Monday, April 16, 2018

When Quality of Life reaches the lowest 20% of population

Suffering isn't enjoyable.
Suffering is exactly what it says on the tin.
the story of lives played out in spectacle never expected
Torture too is abhorred the world over in all its guises.
Any fight worth the fight damages you
when you are very unwell.
Remember there are many faces to that  Torture.
it can be at the worst end of tragic and cruel wars, to the lowly silent killers of domestic abuse.
It can be anywhere in the middle.
It can be from the State and from the Public Services.

Countries can have a 'reputation' or 'suspicion' of being unsavoury, unpleasant, and undemocratic in its attitude to its own.

Countries can have a reputation for being a great 'crack,'  a 'fun loving nation' a country can be the best place to live, and yet lurking in the recess is the cesspit of abuse and torture.

Gift wrapping away issues of abuse and torture is held in the best hands at the commercial counters of 'sell us well' stores.
Gift wrapping is an Art form in some countries, especially if it is needy of world attention and affection due to size, economic wobbliness and poor management.

All these reasons, do not make torture in any shape or form, excusable.

I do not accept it in any form whatsoever.

WHEN IT HITS TO YOUR DOORSTEP AND THAT OF YOUR LOVED ONE, YOU WILL RISE UP AND DEFEND THIS INDEFENSIBLE ATTACK, which i now am trying to do and have done for a solid ten years of grim endurance.

I am tired, bone tired of fighting systems of abuse,systems of anihilation and systems who actually believe far more in defending the indefensible than in those they were constituted to uphold and honour.

I am tired of our healthcare system, our denegration of the citizen to the lowest of the low.
I am fighting weary of the suffering across Ireland,  for the elderly, the young, the very sick the disabled.
it was not a 'good life' but it was MY LIFE,
all i was given.
I am tired and angered that the people we elect do this to us and hold themselves up to be some wonderful species facing the modern world with modernity.

"we are a modern country"  states Enda Kenny in his office of An Taoiseach, with indignant stance against the Roman Catholic Church not so long ago in history.

Say that to the trolley watchers, the nurses, the patients and the ones that have laid on hard rock trolleys for 40hrs at the age of 80 and more.

When abuse hits home I guess that is where it hurts the most.
It has been a grim decade and we are in decline.
not for the first time booted out of A'E and ending in another hospital very sick
My twin returned to Ireland after an incredibly valuable career and contribution second to none towards the less able.  she gave to women who were victims of clerical sexual abuse, but she earned her crust showing a better way to treat children with disability and protecting them from abusive practises in care management systems.
you never get use to Irish healthcare systems
Nothing prepared herself nor I, given our decline through severe illness and disability for what was metted out to us for the past ten years.
we all felt betrayed with the denial of our rights under the Optional Protocol which the government of the Day rejected when ratifying the UN convention on the rights of those with disabilities.

'taking this on'
was not by choice
Driving wedges into our quality of life with reports now claiming we suffer severe PTSD and the reports also claim our quality of life rests at the bottom sector of society within the mass of 20% who has the worst quality of life within the citizen base.
 recent images
says it all
This was caused and there was purposeful intent to smash our resistance to the mite of the HSE, an institution of huge proportions within this state.

The HSE, the mechanisms of the HSE are recognised within the world of the sick, the disabled, the poor and the needy as being a very harsh and cruel force against the people who are vulnerable and needy.

The way it operates is understood by all, it may be a secret underground, undercurrent, but it is well understood.

it is morally and ethically wrong to be cruel and uncaring if your role is in the caring professions.

it is a bankrupcy worse than the financial sort.
its soul bankrupcy.  It kills body and soul. It kills to torture sick and elderly in this manner, hoping that if you keep it up long enough the sick will turn away and not bother to ask for more.

Or ask for rights based care and consideration.
Those who fight for their lives are literally fighting for that quality of life which left them, spirited by pain and suffering and abuse, spirited away from all they had once known that brought joy of being alive.

We face a desperate end of anihilation by this state.
We have fought a battle for ten years now.

Most across the globe recognise this, and stand by us, many may do so in the silent manner of the Irish.   We are not a very demonstrative nation when it comes to healthcare, at all.
Yet recognition is there and we are grateful we know it is.

I want to see closure from this situation. We have lost a decade of living and our lives put have been put on hold.
We have lost the ability to sense the joy in the juice of love and life.
We have lost the ability to look past this ghastly suffering as it still continues.

We want our lives back in total.

Today this is more about pleading, a pleading that sense will prevail.

It does no one any real favours defending the indefensible here.
The closure is for all.
Movement into a more positive vein is a worthwhile road to take.
Movement away from such intense involvement in our lives is worthwhile.   All involvement requires committment of time,money and paper trails.
No one likes to be hated to the core, as we do, due to injustice set upon us and our being, our character and our lives.
learning is the way forward.  when wheelchairs were seen to be a problem, Margaret did a post graduate course in 'wheelchair & postural seating' course with Limerick University.
Learning is a way to tackle issues more than procrastination
No one wants to sit in the office and know they have to tackle the same tedious odious job of sorting out for another day the procrastination game demanded of them, wearing them down and giving no job satisfaction.
No one wants to be an abuser.
But they are, and there are too many out there.  They get paid for that!

What better way for closure in an Irish psyche is a handshake with a smile?

Both parties divide, walk away from the table 'a peace process' in train, a sorting of a veritable mess achieved.

Back at the office the hands can be clasped to the gods above, "thank god that is done"
and we can go home and hug each other and say, "let our life begin twino."

Please pray with us that tomorrow that this is the last sort of,  trench warfare battle scene, where there are two victorious sides.
'Them and us.'
It would be a good feeling and a good day and a great outcome.

Remember the world does watch Ireland, we may be small and seem inconsequential, but i know the world watches this.
many are too terrified to go 'public' on state abuse.  the suffering is huge, fallout massive and there are consequences for action taken, it takes its toll.
The reputation in our healthcare services has reached far and wide by now.
Many are spreading their pain worldwide,  not only the twins.
Many say it as it is, and the face of the inhumane treatment is heard.
Ireland does work silently in these veins of communication.

Its not the enviable situation to be in to hear another country claim us as 'third world' in healthcare approach.
Far too often this is being said, to many not to a few.
London underground
on the way to meet a neuromuscular specialist.
we look great!
we feel absolutely awful!
Looks mean everything in an country that doesn't fully understand complex diseases.
Let us begin the beginning of an end to this.
Tomorrow we sit around the table,two 65yr olds going on 30yrs, who want life over the bed pan.
Sick yes, but needing our life.

Tomorrow we sit and hope that sense will prevail.
Tomorrow we hope that the cruelty will end for us, we have endured enough.
Margaret waiting to give an impassioned talk to the Transport committe at Dail Eireann
Age Action, Friends of the Elderly, People before Profit, Simon Harris TD Minister for Health, Finian McGrath TD  Minister with special responsiblity for Disability, Deirdre Clune MEP,  Roisin Shorthall TD,  Gino, John Brady, Caoimhghin O'Caolin TD, Thomas Pringle, Pat Casey TD, Independent Living foundation, AT Networks, Centre for Independent living, Neurological Alliance of Ireland, IPPOSI and far more have heard our story.

Many international organisations of note heard our story - Amnesty International, International Mito Patients, Researchers, clinicians, Patient Focus, Advocacy groups, Disability advocacy groups, and charities.
CEO's of large organisations have been appalled at our plight, and stated such.
saying it as it is, is never 'Pretty'
So too has RTE, Joe Duffy, Joe Little, Primetime, Newstalk, East Coast Radio, the Irish Examiner, the Irish Independent, the Irish Times, Twitter and Blogs,  all carried features, video clips,  news snippets and paper spreads on this case.
we may have angered the HSE
we are very damaged by this system
Tomorrow 17th April 2018 is the day the war ends - or will it?

I would welcome a strong force of support in any guise it is to be activated, people power works, but it strengthens our resolve and should galvanise those to realise a Fight worth fighting is the Fight worth that fight.

Please be on our side tomorrow, in any way you chose, demonstrate the committment we have felt and seen for a full decade of our pain.  We have been in chronic pain during this journey.