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

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 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

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

There’s a Storm…

There’s a Storm is on it’s way…

Quick pull down the sails and stow things away.

It came unexpected so we weren’t prepared.

Main sail sheets got tangled and the actual sail teared.

Below deck the boat was badly listing ,

We’d radioed for help but no one was listening!

Bruised and battered huddled together we lay,

This storm showed no signs of going away.

Move on storm leave us be,

We can’t take anymore my family and me.

I stumbled on deck to check all the rigging ,

Parts of our boat were breaking off and going missing.

We need to do something we are going to die,

Please someone help us I screamed up to the sky.

I try to be calm so the kids don’t panic too,

But my shaken demeanour’s too easy to see through.

What’s up mum ,what’s going on?

I played down all the fears I had on deck whilst i was gone.

The boat is damaged and nobody hear our cries,

The Storm continues on and on in my head i say my goodbyes.

Lost at sea nobody around to hear our calls,

This boat slowly sinking I tried to keep it afloat but couldn’t I’m sorry I send my love to you all …..

Joanne Quinnell

This is the reason why I’m passionate and sometimes get a little bit too emotional at trying to get support and raise awareness for young carers and their families in my area.

Any situation that goes in and causes damage to a family can feel unbearable to deal with.

I guess being a sailor that was the best analogy for me.

Sometimes you just get dealt the bad hand .

It feels like you are sinking, powerless.

These services are supposed to be out there to support our children and us so we can steer our own way again.

They aren’t young carers are socially isolated, drop out of college struggle with friendships .

Families still dont have access to correct equipment wheelchairs etc so they can spend time with their families.

It’s a vicious horrible circle.