Saturday, 19 December 2015

My Life

This isn't nothing,
This is my life!
I'm someone's daughter,
someone's wife.

Yes, I have a disability,
But that is only a part
Of me.

There are many things
That I can't do,
But I shouldn't have to answer
To you!

You can call me a 'scrounger'
Take my self-esteem,
But I won't let you take
My dreams.

We die in thousands,
You lie through the press,
Cause fear and nightmares,
And kill us, with stress!

Go ahead, take our money
Rip lives apart,
But I've never given up
And I'm not about to start!

You think it's acceptable
To add to our pain
Kick us as we're down,
So we can't get up again.

Your words will wound
Leave scars,like a knife
But I am not nothing,
And you don't get my life!

Thursday, 17 December 2015

Dear Santa...

Dear Santa,

I have been a very naughty girl this year but it's all for a good cause, and I'm confessing in advance.

I've done my best to be nice - even to Tories (sometimes)! Surely that's worth a place on the 'nice' list! You have no idea how difficult that is...especially at the moment.

I've been quite restrained on Facebook, too! Not too much swearing,and I've managed to keep my 'inner bitch' fairly well in check. No (less than favourable) comments, about certain celebrities,either! - You will know, who I mean!

It is possible you might be under the impression that I drink too much wine, but I don't really - and anyway, I'm not the one who drinks all the alcohol left for me, (all around the world), during the course of one night, so, yeah,...pot, kettle!

 The real point of this letter though, is to say that I don't want anything for Christmas, other than a new government - one that cares about disabled people rather than hurts us, and destroys our lives.

I realise that it's very short notice, for you to arrange such a thing so I'll give you until...say...2020, (but much sooner, would be better) to sort that one out for me! We need all the help we can get, at the moment!

Maybe, in the meantime you could sprinkle some magic dust, in the direction of all those suffering at the hands of the government. Those hurt and made homeless by Bedroom Tax, left with next to nothing by unfair, (and heartless) benefit sanctions - masquerading as Welfare 'Reform'.

Help them try and hang on, just a little bit longer - and help me to do it too!

I will leave a 'no benefit sanctions', protest sign, next to your plate of mince pies, on Christmas Eve, - perhaps you could attach it to your sleigh, for me? You know what they say, 'Every Little Helps!'...Ahem,no, better not get started on that particular phrase, actually...!

Anyway, I know you're busy at this time of year, so I'll leave you to get on...

Travel safely,


Friday, 11 December 2015


I see her
For a few seconds here and there,
A face in a dream,
A moment in a mirror.

I see her dancing freely
To music only she could hear,
I watched her fall,
And face her fear.
I know her drunk as sober,
On clear mornings and hazy nights.

Maybe she was on a journey,
Through a garden, or doors
With locks and keys,
Finding hope in tiny boxes,
Or tripping amongst leaves.

She can be a clown
or caring friend
Wearing blankets or evening gown.
Lost in hotel corridors,
And never found again.

I watch her character grow,
She's caught between mind and paper,
Always waiting for me to take her,
Places I can't go.

I won't write her down yet,
She'll loiter for longer
In a library among dusty books,
Finding pens
with ink long dry,

And tomorrow she'll run through rain,
But only I'll know why...


Saturday, 5 December 2015

Another Day, Another Panic!

Had quite a nice day yesterday. Managed to switch my brain off, and relax. The pain was back down to 'normal' levels.
Was meant to go and see a friend with a disability issue, but she was in too much pain 'to form coherent sentences'! I can identify with that!
Actually, it's one of those situations when I'm not sure what the answer is for her - so all I can really do, is listen while she vents. I can do that until the cows come home!
As for the other friend, (the one in the homeless shelter, with her kids), she's doing OK, and on a housing list. I hate the fact that she didn't feel she could tell me, because she didn't want me to worry, but bless her for sparing me.
There's just so much going on that the media isn't reporting, no matter how much we try and draw attention to it, - but it's been that way for years now.
What with the (very convenient) distraction tactic of Corbyn's leadership, plus the Syria issue, we stand even less chance than normal.

I'm feeling a bit smug because all my Christmas shopping is done! Hubby helped me. I always feel a bit guilty for doing it on line, because I'd rather be helping the high streets, but I don't really have the mobility to do that any more, and certainly not the energy!

Had another anxiety attack this morning, albeit a small one. The DWP sent Christmas bonus notifications through the post, and of course, on seeing the brown envelope, my first thought was, 'it's my turn for the Work Compatibility Assessment'. I freaked, and started shaking! Couldn't even bring myself to pick it up, and had to get hubby to open it for me.

My heart was beating so fast and I just couldn't catch a breath. I felt all shivery inside.

The relief was unbelievable! I dread to think what extra stress does to my (already burnt out) adrenal glands, so I really try yo take everything in my stride, but it's not easy under this government. Things that were secure, now aren't.

Whether they accept it or not, - (they don't), what they're doing to us is a constant low level form of psychological torture, and it's happening in our own homes, where we should feel safest and at ease with ourselves.

My one consolation (or not, in a way), is the fact that I'm not going through this alone. So many disabled and ill people I know have gone through the exact same thing today .

We go through it every day, whenever the letterbox goes. That's no way for anyone to be living, never mind people who already have the struggle of illness and disability to deal with!

Hubby says 'You can't go on like this' - but it's not like we have a choice is it? We didn't ask for this government to make our lives hell through 'scrounger rhetoric', fear of assessments, and making us feel that we simply aren't worth it, but that's what we're living with!

My hands were still shaking when he handed me a cup of tea, so of course I spilt it! Luckily he knows better than to fill the mugs right to the top for that very reason, so it could've been worse!

The only thing I really want for Christmas, is for the government to stop putting us through all this! They are punishing us for being disabled - and it's not like we have any choice in that, either! Do they think I would've chosen Cerebral Palsy and constant pain, and limitations?!

I'd give anything in the world to feel safe, and wanted in society again. I'd like some self esteem and dignity back. It's not right that they can do this to us, and hardly anybody else seems to care!

The only thing I can really do is help raise awareness, and hope that people have a bit of compassion, and realise that what is being done to us is inhumane, and it could happen to anyone! 

Don't turn a blind eye to the suffering and thousands of deaths of disabled people simply because you think it doesn't impact on you. You never know when it just might...!


Tuesday, 24 November 2015

I Beg to Differ...! (Mini Rant)

Just saw something which said, 'Just because I'm a Tory, doesn't make me a Twat'.

Let's put it this way.

If you voted Tory, you voted for policies which have caused the death of thousands of disabled and ill people, the vilification, further suffering, and destitution of more.

You voted for a rise in homelessness, a million people now relying on foodbanks, policies which have destroyed (and not replaced), social housing.

You voted for cuts in vital services, and social security.

You voted for the lies and hate spread on a daily basis - and what's more, you likely believe they are the truth, and that things like this have to be done.

You voted for the privatisation of the NHS, and all these other policies which put money, -corporate and personal greed, ahead of people!

'Just because I'm a Tory, doesn't make me a Twat'...

I beg to differ!

Thursday, 19 November 2015

My Night...

It's 3am.
I'm lying awake listening to the wind. A dustbin (or something), just fell over. I'm glad hubby secured the garage door. The rain has warped the wood.
It seems I do all my 'best' worrying at night time, and even though I try very hard to sleep, insomnia is a lifelong thing, but it's worse now.

I used to like the nights. I loved the calmness and the feeling that the world is all mine. It used to be my most creative time, so I was never worried about not sleeping.
Now though, I'm either lying awake worrying about the future, -being without hubby, the Cerebral Palsy getting worse, or the WCA.
If I do sleep, I often have nightmares about the WCA itself -not even so much the outcome.
A recurring one is I'm sitting on a chair in the assessment room. It's very dark and there is a panel of people watching me, judging me. 

They ask leading questions, that seem innocent but they're not. They know it and so do I.
They shine coloured lights in my eyes, and keep asking me more and more questions -like a quick-fire quiz show - and I can't answer. It's too fast and I can't think!

Most of the nightmares are similar to this. In some they come to my home, and they are judging the things I have. They are invading my space, where I once felt safe.  There is suspicion - and an uneasy atmosphere which I can feel, even in sleep.

In the dream (whichever version it is), I feel panic. I want to  try and get away from the questions, judgement, - (and feeling like I'm not worth it), but in the darkness I can't find a door, - and I'm trapped!
They get closer and closer and questions get more and more personal, along with 'why should WE pay for YOU'?!  You're a drain on society'! It goes on...

I usually wake up shaky and sweating! Sometimes I've cried out. My muscles tense and spasm which increases my pain. I either can't get back to sleep, or I don't want to, in case I have another one. 

No one should be going through this on their own home - as a result of government policy.
The fear of assessment and the scrounger rhetoric, is a psychological war, which government have declared on vulnerable people who already suffer enough, and really don't need the extra stress!

Even writing this isn't easy. I share a lot of things about my life - but describing my nightmares seemed like a step too far, even for me.

I've decided to do it though because I want everyone to know what disabled and ill people are being put through - and by writing about it, I'm taking power back, and I want YOU to understand that I didn't ask for this! 

Disability and illness are not things I would choose. No one would. In an ideal world, I'd be well, disability free. I wouldn't be so tired. I'd have a career, and children. I'd be able to walk unaided and I'd feel no pain - but I don't have those options - especially not since what mobility I did have is rapidly deteriorating, due to the 'wear and tear' of life with Cerebral Palsy.

I'm in fear of the envelope that tells me my assessment is due, and I jump at the sound of the letterbox.
I've tried to raise awareness of disability all my life and I've tried my best to fight the injustice that goes with it. I just never thought I'd be fighting against our government, and feeling the 'scrounger rhetoric' dismantling my self esteem, bit by bit.

Depression is worse, anxiety is worse, and now my pain is too.

These are my nights - tonight, tomorrow night, and probably every night after that, until I feel safe and wanted by government.

Tuesday, 17 November 2015

Acceptance -A Message to Iain Duncan Smith!

I used to worry that I was boring, and that I don't have the type of life others do.

I haven't travelled much, or had children.

I won't pretend not having kids doesn't totally break my heart, but maybe I was never going to do 'normal'.

I've certainly never felt like I fit in anywhere.

I tend to see things differently to a lot of people, and notice things they don't seem to.

Maybe that's just what I have to do. 

I don't worry quite so much any more.

Some people think 'she doesn't do anything' - but they're comparing my life with theirs. 

They are usually able-bodied, have energy, and they tend to take those things for granted.  

For obvious  reasons, (my Cerebral Palsy), as well as some not so obvious reasons, (depression, anxiety, lack of confidence), my life doesn't work that way. 

It never will.

I like helping people, and I'm passionate about making a difference. I have been ever since I was a little girl. 

It's taken me a long time to get here, but I realise that's what I do. My role IS to help raise awareness of disability. It is essentially what I've been trying to do, all my life.

Before, I used to think that I had to be this, or that -living up to the expectations of society, my family, and myself, but I never thought I would have to do the same with government.

Government has demonised disabled people. 

They tell us that if we don't 'contribute' to society by having a job, being a superhuman athlete, or someone else's idea of an 'inspiration', then we are worthless 'scroungers', that are not worthy of support, or a place among worthy, 'hard-working people'.

Iain Duncan Smith said at the Tory Party Conference, that he wanted disabled people to 'work their way out of poverty'.

For many of us, that is simply not possible, no matter how much we want it! 

We have exhaustion, pain, and so many other limitations to cope with. His words (as well as the Welfare 'Reform' policies), have consistently belittled, alienated, and trivialised, what disabled and ill people face.

They have seemingly been designed to cause us as much pain and hardship as they possibly can, and they are. Not only are we losing independence, and vital support, but we are dying in our thousands!

Following his heartless words, I cried -again. It's not the first time, (and it won't be the last) that the brutal, compassionless policies of this government have reduced me to tears, or made me so angry that I don't know what to do with myself. 

The points I want to make to Mr Duncan Smith, this government, and to the people in society that believe the lies and 'scrounger' rhetoric, are as follows: 

Disability IS hard work! It is an endless struggle every day from which you never get a break, and it IS a JOB! A job which no one would chose!

Many disabled people do work or have worked and paid into the system. Those that haven't, (through no fault of their own), still PAY to live in society! We are human beings - even though this government is failing to treat us as such.

Even if we can't work, we contribute to society in other ways! It's not all about money. People learn from us, - we have other roles to play. 
To put it bluntly, maybe it's not me that has to accept my life, and what I am. Maybe it's Mr Duncan Smith, this government, and society. 

Sunday, 8 November 2015

The Disability Discrimination Act - Twenty Years Ago...

Twenty years ago, the Disability Discrimination Act passed through Parliament.

Although I didn't label it as such, (being so young at the time), I had already been campaigning and raising awareness, for six years.

Disabled people fought long and hard for the rights, and promises that were contained in that document.

Now, twenty years on, many of the rights covered in the original DDA, and the act that replaced it, (The Equality Act, 2010), are being abused by our own government.

We are no longer able to be free from harassment, or Hate Crime. The government itself (DWP), inflict both of those on us, every day!

We are frightened of the assessment we face, in order to keep vital support.

I for one, have nightmares, my anxiety and depression has worsened. The constant tension has aggravated my pain levels, so my Cerebral Palsy has become harder to manage.

The government practices hate crime, every time they utter 'scrounger rhetoric' or feed outright lies, and misleading statistics to the media.

In turn society now think it's OK to judge us, and abuse us too.

We used to fight for access to buildings, access to jobs, leisure activities - and so much more besides.

The DDA meant that we were given those rights - although, from personal experience, that fight is ongoing, even though the Equality Act covers those things too, it's been a struggle to enforce it, but without the DDA, I don't think the Equality Act would have even been possible.

Apart from that, we know have a much more important fight on our hands, - one I never thought I would see, after so many steps forward in the time I've been campaigning.

Now,we fight for our LIVES!

As a result of Welfare Reform policies, disabled and ill people have died in thousands, after being 'Fit for Work' by companies employed (and paid), by the government to cut the Social Security Bill, no matter what the cost, in lives

According to the latest DWP statistics, between December 2011 and February 2014, 4,010 disabled and ill people died after being found 'Fit for Work'. That is in those years alone.

It obviously doesn't take into account the deaths before, or since - and I highly doubt I am the only one who thinks they are inaccurate. There have been thousands more!

It's not just those statistics that matter. It's the cost in quality of life. Self esteem ruined by being told we are 'scroungers' and reminded frequently that 'hard working people' pay for us. (Disability is hard work! It's agony. It's frustrating. It's limiting, -It's a job no one would choose)!

Anxiety about when our assessment appointment will drop on the doormat. Stress exacerbates many conditions - and that has likely hastened or contributed to those deaths

Disabled people who can't afford to eat, heat their homes, or get to appointments, because they have been cruelly sanctioned and lost their only source of income.

Those who have lost their cars, because they failed to qualify for Personal Independence Payment, (which has replaced Disability Living Allowance). They have lost their freedom, and have some have had to give up jobs.

The closure of the Independent Living Fund has meant that some of the most severely disabled people no longer have their independence that meant so much. In a lot of cases the money from the Independent Living Fund was not ring-fenced by councils, and as a result, has been spent elsewhere.  

The Disability Discrimination Act was a huge step forward, and a cause for celebration, and relief. People were so happy, but now we have to fight even harder - and we'll have to fight long after this government is (finally) gone, to get back all the things they have taken from us.

It's going to be a long road, and we need all the support we can get.

Wednesday, 28 October 2015

Fireworks - A Plea!

I have Cerebral Palsy.
Every time a firework goes off, so does my 'startle reflex'. I involuntarily jump, and my muscles go into spasm. 

I'm not a 'Killjoy'. I'm not asking for a ban. All I'm asking for is a bit of consideration, because the spasms add to the pain I'm already in.

 Please, (for me, and other animals, everywhere), keep them to November 5th! 

I can't tell you how much I'd appreciate it.
Thank you.

Helen. xx


Saturday, 26 September 2015

Don't Judge Me, I Didn't Choose to be Disabled

I am looking out of the dining room window. Autumn sunshine is bathing the back lawn, and reaching to touch everything it possibly can. It gently caresses the browning leaves on the trees, making them glint slightly. They move as if responding to a lover's touch, as the breeze passes through them.

Then before I know it, the sun disappears behind a cloud leaving everything dull and colourless. It seems like all life has been suddenly extinguished. I envy the sun. It must be nice to hide like that, letting the clouds shield and protect you, until you feel ready to shine again.

I wish I were the clouds themselves, constantly floating, always in motion, and able to escape from everything that could hold them there. I want to run away. It would be lovely to be free of my broken body, just for a moment, a single blissful moment, when I would shine.
The Cerebral Palsy would cease to be and the pain that goes with it would vanish, like a whisper does, into thin air.
I dream of a time when I am equal. It would be so amazing to be free of it. I want to be accepted, just as the changes in the seasons are.

Underneath this damaged shell, there is a human being just like you. Tears fall from my eyes when I cry and if you cut me, I will bleed. Last time I checked, my heart was still beating, although, I admit there are days when I wish it wasn't.

What I hate more than anything is that I am unable to work. You see, sometimes the exhaustion is just too much. My body will not do what I ask it to, and the pain can be excruciating.
It is a ripping, tearing, gnawing sensation. There are so many days when it is sharp and relentless. I want to scream out in shear frustration, because I didn't ask for this.

I wish I was strong enough to have a job, to meet people, and say "Good morning. What needs doing today?" I did for a year, but I was exhausted and in so much pain at the end of everyday. I was heartbroken, but relieved when my contract wasn’t renewed. 
I'd love a salary again and to be able to feel like I have accomplished something at the end of the day, but I know I’m not well enough.

I don't want to live on benefits, and I can't stand the look in some people's eyes when I tell them I don't work. It is a nasty mixture of pity, and evident disdain.

I want to scream that it's not my fault. I want to tell them that tomorrow I may be in so much pain and so tired that I will find it impossible to get out of bed. I would tell them that last night the pain from my various conditions was so bad that I had to throw up in a bucket, while my husband held my hair. Can they not tell from the bags around my eyes, that I rarely sleep more than three hours a night because my hips won't let me get comfortable.

Now, on top of everything else I deal with, I'm facing losing my Disability Living Allowance. The sun goes behind the cloud again, and my heart begins to beat faster. I can say goodbye to the precious little independence I have. I won't be able to afford taxis to visit friends anymore, or a mobile phone to keep me safe when I do manage to go out, and oh yes, I won't be able to keep my wheelchair in good condition either.

These things may seem like luxuries but they are not. They are essential. I am unable to manage buses alone, and my husband would have to come with me everywhere if taxis weren't an option. Bye, bye girl talk, bye, bye, independence and bye, bye any self esteem I have left.  

The pain kicks in again as I watch him make my lunch. Before I know it there are tears in my eyes. Why am I such a burden? That's how I feel...a burden. I wish more than anything I could help him more, but it's so difficult when you can't stand unaided, never mind walk.  

I'd love to be able to stand in the kitchen and cook a meal, or even make a cup of tea without pain. At the moment, at least I know I can contribute to the household bills. I smile at that. It makes me feel ‘real.  Most people hate getting bills! I've come to love it – the ones I can pay. They drop through the letter box addressed to ‘Mrs Helen Sims' – I am an adult, a wife...There is a deep pain in my heart when I think once again that my disability means I can never be a mother. He hands me a bill, understanding how important it is for me to open them. WE have a household to run...even if it's only a household of two.

Thank you for listening to me waffle! It means a lot to be heard.  I hope that one day society will change its values. They will see people, their struggles and their smiles rather than how much they earn and what car they drive.

It is soul destroying to be in a world where that counts for hardly anything at all. The truth is that I feel increasingly worthless, and I wish I could be burnt away, like clouds are on summer days.

I am not saying for one moment that I am suicidal. I am not. Compared with others, I am so lucky.

My husband and I love each other so much, and everyday he makes me feel like I am the most special person alive. He says it is a privilege to be able to hold me when I cry, and to listen to me when I am frustrated and angry with myself.
He sees the real me, a woman, and his best friend. In these uncertain times, I can only hope that people's worth will be measured in other, truer ways, and there will be more people like him. It would make our lives so much easier.

Image: Google

Friday, 25 September 2015

Trouble in Paradise. (Poem)

Trouble in paradise,
Slow falling rocks.

Rivers run dry,
No more feeling,
What's the point
In believing?

Trees stark naked,
Cold and exposed,
Like the emotions on our faces,
For the world to see.

Trouble in paradise,
Bereft of warmth and comfort,
No more colour or caring,
It leaves a barren land.

Image: Pinterest


Monday, 21 September 2015

Music of the Night... (Poem)

She stands
In fading light,
Waiting for the peace of darkness
To wrap her in his arms.

The stars twinkle
Like glitter,
Her tiny specks of hope
In a blackening sky.

The breeze is gentle,
As he strokes her face.
The only sound is leaves,

Darkness brings her safety,
Warmth of his cloak.
The breeze,
With its dying breath,
Softly invites her in.

All is suddenly still,
Too her pounding heart,
Brings her comfort,
And speaks of mystery.

She smiles
And wipes her tears,
The day,
A world away.


Wednesday, 16 September 2015

It Can Happen to Anyone!

People close to me will know that a friend had a stroke at the end of November.

Luckily it was quite mild, (she was treated quickly), but she's had to drop her full-time job to part-time hours because she's still recovering, and getting very tired.

When I saw her last night, she told me she feels her employers are working to have her 'medically retired', and that she is a 'problem' that they are trying to 'tidy away'.

She's worked for her employer for many years. Naturally she doesn't want to lose her job, but it seems everyone she has been sent to, (in order to decide 'what happens next)',is somehow connected with said employer.

Last night, (while quietly talking to me), she was nearly in tears. She seemed pale, and more fragile than I have ever seen her.

She doesn't  yet know if the 'pay off' will be enough for her to manage on, and is feeling that she doesn't really matter anymore, anyway. 

Somehow a hug from me didn't seem like enough.

No one should be made to feel like she does, and she really doesn't need the worry of all this, on top of everything else she is going through.

The reason I'm writing this, is that she is proof that sickness and disability can happen to anyone at any time! It isn't a choice.

Please don't ever assume that it won't happen to you, or that you won't need help and support.
Her life changed forever, in a couple of minutes or less. So could yours!

Image: Google.


Tuesday, 15 September 2015

The Hut on the Moor...

It was so quiet
The old Sheppard’s hut on the moor,
Always in darkness
With dust on the floor.

A rusted kettle,
A blanketed bed,
Even in winter,
A home for Fred.

There was a small fire
On which he could bake,
But on stormy nights,
 The roof would shake!

He meant to fix holes
Through which came the rain,
But he couldn’t climb the ladder,
For too much pain.

Once he’d had a job
And he’d painted the walls,
Now they were rotting
And soon they would fall.

Don’t think Fred is lonely,
He has his sheep,
At nightfall their noises,
Will lull him to sleep.

In summer the sun shines
Through broken windows,
And where Fred will wander,
Nobody knows!

But he’ll always come back,
For it is nature he loves,
The changing of the seasons,
And the wide skies above.