricular actvity but a) I have more conditions to deal with b) I’m so tired all the time!

So glad I managed to go today, despite my discomfort it was nice to make my other ‘alf smile.

Say what you want about people with disablities being fragile and incapable but these guys are fierce.

My man scored three goals and there was a right warrior of a girl who banged her head but kept on playing!

Still don’t understand the rules and the referee was totally biased! 

It kinda made me reminisce about my active days. Family say that I gave up swimming due to not ‘wanting to be in the paralympics’ (I mean, yes because it’s society view that if your disabled and do a sport it’s like, ‘why aren’t you competing and making able bodied people feel inspired?’ I’m such a cynic!) but, my heart wasn’t into it as I got older and it became repetitive not to mention the muscle pain when I got older and not being able to navigate a tampon. I’m glad I learned though but, I won’t be returning to the pool anytime soon.

I know some people think I hide behind my ME and that it would be better if I was more active but I consider being active as having a shower every evening.

So no, sports aren’t my thing but, I pushed through for my boyfriend and that’s what counts.

I may consider stand up comedy!

Diary of a Chick on Wheelz: Thursday

This week I’ve been struggling with hip pain and fatigue so much so that I burst in to tears in college after doing an hours work.

That aside, Thursday I felt like I was 15 again! I had tonnes of energy, very little brain fog and I felt so positive! I was even able to stay up till 10pm. Best part of my day was talking to my friend sally who runs wheeling along 24 and also has ME so it was nice to swap tips, stories and most importantly rant!

Whilst family support is lovely, having a friend who knows what you’re going through is great.

Needless to say, Friday I was exhausted and in pain again but that’s the roll of the dice.

Unfortunately this hip pain and discomfort means I can’t be in my chair for long and college is agony, resulting in this: 

So that means I have to skip my boyfriend’s first football match tomorrow (Swansea Bravehearts) and I feel like letting him down but who knows? At the last minute I may feel up to it.

Still no news on new chair despite me ringing. Plus the dreaded catheter change on Wednesday…

Weirdly, the carers service want to supervise a bathing session just so they can put it on a report. (Even though they wouldn’t help normally because of the lifting). We’ve decided to decline the service as their always late and by the time my parents are home and helped me. They won’t cook food my mum has prepared and set aside due to health and safety, they’ve left the front door open and twice have pulled my catheter without apologising and they struggle to follow specific instructions like ‘go to the third cupboard along by the sink and please get the jug to empty the catheter’ They bring a vase, my mum’s peonies have never been the same since. Also, they can be quite patronising!

Meanwhile the search for the PA continues!

Meanwhile Swansea has agreed for me to proceed with my uni application now I’ve submitted ‘evidence’ that my body doesn’t function. It would be easier if it was a stand up/ fall down test. (My mum actually did that once when the DWP demanded I go to their offices to prove my disability.. SPOILER ALERT: I fell but my mum caught me…always)

There you go, there’s you update!

Poetry: Race of life

Question: Using the techniques of caesura, pathetic fallacy and imagery try to convey a person’s emotions. 

I’m in the race

Of life, sprinting

 

Questions tumble in my head

My stomach filling with stones

Of dread.

 

Too many paths to go down

With not enough light,

 

Which way is wrong and will I be right?

 

The sky is grey and heavy

Like my heart. I’ve

Got along way to go and

don’t know where to start

 

The winds of change are

Telling me to keep going

And then I’ll see

 

that as the sun burns

through the cloud, my

heart will lift and I’ll be proud.

 

I may be soaked in sheets of

Fear but as it dries

I know the end is near.

 

The finish line keeps

Moving but I won’t break my stride.

 

In the race of life

I can but only try.

Hugging a grave stone

My prompt today in class was a child hugging a gravestone and I had to write a flash fiction piece.

I heard the pop and fizz of another can being opened and my heart sunk. I may be three but I was intuned to every sound and movement waiting for daddies anger to erupt by a volcano and more often than not the bubbling inferno was quenched by the pale ale that never seemed to run out. 

I remember the rain lashing down the skies grey and heavy like our hearts. It may have been winter but I was wearing my tartan dress with no tights and my sleeves grubby. My hair hadn’t been brushed and it seemed days ago since I had nana’s shepherds pie.

I was playing with my dolls when daddy fell asleep in front of the fire with the back door. The room was dirty and that made me sad but I didn’t cry. I miss mummy I needed to speak to her and ask her to come back but she was playing statues in stone in my friend, Jesus’ garden.

The pavements were digging into my bare feet. I was carefully to dodge the puddles because mummy said if you get your feet wet you sneeze.

It was dark by the time I reached the squeaky gate and the grass in his garden was as tall as a jungle!

I found mummy and begged and pleaded. I muttered and sobbed as I hugged her headstone and where she would usually be squishy she was stiff and cold. 

A while later, I felt a hand on my shoulder. It was daddy with a pair of strappy sandals in one hand and rose in the other. We laid down the rose and went on our way. The rain fell as we passed the pub and daddy looked like our old puppy, Rover wanting to go in and play. He stared longingly but instead walked on, and squeezed my hand.

As we came out the shop laden with food, new undies, the lemon stuff that washed the loo which I wasn’t allowed to touch and we headed back home.

The sun shone and I knew mummy had listened. Sometimes it takes losing someone you love to make you realise how lucky you are to live on.

Feedback hangover

So, it’s been two days since I’ve had my feedback from the Jane Judd Agency and to be honest I’m a bit deflated.

Yes, I know it’s not good to get precious about ones own writing but I’ve been working on this novel for two years, those characters got me through the hard days. 

Is it natural to feel a little gloomy? It’s almost like a feedback hang over.

I actually wrote 450 words of a modern love story and I felt thrilled but, when I look in writer’s magazines and see all the dos and the do not’s I feel overwhelmed.

So, I suppose it’s good to receive feedback this early in my career so I know how I can adapt and move forward.

I WILL SEE MY NAME IN PRINT 😊