Sundays blues

I do not know what you normal person’s do on your Sunday but here an brief description of my usual Sunday. Wake up at six am pain running through my body soaked with sweat where the pain had gripped me in my sleep to the point it wakes me up this time.

I roll over to my bed side cabinet praying i remembered to put pain killers there and they not empty. Yes there their at last I know can get a light relief from the pain. I call out for help waking my son knowing how unfair it is but what choice have I I know without his help I am trapped there and helpless. Image forty five and helpless. It only seems like yesterday I was backpacking across the alp or watching the sun rise in different desserts and now I cant even get out of bed on my own each day.

It seems so unfair that after all I done in my life i am now sentenced to this. Watching my own body be my prison and wither and fade on me. Trapping who i am inside. Each day I wonder how much more I will lose will my hands arms even neck join the fight against me will I eventually be only a brain in a shell.

My son get my outfit ready then help me till i am washed and dressed then theirs the dreaded stairs to face. It was only yesterday that I laid at the bottom of them unconscious for three hours. I decided to take them alone and as no one was here to watch me the worse decided to happen. How can I have anyone here the system took away the way I got support and as yet its still to return.

i look at the scars on my hands from other accidents over the last year all this because of that person who for a job lied and left me and those I care about to suffer. I know I should not but I so wish one day that person is the same as me and get treated as she treats us.

Slowly he guides me down stair watches my every jerky movement ready to step in like he was watching a child take his first step[ fifteen minutes to walk down one flight of stairs. Perspiration running down my face every step like fire running through my body.  Its times like this I am thankful for my wheel chair so at least in that I am safe and pain is bearable.

Some look at a wheel chair and see disability and hard ship  to be honest when i look at one I see hope and freedom. My wheel chair is not an adversity it is a godsend and frees me from this curse of these four walls.

Today sons at work and I am alone apart from my pups my drinks on the table and the remote and my keyboard accessible. I know apart from these words on this screen I am alone and the world moves on and i am trapped in this prison. My chair sat there unable to move it to leave the house so here i must stay till some kind soul grants me the freedom to go out side and feel the wind and air.

When your out shopping having dinner out with friends down the pub think of us few who what you take as daily tasks to us they are a luxury and you daily takes to us are a gift that we some days will only dream off.

Now I will go watch the cloak and write my new story and let the day fade away hoping tomorrow that I will once more get to face the world. Maybe it will happen maybe it wont but then I know in a few weeks my daily work begins again and I know each morning the freedom and pleasure of work will be here again.

Work to me isn’t work its freedom and feeling normal now the money means nothing but the feeling of being useful and needed that is what work is and I thank those who give me that chance with my every waking breath.

Thous of you who hate work just think what it would be like if you were like me and the others like me and then think of what it would mean without your work. Then ask your self if your work really that bad.

Have agood day and hopefully the next blog will be more of a merrier note.

 

Another painful day

Friday morning been awake for hours yet again. As has become the norm now I wake racked with pain I know its something I have to learn to live with but I hate it so much. I take my painkillers and the rest of the pile of pills I have to take just to live in this torment for a bit longer.

I visited my brothers grave this week as well sat there by the stone thinking soon this will be my eternal rest to. Funny thing is the thought no longer worries or scares me. He died at eighteen a terrific motor cycle accident that pushed his skull into his brain. Since this all began the seizures the head aches the voice buried deep in the back of my mind . Then the pain I endure every waking moment I have asked myself many times over the years is this all worth it.

Am I staying around for me or is it as I think is the case for those that i’d leave behind. Defiantly not staying around for my parents or brothers and sisters to be honest the only reason I have to put up with this suffering is for my children and grand children.

This year the system has stolen what self respect I had left me thousands in debt and caused me to fight like never before. The personal independent system has no heart to those like you and me. What kicked me worse is when I was told if I was a drunk or an addict I would been entitled and would gone through without this fight. Is it truly fair that those that choose to inflict things on them selves get rewarded yet those of us who only fault is that we have had this burden of disability forced on us are left to suffer like third class in society.

I have to ask myself are we the escape goat’s for the powers at be because we seen as the ones who will fight back the least. Well I got news for those who think that, its our time coming and we will no longer stay in the shadows and accept the injustice that is cast upon us. There comes a point in all society’s that the downcast has enough. Until now we accepted everything but now the revolution starts and we take our place and fight to gain what was stolen from us.

They once locked us in asylums castrated sterilised us, so we couldn’t bear children and through out history we have been punished for something that was not our fault. Now they promised care in the community and everything, but if you open your ears and eyes to there true words they want to use us as a way to recover money once squandered. They get paid so much and waist so much yet we are the ones who must suffer for this. I say no more let them use part of there wealth gained through others suffering and let us live like we deserve.

LET THEM ALL KNOW WE HAVE A VOICE AND WILL USE IT.

Time to give back

I was one of the lucky ones I wasn’t born disabled and had a long life before it crept up on me through a mugging then joint degeneration I have been left as I am now a disabled person.

Through my time as a disabled person I have faced so many adversity the governmental system. Then the able body persons who try not to see me or admit I now exist even friends or so called friends I known all my life dispersed or forgot I exist.

 

me

This is me as I am now or

jas

We are human we have feelings and we do feel the pain of rejection or adversity.

I have now decided its time to help others like me and work on giving back to the world.

https://www.kickstarter.com/projects/insanitybooks/insanity-books-lilith

Using this project I will be trying to set up a diversity group to aid other disabled writers, students and those in academia. Its time that we were seen as equals and no longer as the third class in society.

We have a voice and its now time to be heard….  

Night’s of Torment

Its 4.45 am and I am wide awake, I did sleep but then from my gentle slumber it came the agonising pain shooting through my body the cold sweet and beads running down my face. Then as I move my leg for the first time after waking, The crack from the joints echo round the room.

I bite my lip and suppress the tears from the agony waking causes me to endure. Then as I move the crack comes from my back and more pain shoots through me like a thousand red hot needles inserting them selves in my lower body. Please I beg silently to someone who is not there let it stop but in reality it will not.

Every morning I wake praying this will be a good day but do good days ever come now or is this the eternity I now have to face. the chair is my warden and my prison as I know it is the only way I can cope with the pain is to be sat there at the worlds mercy and prey that one day it will all end and the pain will finally fade.

I love life and my family but each morning I think one day the bliss of eternal sleep will finally be coming my way. I have taken my pain killers and wait for them to ease my tormentors grip.

To all of you who think life so bad just look at the chair that is our prisons and then ask your self is things that bad for you and then look at us.

To us a day with minor pain is a excellent day and do we say out loud no we keep it inside for us to know and the world at large can rest easy thinking all is well.

Third Class because disabled

In a day and age where the world should have advanced we are sadly lacking. Most disabled persons I know hold down jobs and do everything to pay there own way as much as they can.  Sure because of the added expense we do need pip but then over the years most of us had payed in before we became disabled or our families have.

But to my point of todays blog, I was out shopping today and I noticed how two kids were pointing at me. There parents saw them pointing looked at me then quickly pulled the kids away. Am I am I deformed or a monster no. Yet that man and women avoided eye contact and couldn’t of moved away faster.  Maybe they would been happier if it was the good old days where family’s hid the disabled or they were locked away in hospitals or asylums.

I as well as others tried to serve my country I worked hard all my life. Yet we have comments from abled body persons thinking we don’t hear like dole plungers, social security burden or best one is scrounger. I as so many others unlike a lot of able body persons like to work. I work in an education establishment and am a writer and published author.

Yet to the government system I and many others have had to fight for the little help we deserve. We get made to feel like cheats liars. Personal independent allowance is an uphill battle first we have to attend atop for an assessment where others as well as my self find that they do incorrect evaluations which the dap use to assessed your claim.

Do they care about the financial hardship caused as they politely put not there problem. you lose working tax rent community charge benefit free prescriptions. Your bus pass goes and if scooters on finance or on mobility scheme you lose the to. Not wonder suicides has happened by some disabled during this process.

November 2016 it all started were in July 2017 and finally had my tribunal which I was pleasantly surprised hoe polite and caring the judge doctor and disabled person was they  listened read the evidence and judged fairly. Unlike atom they listened. Atos did my assessment December I sent the travel claim in twice since yet to hear complained about the untruths in there reports and guess what no records of the complaint.

So to cut the story short the system is now geared not to help us disabled but instead to reduced claims by 500,000 leaving the disabled in some situations where they can have there lives devastated and not worrying about the effects on disability or health the government seems to have decided to recover there losses from those who find it hardest to fight back.

I SAY ENOUGH IS ENOUGH its time we told the powers that us disabled have a voice and we will no longer be walked over. Its time we the disabled got the compassionate and caring attitude that in public the powers at be promises instead of as it is at the moment the knife in the back we all have been getting.