Not the Adventure I Wanted but Glad I Went

Oh no I can’t get it up

Come on ,push harder it’ll work with a shove.

The ramps too steep and I don’t have the power

No I can’t get out and walk up ,I’m disabled flower !!

Never thought I’d be climbing a mountain to get on a train

I need an electric wheelchair that’s all terrain.

At last …We’re on and parked in our space

My son shouts out “What’s that smell!” with a frown on his face.

Although conveniently situated is space we have

Is right by the toilet so the whole journey smells bad.

We arrive at our station, I’m worried about getting off.

Why aren’t the ramps longer no more adventure please I’ve had enough.

I slid down the ramp like tony hawk on his skateboard

Hard to control, but impressive where’s my round of applause.

I start to relax thinking the next stage is easier

Pavements in comparison are a heck of a lot flatter.

Out of the station I gasped with dread

Give it an hour I think I’ll be dead !!!

The pavements are cobbled with no lowered Kerbs

For fuck sake it’s 2020 things should be accessible it’s absurd!

It’s pitch black and I’m having to drive on the road

A cars coming towards me ,I have nowhere to go.

Trying to stay calm as my kids are with me

Feeling anxious now and needing a wee.

The cobbles don’t help they hurt to drive over

My body in pain, where is my future grandsons baby shower??

Ducking under bushes like we’re on Bear grylls

We were having a laugh too but I could have been killed.

Got to the baby shower we all had and amazing night

Celebrating the imminent birth of my grandson, i can’t wait.

Party’s over we set off , the journey back to the station filled me with dread

Some good news ,my train replaced by a bus I can’t access so they’ll get me a taxi instead.

I just drove right in and sat in the back

Driven straight to my front door I couldn’t ask for better than that.

We pulled up and the kids got out first

Come on mr taxi driver open my door so I can reverse!!!

I’m so tired and I really want to go to bed

This challenging journey has given a sore head.

He’s pulling the handle but nothing is happening

I’m locked in the taxi you’ve got to be joking.

I really thought he was taking the piss

It could only happen to me this.

He called his boss and asked for advice

Can we put the heating on ,I’m turning to ice !!

Kids are inside watching the tv

I can’t believe this is happening to me.

His boss called back and said call roadside assistance

They are sending someone out but at the moment he’s some distance

I started laughing when they mentioned calling the firemen

It would be hilarious if I’d have to be cut out by them

My eldest son brought us a brew

Then I had a thought, what if I need to use the loo

I don’t know why but I laughed even more

At the thought of just wetting myself all over his floor

Three hours later the roadside assistance arrived

I was so glad that I held my bladder as he had to get close and lay on the floor by my side

He took off the panel and fiddled with the lever

It had come apart he fixed it what an amazing geezer

The back door was open and I was finally set free

I think the taxi driver was also really happy to get rid of me

Going to the baby shower was totally exhausting

It was scary but we survived we’ll feel better in the morning.

Joanne Quinnell

Me stuck in the taxi !
Journey there
Pre flustered look !!
My new grandson.

Please Hear Me Wheelchair Services Need Improving so Social Isolation can be Eliminated

It’s not fair!

There’s all these lovely community support wellbeing groups but people can’t get there.

If you qualify for an NHS wheelchair then the waiting list is 3 to 4 years

Stuck inside your house going insane, lonely ,crying lots of tears.

Parents not able to go out with their children

Children with their friends

Where’s the quality of life in this.

It needs fixing, this has to end.

Joanne Quinnell.

Gasping for Air

I can’t breathe or think clearly because I’m suffercating in my own emotions and thoughts

A blanket of fear , guilt, inadequacy, hopelessness has covered my face

At first I fight it , but I’m so tired i don’t have the strength to keep running this race

I just want it to stop …..

All my thoughts to go quiet and stop making me work so hard

To drift off to sleep, the storm in my head to go calm .

I tried ,I did but how much can one person take.

One thing after another ,my mind just never gets a break.

I just wanted to be a good mum and enjoy my life with my kids

Illness and disabilities prevent me from doing all of this

Confidence lost replaced with nothing but guilt and disappointment

The feelings of failure ,I have no future . I wanted more than this for myself and my kids.

The vicious cycle keeps going around,

I’m so tired , lonely, no friends or comfort to be found.

I’m struggling to do this anymore

Not finding many reasons to breathe or keep fighting for.

Like a pawn that’s not needed in a game of chess

Maybe it would be easier if I sacrificed myself to help win the game make it easier for everyone else I guess

All I know is that I’m struggling to breathe

I feel so alone I don’t know what I need.

Joanne Quinnell

Life after Disability

I used to often think about my past

My memories although nice they’d cut me like glass

Just like waiving a red rag in front of a bull

Or looking at a glass that’s only half full .

Why torment myself with the life I once had reliving memories of experiences I can now longer have.

Instead i must get busy looking at new ways to do things so more fun can be had.

Joanne Quinnell

Lonely nights after a Long Day…..

Stop hurting me please, I can’t take anymore!

Ok so I’ve been having fun trying something I’ve not done before .

I should’ve known you’d respond this way,

I just wanted to feel normal why’s that not ok ?

How long are you going to punish me for having some fun ,

Body and spirit broken, you are such a cruel one.

Just lying here trying to sleep as you go in for the attack,

I have nowhere to go, I’m powerless, I lay here, eyes leaking, on my back .

When you have a chronic illness that causes you pain ,

The nights are so long that they drive you insane.

Joanne Quinnell

What would you do ?

So that’s it then ?

There’s nothing you can do!

What if you’re in my situation,

With this stuff we’re going through?

I’m not asking for money ,

Although I admit it would be nice.

I want Support and help for my children ,

Or maybe some advice .

On your websites it says you are there for my kids,

In reality it depends on our postcode .

You say you are sorry it’s just how it goes.

I can’t believe support depends on just where you live?

A few miles down the road and it would have been a different story,

My children would have been supported immediately .

The systems not fair not when our children will suffer ,

I continue to ask for help for all these children, me , this chronically ill mother .

Joanne Quinnell

Isn’t it strange to think you started as a dot

A significant moment in life that means such a lot .

A seed is planted growing at incredible speed.

Us parents trying to prepare for everything you may need.

Reading books and asking friends,

While you are comfy inside mums think the pregnancy will never end!

Lying awake with secret fears

Can I … what if …I can’t…. maybe some silent tears..

The moment arrives you are ready to come out

Some gracefully, most not…….often you’ll hear your mum shout

Can’t Move Forward Whilst Looking Back…..

I’m so tired,

My brain is wrongly wired.

In life i have no luck ,

Often feel like giving up.

The thing that keeps me going,

Is the excitement of not knowing.

What a new day will bring ,

Hopefully, Love ,laughter amongst other things.

Sometimes I feel sad ,

Thinking of the life I once had .

I have to let that go,

Find a new path to travel .

You can’t move forward whilst looking back

I’ll visit my memories when it’s safe and I’m on my new path…..

Joanne Quinnell

What is Social Isolation?

A definition, “Social isolation is a state of complete or near-complete lack of contact between an individual and society. It differs from loneliness, which reflects temporary and involuntary lack of contact with other humans in the world.”

In layman’s terms what does this mean? Why does it happen?

We live in a world which seems to struggle to adapt or welcome things or people they know nothing about.

There are a large number of people that , through no choice of their own, seem to have been forgotten about. The saying ignorance is bliss comes to mind.

It doesn’t matter if you are young or old , if you have worked all your life and paid taxes into the system or been on benefits ,you get treated no differently.

The only variables would be dependent on how much money the local authority have got and pot luck !!

You see when you get sick there’s no one there to support you. It’s a big minefield of trying to survive. No sign posts to point you in the way of financial or practical help.

The worst most horrendous thing is the support (or lack of ) with mobility aids and home adaptations to support independent living.

I’ve had people contact me upset because their relatives who are being discharged from hospital but can’t even get upstairs or outside. Being told that a commode and a sink to wash in is adequate.

People want to go out and be more active but they aren’t provided with proper wheelchair assessments or equipment.

Roads and Kerbs are horrendous for wheelchairs . What are councils thinking putting cobbled pavements down? Certainly not someone who will be in agony with every bump they go over.

Bus drivers who dont want to get out of their seat to put the ramp down so you can get off the bus. That also set off before you have parked up properly.

Pubs and shops that are old and do have steps but provide no ramp or haven’t adapted their premises so people can get in ,despite this being made law.

You can be a prisoner in your own home not able to leave because of the steps and no money to adapt it.

Lifts that they turn off at train stations at 6pm despite trains still stopping there ,leaving that station in accessible.

If people have young children they are often isolated too as a consequence.

So not only are people striving to overcome the physical challenges of what illness /disabilities they are going through, how it affects your confidence because you have to learn to be a completely different person, almost reinvent yourself. They have to deal with the minefield and rejection from society.

We are in 2020 people!!!

Attitudes need to change.

It’s not right that some individuals can’t go far because they need a toilet with a hoist to change their child who is now a stocky teenager. It’s not like it’s a new issue…..

How would you all feel if it was you ? What the answer is I’ve no idea but it’s clear that something has to change.

Everyone should have an adequate wheelchair and equipment to make their life easier and more meaningful.

Thankfully I finally got some adaptions to my home but many more struggle and they shouldn’t.

Joanne Quinnell

Stuck

Go back the good memories will haunt me

My past life will tease me

Beat me up

Leave me abandoned and forgotten on the floor.

Move forward

But how ?

It’s so hard to move in this thick unknown terrain

I keep stumbling

I’m so tired

I’m alone

I don’t know how to do it

Where does it lead to?

I could just wait for someone to rescue me

I’ve been waiting for 8 years and nobody has heard my cries for help.

I need to do something

Or do I?

Do what?

Is there help?

Is it worth the effort ,pain and monotony of trying to get unstuck?

I’m not sure anymore.

If it leads to frustration and disappointment I may aswell just accept my fate now.

It seems I don’t have much choice anyhow……

Is your destiny what you make it or is it planned ?

I can’t find my way in this strange land.

JQ