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!

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,

Helen

Lucy

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...

‪

‬

#helenswriting

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...!

#helenswriting

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!

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.

      

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.