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.

Friday, February 23, 2018

My biodegradable brain - definitive diagnosis!

Achievement gave me a new way of dealing with disease and it meant ‘escape routes.’
chucked with no neurological care after being to centres of excellence abroad as a rare diseases patient - Ireland has reframed me as not worthy of either diagnosis, care, treatment - basically sent home to die

fighting a medical model of tyranny of the person is a tough road, my aim is to meet the beauty at its end

These escape routes were to be come increasingly valuable as I stumbled along a healthcare system which seemed designed to test both my endurance, capacity to fight and capacity to remain calm.

My ability to stay calm is not one of my enduring features.
Calmness is a pre-requisite for my wellbeing, noted as being an essential ingredient in any way I chose to live.  I needed this calm.

I now was in new territory becoming increasingly alarmed.
I was in this territory alone, with no supports to counter face this.
I had transitioned once more from normality to completely abnormal ways forced upon me in an abnormal fashion because I was catapulted into a system of powerful consultants and I was not going to be able to manage any of this.

I left the consultant who labeled me as ‘wanting Parkinson’s Disease’.
I did the right thing, no one would stay with such a slur or abuse of language or insinuation to a person who is honorable and kind and could not cope with such spiteful remarks.

Walking away I felt I would get the right consultant next time.
I chose another hospital.  I chose to trust again.
My first visit was made with the support of my identical twin sister.
Oddly, the consultant was more enthusiastic about requesting some paintings from me for his bare walls once he heard my ‘occupation.’
Alas, he didn’t suffer Abstract Art well, so it looked like he was not going to get anything even if offered.  I do not do pretty landscapes.
He was a disappointed man.
Soon after another visit was made and a test requested by this consultant’s registrar for Huntingtons Chorea was put to me.
This condition would be my death sentence, if positive. 
You  gradually develop towards dementia and full incapacity.
I consented to be tested.
Learning years later having this test you must be in counseling and be genetically counseled in order to prepare for the outcomes of this because of its very poor prognosis.
I wasn’t.
I waited and nothing was forthcoming.

I continually rang the nurse, continually rang the department but nothing further was mentioned of this test once the blood had been drawn.
I was sent to the psychiatrist within the hospital.

These notes are embedded in this hospital file and are shocking as some kind of construct was woven around the organic process of a slowly forming atrophy/dementia type condition.
Given this was in 2009 and I still remain with full capacity, the slowly forming progressive brain disease never happened.  We are in 2018.

Further inquiry through FOI in 2018 found that a recent visit to this hospital and another consultant saw him extract the psychiatric reporting of that time, 2009 and pin it all on the blood results he had performed in 2016. 

He advised me to go home and enjoy what was left of my life.
I have to ask many questions here as my brain goes into a spin of intrigue and confusion (not from dementia I hasten to add)!

A signature was being given to my case.  I was being framed.
This isn’t TV entertainment.  This is Irish medicine at its worst.
It certainly, to me, sounded alarm bells within and fully confirmed my suspicion of their intent against me a very sick individual.

Any way you look at neurology here and my case you see a construct forming.

Within the space of two years at this hospital no tests were ever done to determine why I had a movement disorder, muscle wasting and a mixed connective tissue disease.  

There appeared no interest and no further investigations were ever done.  We did have of course the psychiatric consultants ‘stitch’ me to the tapestry with lack of personal consent by this patient to be labeled the way she has been which is untrue.

In brilliant academic language I was in their words just a woman with a progressive organic type of brain degeneration and a personality reflecting this organic degeneration.
The book was effectively closed by consultant psychiatrists.’  

No further inquiry made on Neurology.  It did not matter that one of these professionals I never got to meet!
Whatever happened the blood tests for Huntington’s Chorea you may ask?
There is considerable complexity in my personal understanding of this.
It was never done.
It is and remains as simple as that.

It was sent to the The Genetics Department of a major hospital.  It was found to have incorrect labelling and this was claimed by the hospital as ‘human error.’

We can all fully accept human error.

I cannot accept what happened next.
 Genetics were informed that I had been discharged, the bloods were taken by a different team and they had no idea where the doctor was who took the bloods. (2007)

This is not true.

I remained under the care of the same neurology team at this hospital for a further two years and was then discharged.

I threw what is eupanistically called ‘a wobbler.’

In the presence of a supporter who came with me to try and extract the test results from this team, I was not being told and I lost the preverbial plot.

I was discharged due to the atrocious abusive manner in which I dealt with the staff on that day.

Looking back I see this an entirely different way.  To struggle for two years in effective communication through the normalized channels of contacting by phone and engaging in the clinic on ‘where is the genetic test results?’ for Huntington’s chorea’ being met with a file never opened is testament to how I tried to engage.

If as above, the files contained the psychiatric reports of confirmation that I was going through an organic brain, progressive disease leading to a demented state then no file would be opened thereafter.  

Of this condition, i wasn't informed of either, which is odd because i was the patient.  Who is this very disease discription actually for, if not for the patient herself?

But witness to the fact recently with a mighty chuckle to all of this my GP tried to contain herself from laughing. 

“You have not got dementia!’  (ten years later)!
“No,” I laugh back “I do not”

Within a year my dear mother on developing dementia, was feeding teddy bears.

I continue to feed myself, my sister, creatively.
I feed my van petrol and I can drive to Athlone and further and can manage money (what’s left of it).
The astonishing findings on this file, is enough to rocket any sane individual into a seething mass of fury, but alas although I see it now and it can all be discounted – we live in Ireland.

A consultant running through these very inaccurate files, extracting physically data dating from 2009, (out of date data) and pinning it to the collar of his recent blood reports is shocking in extreme, occurring in 2016 and I have received no further help from him or his team.

The suggestion to go home and ‘enjoy what is left to me.’ Seems now  ‘staple medication’ and cheap.
Its cheap to scapegoat patients who are considered very rare and complex in this manner.

Labelling is never good, but this is at the extreme end of utterly atrocious.
Extremes exist and difference does exists.
When differences of opinion and fabrication occurs the patient must stand up and call it, name it as it is.
We have here a case of “the emperor is wearing no clothes.”
This well known fable from a different time and era attests to the fact that Asperger Syndrome was alive and well in that kingdom too.

Bluntly put this little child of observation squarely claimed a case of fabrication, denuding of a patient to a state of vulnerability and wrongful diagnosis is medical negligence, a crime against the hypocratic oath and a denial of duty of care.
So says this lady delving into the intriguing world of semantics, power, and uncredible diagnostics spheres of Irish consultant disciplines.

Two or three major medical trips abroad to centres of excellence tell a very different story and in a very different way with a very different emphasis on the physical decline alone.  Nothing further needs to be looked at.
London 2016 - visit to see consultants inform us they consider we have a muscle wasting disease and more tests need to be done - to date they have not - they, instead (in Ireland) both have a different way to care for us than that of the UK, it is called 'go home and die.'
When an eminent CEO tells me or inquires of me

 “do you realize that the Irish Consultants have a different view on how to care for you than the UK consultants.”  

I instantly say back, I am fully aware of the Irish ‘take’ on all of this.
“go home and die.” is their wish of myself and my twin sister.

It takes into account no consideration of eminent consultants at the cutting end of ground breaking science and research and at the forefront of managing disease complexities, to that of an Irish setting where consultants are struggling to keep up with its clients on a basis of even managing at all, anything in fact.

When a patient receives a neurology appointment in 2016 for 2024 as a first appointment you begin to see where ‘flushing out’ such patients as my twin and I as a viable way of getting patients lost from the system easily to cather for ‘the real ones.’

The UK see it all differently.
We are the REAL ones.

They may have over 58 million citizens to deal with, but with limited means and time they dealt with us in an exemplary fashion. Detailing our case as vary rare and complex cuts no ice whatsoever once you return to Irish soil.

They instantly revert to the lunacy of us and our case and I call it lunacy of Irish medicine to discount a far superior view and place us in a nomads land of complete and utter ‘entrapment.’

We have a power base willing and able to imprison us in such a way that we are powerless to effect meaningful change in any shape or form.

The construct has been established, I am a person biodegrading like washing power into nothing therefore go home and die.

This isn’t the case of solidness and soundness of mind, belief, my wishes and that of superior medical resources.
The different way of treating us and caring for us is not our wish.
We have not agreed to be sent home to die and be left to die.

This is the meaning of power.
It is degrading to label a patient forever in a vice of misuse of both disciplines and expertise.
Uk determined many things and discounted a lot including issues around my frontal lobe atrophy. This being the brain problem that got rocketed into a mass of washing up powder, by the shrinks here.

When considering this brain atrophy it is minimal they claim.
It has caused no pathogenic effect and I am not suffering dementia or nowhere near it.

I have not got a pathogenic type organic progressive brain issue and the atrophy most likely was there since birth and is not going away but likely not going to get worse, beside its not that BAD!
Its only minimally worse than normal and it has not changed over decades.

We still cannot put to bed the theory of the washing up biodegradable brain matter.

We cannot bring back a fact the brain is not going jelly like and I am still sick from a disease no one here is bothering to investigate.

is this an image of a demented woman (2017) absorbing the essence of the scenery and taking professional photographic shots? when Ireland refuses to treat me, they allow me intellectually know degrading in body without even knowing why is a breach of my fundamental rights to both a diagnosis and to care in the European context of holistic medical input -since 2015 i have had NO medical care. Those who use wheelchairs can rise out of them, 80% can walk, i have a very strange disease type, i can walk for short periods, but mostly outdoors i am in a wheelchair.  (you constantly have to explain)
It is keeping twins trapped alone against our wishes with powerful men, usually men, claiming that is all that should happen.

We say its not all that should happen.

I claim its gross negligence and it is prejudicial against us.

Friday, February 16, 2018

it has been obscene and torturous ten years

i was about to lose my county, my financial stability, my everything.
'Brokeness' caused by actual Healthcare services is not a position that any healthcare provider should be proud of.
i was pretty much 'nobody' to ALL.

a girl with a gun was the final straw.
Being shot at is very threatening to a vulnerable person
helping me escape when no one cared was my twin who took even bricks out to save me money i did not have and here we flee our county after i was shot at.  Four years of consistent hell i had endured.
state property i was put in but no state help when it was an ugly scene of terror for a very unwell woman placed badly in with alcoholics
2010 a tiny home for twin sister Margaret was sold, two women in wheelchairs packed this house up, gritted the bottom of the slope for the removal van to enter a cul de sac.  this should never have been allowed happen. (one up/one down, that all it was)
'Brokeness' means that hurt has occurred and a life has been shattered into tiny pieces, not only a life but a soul and part of their whole raison d'etre has been twarted, disrupted, brutally crushed and smashed into broken bits.
such trauma, such exhaustion, such pain

When this happens it can cause lasting harm, enduring hardship and traumatic reliving of past events which can become a person's whole focus. Rather than focusing on a 'goodness' as opposed to 'obsessing' brokedness and how or why it occurred in the first place, causes indivuduals agonising sleepless nights and a sense that they can never find a way through the injustice of it all.

Vulnerable individuals are born but also created.  Once vulnerable usually, always vulnerable.
its a hard concept to grasp that even the outward appearance of strength, articulation and intellectual prowess can mask such a vulnerable individual.
a strength of one with a vulnerability is actually to mask well their own vulnerability through their personal anxiety over it, their fears about it, and the pain of it.

We all know the theory of those who show undue annoyance, who voice a lot and do a lot in time of injustice do so because they feel it so intently that it hurts, this is a mask of personal vulnerability.

i have witnessed the slow erosion of personal confidence bringing about a brokeness of soul, spirit, purpose, love of life and love itself.
i have seen it sap an individual of wellbeing and become stunned into a mute silence of unrelenting despair.

This has happened my twin sister and myself.

I feel what has happened us has literally been 'watched' by society who failed to act on two women being slowly destroyed for no real good reason but bloody mindedness and obstenancy.
It has been callous and cold,unrelenting, unforgiving and a torturous ten years for us both.

we should not have to continue in this way for the remainder of our days.

my twin came home a really happy person, full of expectancy and joy to be around her family and her twin sister and her attempts brutally dashed almost immediately.  She tried to begin retirement, write and document her experiences which were good and successful and this now had been smashed asunder when a newly done up home had to be sold to get her twin out of a social housing unit from hell.

ten years done the road, both sisters feel unsettled and in despair.
both twins are caught up in a relentless bind of a fight for the rights to be treated well or better or fairly.
there isnt a way that any one can contemplate twins with a severe progressive neurodegenerative disease should have to live,in any civilised society.
such trauma, such suffering and pervasive pain
it shows, underneath these smiles is real suffering and undeniable harm done to psyche and physical health - taken in 2017 seven years after the one directly above, it shows.
arguing the minutae, every day for ten years has been an appalling case of utter suffering.
even moving from trauma did not prevent more of the same, an utterly terrible time was ahead
it simply has been an arguement, drawn out for this long for care, for consideration and for the once revered and honoured christianity ireland professed to uphold, the decency of the human being towards their own fellow man.
the HSE demanded 'either or' the wheelchair or the scooter, both were banjaxed and barely operational, but this held sweet memories and joy for me, they took it.
Like all fantasies, we face shortly celibrating our unique Irishness on St. Patrick's day.
we celebrate this throughout the world, where we were scattered to the winds over decades of emigration and thus bringing green Eiffel towers, Green Niagra Falls, Green Big Ben and Green bridges, monuments, rivers, and clothes and Green will be celebrated all over by every country in the world.

yet in the small country where this all began there remains immense poverty of modernity especially within public sectors, especially within the way we value human life and can adjust all economic boundaries to do just that, value and respect human dignity.

our value of a human being is being eroded daily as we watch the divide grow between rich and poor, vulnerable and the ruling classes.
its a different world altogether, but i would have loved to be celebrating our unique ability to care over all other matters.
when they took the scooter, they took away my ability to offer relieve for an hour in an old persons home through 'irish therapy dogs.'  without the scooter i could not bring a bit of joy as i had done.

i would prefer to celebrate goodness, celebrate a sense of wonderful uniqueness that is truely unique, value of the citizens of the state.

meanwhile as i type my blog today i know and have seen silent suffering as twins sit together in a personal 'weep-in' unspoken, lacking tears,but pevasive in intense, solitary brokeness.

this has been caused, not by them, but others.
it can only be reversed by others and not by them.
For ten years the twins have attempted all things to accommodate hacking at their lives in such perverse ways, to alliviate pain they have been virtually useless.
we have failed to transport ourselves out of this intensity.
we hope and pray that such suffering will find an end soon.
give us our life back please, at 65 we need every minute possible.
in the beginning when my twin came home first we had hope of a happy time together - all dashed by the workings of the STATE.
we hope that decency will prevail.
we hope and pray that the state will sit up and answer a well worn prayer and a begging from our hearts to theirs, that we need them to uplift out of this to something akin to security, calmness, fun, joy, quality and care.
not in ireland

i cannot 'do this' any longer.
Nor can i watch it in another any longer.

i am utterly spent.
not in an irish hospital