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


















































In this blighted house: No-one will come

I wish to share this blog by my identical twin sister.

it screams the pain both are suffering.

in days to come i very well write my experience, which actually is a mirror image as placed here.





In this blighted house: No-one will come: Three days ago I had a very bad night. I got out of bed, with much difficulty. no help. I live alone. Single. No one to 'be' there f...

Monday, December 11, 2017

Healthcare in Ireland and no magic word 'enforcements'

Heaps can go very wrong in a country that doesn't want to understand.
i cannot deal with the HSE one minute longer
heaps does go wrong.
How can you explain in plain english how to do things well, sensitively and properly here anymore?
Who cares enough to hear them?

A judge making judgement on a very sad case of a rough sleeper probably said it as best anyone could really, he claimed before him was an example of how Ireland has lost the ability to care for its people.
believe me 'shit' happens in Ireland.  the country left me like this for two years before i managed to get out of the country for the help and diagnosis i needed to try repair this ailing body, all the Irish doctors could tell me was go home and take the 'anti-depressants'  thats the best this country can offer the physically sick and getting sicker
This is correct.
a judge has a person who had fallen on hard and bad times, sleeping rough and losing his parents, home and everything.  He said what he should have and more should too, ' a huge reminder that Ireland doesn't care anymore.

Another is around the idea and notion that those who are sick, disabled and elderly have no rights to decency, care, healthcare and a quality of life.
It's how Ireland doesn't care anymore.

When using any case as a 'case in point' there is no harm using your own for example. Many do this and its the start of a lot of blogging and new forums beginning and flourishing because a 'wake up call' has been sounded, but also because where do you go when the country doesn't care anymore.

We have a healthcare system.   They do not want to care.   They prefer to abandon the ship along with making amazingly reasonable claims how they can justify doing so.

if you do not challenge wrong doing for those least able, then how can uphold the belief to having a moral fibre within?
This country is a country  without any moral fibre left.

If you allow things to flow badly which brings immense hardship and suffering you are complicit in crimes against the people and the state inflicts harm on the people.
It's a crime to remain silent in the face of such terrible, terrible hardships.

Today i had a minister for health's secretary stating that i always ring up complaining.
i swiftly reminded her of my own case being upheld that complaining that no answers are forthcoming is not complaining and that i have aright to complain if they are not meeting the needs of very sick people.

ask anyone with a serious progressive neurodegenerative disease is it 'ok' to leave a woman with her bed like this for about a year?  is it 'ok' not to offer a decent surface to sleep on, when she cannot provide for herself, would any other country leave such a sick person in this manner and does any other state then tell the patient that the Healthcare provider is seeking funding from charity to get her a bed!
This right to contact your TD's and state the obvious is blurred by the healthcare provider being believed by our state own Department of Health.
Yet, i doubt the Department of Health is in a happy bed with the HSE at all, but do not show correct morality in this by supporting the patients, the sick, the dying and the disabled and elderly.

It's wrong for any one to be told by the state workers that you are complaining and always complaining.
you have a right to healthcare and if you do not get it, you complain.
The Law says you have no rights to healthcare, but the upholding of the fundamental rights to healthcare remains valid and enforceable.

you are not allowed damage a person by neglect, this is more to the point, damaging a person by not providing disease specific treatments, oversight by medical consultants is called neglect.  It is against the law to bring harm, do harm or ignore the sick and thus bring harm.

you complain about that.
how can anyone in their right mind be 'grateful' for such neglect leading to serious decline way over and above the disease process they have already.  this is the image of pure and intentional neglect and trauma caused by the state healthcare system.
i am not grateful for lack of care.
i cannot say i am grateful for ten years down the road in a fight for the care i need when those who can afford it here can pick up the phone and make the appointment, see the consultant, be treated well and get on with a quality of life which is respectful of the person's right to have that quality of life.

https://www.herald.ie/news/calling-disabled-twins-serial-complainers-is-unacceptable-says-td-35401611.html








No one believes for a minute that those who have no healthcare  should also have no quality of life and die sooner than the rest, the wealthy.  This is what happens though, many cannot see this knock-on effect at all.
The distain towards the poor is unpresidented now in modern society.

Lord knows the world has never known anything other than members of the human race being disadvantaged, we have always had the poor on this planet, and it would be a bad world if they didn't exist, its right and good they do.  It brings out the best in the rest and it has proven to be so, without that feeling of goodness within and tapping into it, you cannot enjoy a quality of life.
part of making people feel good about living is also wrapped up in the ideal that in 'giving you recieve.'  a Known fact being, people who give, actually feel better than those who grab and take and steal.

Lacking the ability to see good in the poor from many angles is leading the world towards the ultimate extermination of those we do not seem to want - again.

Vowing we would never see another Hitler, every single modern state right now is under a far right agenda of kill the bastards, kill the jews, kill the blacks, kill the gay people and exterminate the defective and the muslim and arabs!  we do not have ONE hitler, each country has its own 'type' of it, own version and insidious and with one thing in mind.
We do not care a toss about each other - really.

Back to the basics of a small island nation, ireland.
Of the country i know best, its getting as bad as any other country, we held once a type of morality.  It was a form that we saw and underneath it was pretty terrible, with the magdelene laundries, the asylums  and the christian brothers and also the workhouses and mother and baby homes. we had a vicious society.
we seemingly cannot move away from such viciousness.

To have a minister's office staff tell me that despite what the constitution says about the rights to my  own home because I am not paying for the adaptation to it, the state forces can enforce you do things to it against your wishes.
Actually it can't.  The state still takes it upon itself to 'see no harm' in forcing its citizen into damaging and restructuring their home against their wishes as viable but its against the constitution!  Being made do something against your will, fact, its against the law.
because you are not paying for it you shut up and do as you are told.
That is the society we have formed.  The secretaries of Ministers today tell you this, i was told this.  i was told i should be grateful to the grant to adapt my home, which i was, but i also had to be grateful to having my home biffed to bits on the ordering of a healthcare official i never met.  Sorry mate, thats against the law!

There is nothing gracious or good about this.
The HSE have broken the law in my home, I know it and the state knows it.
The state also knows that you do not make such judgements as 'serial complainers' out of two very sick women who at the end of their life have had ten years whipped away from them because they are trying to get the care they need.
we still haven't got it.
It's against the law to neglect the health of the state's people.
That is the fundamental right of every citizen to be cherished as equal.

But because you are poor, you can have even the state labelling you 'serial complainers' you can have the state's minister for health secretary saying 'you always ring up here complaining.'

And I will say to the Minister himself, i will complain against the HSE injustice to leave us rot at home as they are doing, you can call me what you like, the whole of Ireland can call me what you wish.

I will say nobly and with truth, the state is killing me and the state doesn't care.
The HSE doesn't care and its our only healthcare provider. 
The state carries out its own extermination programme and we twins are on it.
we have no neurologist, no rheumatologist who deals with serious mixed connective tissue diseases and we have no consultant advised therapies, because we rely on the HSE to provide that and they do not.
That my friend is my complaint.


Friday, December 8, 2017

A modern society grows out of  words: ‘compassion for our fellow man’

To see each individual as unique is a chance for the human spirit, the morality of a nation to shine.

To treat each other badly is a retrograde step and anyone who shows contempt for those least fortunate, most vulnerable and easily attacked is a person who lacks an ability to care enough or even at all.

In attacking anyone who is not as ‘big as yourself’ so to speak, is to behave like a bully.

All bullies go for the jugular of those who they feel they can attack easily, and such bullies are weak, lacking spine to do the same to those who would cut them down to size they go for the weaker, or smaller fry.  

History has this fact well sussed.


When it comes to our doctors being bullies, I think Ireland takes the biscuit.

No one becomes ill purposely, and no one benefits from being ill.
No one fakes illness unless they have a serious mental illness and that Is incredibly rare.
But Women are deemed to have this more than most and male doctors appear to judge any woman from being on this spectrum.

my belief is firmly rooted in the source of a male hating a woman.
I believe too that such professional bullying is corrosive to best practise and a male's distaste for treating female patients, who they have a contempt second to none.

When I became ill with crohn's disease in the early days, i met this phenonomen first, I was made to be psychiatrically assessed before I was treated.  This could even be at a time when the psychiatrist was on holidays, I still did not get attended to before she came back.

I have had doctors say to me ‘you don’t have parkinson's, you just want it' ,yet a decade later I am on parkinson's medication.

Also another one claimed ‘I am going to prove nothing is wrong with you and do tests to prove it.’

Only yesterday after about my third visit to a male doctor at my surgery I had a waving angry man cry out, ‘hey how many doctors are you going to, I am not referring you to any more doctors.’

You wouldn’t think that I had a multi-systemic progressive neuromuscular disease process and that the doctors I do attend I need.

Given that I have absolutely NONE at present its important that I go to those that actually will help me after disasters in Ireland second to none.

You never get better at facing such ignorance but I rounded upon him with my own type anger towards the male doctor species.  ‘you are not telling me who I will not be seeing, I am attending that doctor.  You wont have to refer me I have already been referred and he, did more for me than any Irish doctor who left me for dead years ago.  If it wasn’t for him I would be still rotting in my flat as I was.

This doctor I have to explain is in the UK, he was the first I saw who treated me exceptionally well. i am travelling through the 'cross border directive.'

He was and remains wonderful.

No Irish consultant ever responds to emails, this one responds to them all and has actively encouraged me to return to him for the help I need.  He knows how badly I am faring here and has insisted i return to Queens square London to see the Prof. of Neurology there.

He said to me that I had arrived at him in a ‘mess’ in 2008.  At a time when the Irish wouldn’t even do one single test, he diagnosed me quickly with mixed connective tissue disease and sjogrens syndrome.

Given I have not seen a consultant for this condition in two years and I am deteriorating, would you wonder I want to leg it across the Irish sea. No Irish male of any profession is going to stop me access medical care.

I have never been diagnosed with any disease here In Ireland apart from my hypothyroidism and my crohn's disease, which I think the Irish can just about handle.

What they failed to look at was my neuromuscular disease.
Even though we have geneticists here in Ireland,no one ever referred me.
No one has done a thing.
So once I got to the named doctor above, they then discovered I had a muscle myopathy and the path was set for a host of issues that accumulated alarmingly and to the present day, Ireland doesn’t care a toss and is doing nothing to assist me at all.

Finally I have a diagnosis of sorts, but a bit of a way to go yet, I wont depend on Ireland to go that extra mile with me either and I anticipate a fight second to none to get that help I do need.
I have a neuromuscular disease which is considered very rare.
I need tests to determine why the muscles are dying.

Only recently two phone calls to the UK consultants, gave me hope.  One at a centre of excellence  and (I remind Ireland we are far from creating any centre of excellence for any diseases in Ireland yet, that can be recognized by the EU as one), said do not give up trying to find the cause of the muscle wasting disease.

I wont.
Another doctor in Ireland on hearing of my case,which many have, said the Irish doctors have a difference of opinion on how to treat us twins.
I bet they do as I have already heard about it.
A tad bit of palliative care and that’s it.

But the UK doctors are very different.

They name the tests we should have and name the therapies we should be having.
It is now ten years since the therapies that were required for me were ever clinically advised.

Ten years on we have not had these implemented.

Nor have I had at least four different tests advised done,  for a complex postural issue at night time plaguing me during sleep and causing severe distress of a physical kind.

Many doctors in the uk and some here too say I need tests to determine what is going on and have their ideas, but nothing is being done.

This could have resulted in one stroke thus far when I got ignored by the Irish consultants, I found out I had a stroke in 2013 and was never told.  How did I discover this, on my FOI files.

I can make judgements too.

I judge that the Irish consultants will never treat their patients as partners in their own care and treatment but will bully them to a pulp and say he will do no more and down tools when he is in his pesky childish, arrogant mood.
And all this comes with a link to whether you are a private patient or public.
It will happen if you are public,and possibly never if you are a private patient.

The difference is utterly stark so it is.

I hate the way the men of the Irish medical confraternity are continuing to get away with such harassment of women at a time when they are at their most vulnerable – when they are sick.
Do you think there is a way to get them to behave better?
All ideas accepted.

I for one think they should be a way to name and shame them.




Wednesday, December 6, 2017

4am I want to be dead i say silently

4.30 am is not Dawn
an old dog and a sick woman2009
i was left for dead then,i am left for dead now.
uk doctors gave me back some semblance of living until HSE smashed all that

4.30 am is not Dawn.  It is not even early morning.  It’s dead at night.
One bright young Chihuahua had heard something outside and I was suffering pain inside.

I slip off the bed.

It is too silent for me by far and I hear my own teardrops and the crying inside, the weeping outside and the snippy barking beside.

Two little girls are lifted off the bed, one light and one heavy.
They eagerly want to leg it up the garden path.
Something is prowling they try to tell me.  I pretend I understand.

They go for it.
Flash zipping past a naked old lady they fly.  I certainly do not.
The air feels wonderful on my achy body, naked.  I listen for human life, there is no one.

I move back in and find a light switch, a cup of tea will go down nicely, this I do know.
The Chihuahuas patter back in.  Their paws pattering with scrappy claws always make me giggle.
They come to an abrupt full stop by my toes.   I look into alarmingly cute big eyes looking up at me like innocent children who have been naughty and fear being caught.
I laugh.
They get their piddle treat, and if they don’t know the connection I do not mind, the piddle is done they get the reward.
I can only presume though.
I don’t go chasing phantom intruders or puddles of piddle.

I am utterly weary and spent.
My back hurts and the bed is very uncomfortable.
I am on fire all over and I am bone weary of my life right now.

The expectancy that it could be any different has too been the phantom of ten years.
The Santa Claus has been around and brought not the gift of my life back in total.  L I would ask each year, and am exceedingly disappointed.
It’s not up to Santa, we know.  But we can hope that by even wishing on that star something might fall into my lap.  (Life).

All seems to crumble year after year.

Tea in hand, Chihuahuas on bed again nestling and burrowing into fluffy blankets I clamber on board and find my own space between dominant bodies already deposited with ease.

‘I want to die,’ I exclaim out loud to no one in particular.
‘I just do’.
The rest of the night is fitful and teary.
I ache for dawn and hope by then the deep depression will have subsided. It hasn’t. In fact it has worsened as the day breaks.
The sky is blood red and beautiful.   My soul and my experience match it not.
‘I just want to die right now’.

A mournful piece this, I think as I tap.
It is for sure and ten years of mourning would be right so can I type that? I decide I can and I will.    With the Santa in between and the birthdays and the days, and the nights and all those tears, an awful lot of experience, all negative.

Can I take much more of this I ask myself and start to say I simply cannot.
I tap frantically on to the mediator.  “No more,” “No more.”  “I cannot take any more.”

Evil words for an this system follow fast and furious.
We have a heinous beauty in our midst.  It is a beast of a caretaker more of graves, than births.
Abandoned is the role of succor and security, calm and soothing, giving and nurturing and holding sick and vulnerable.
The caretaker walked off the job and left the wolves to the pickings as they crashed into the life of a person who is too ill to run far.

‘This is an obscenity’ I mutter.  All know this but few are brave to change it.

Notice comes quickly apace my flying words via broadband.
The emails are met with further unsettling thoughts from another and the mediator is not happy with the way my psychological state is reacting to the way this is all going.

The advocates name it for what it is, torture for two, they say.
It has been and it is.
Ten years of it.

Never ever get angry with the caretaker.
But get angry at your country for allowing such abuse to occur all too readily and pervasively.

We have absolute undesirables in our midst.

An organization as powerful as the mafia exists on this fair land of ours.   The leprechaun land,  full of large leprechauns and little ones.

If you are a little one you have no hopes here.

If you are a large one, lets not forget other countries recognize leprechauns incredibly well.   They recognize the myth of it all and the derogatory intonation and words once the labeling has taken place.

Leprechaun thinking
Leprechaun country
Land of the ‘do-lally leprechauns’.

They are right!
I do feel sorry for the little ones all the same.

The message has been typed out and it turns a page or so in my head and that of others.
We all have reached that point of anger so great no one can take this a another day.
It is all obscene.   All knowing that line of civility has passed and we realize that a different way needs to be taken on this case.

Elderly women should not have to endure a week more of this indecency, all agree.
The ultimatum was thrown down yesterday – deliver the promised thus far or we will not attend on Monday.
That is actually quite a stance in light of no delivery and little leprechauns against pretty big ones.

We get armed for a fight second to none, the nonsense done, the delivery none.

We arrange for assessment tools that are healthier than ‘is she able to button her clothes.’
We seek out assessment tools for living, for quality of living, for need over pathetic obligations of buttoning clothes, washing hair and wiping up after toileting.

Living is made of Living we say.
Not having your life sliced up into hour-by-hour, basic tasks and numbered and fractioned into help given if any at all after the tools have been assessed.

It doesn’t matter to me when I eat, whether I dribble, wash, button or I can swipe a wipe.
What matters is to laugh again, run with help and be engaged in the land of the living.
Not in the caretaker’s bone yard with one foot in the grave.

I weep again more at the closed off room at the top of the stairs with the psychologist.
‘Have you got assessment tools for quality of life?’ I ask.  She bustles off.  I limp my ataxic waddle to the toilet. No need of her help to blush and flush.
We sit down with three sets of tools.
PTSD, alongside quality of life along with one or two more.  Measuring normality against the obscenity we both are going through right now.

Assessment tool for the dead:

What time do you get up?
What time do you have lunch?
Will you need help chopping your food?

To be replaced with:

When I am old, I shall wear purple, and spit.
I shall sit down on the pavement when tired and I shall rattle my stick along the railings.

In other words, I care not a toss about you knowing when I arise and when I am full and when I am dirty or clean.

No, it also is not normal having three professionals glare by the doorway to my bedroom at my own private sleeping arrangements.  Three people who are not relatives, who couldn’t care a toss and have less skills then they believe.

They are doing ‘an assessment’ of need.

I ask ‘is this normal?’
“Would you have three people standing in your bedroom discussing a bed with you or do you get a measuring tape and decide on the bed and then get it?” I ask angrily.

“Do you need three medical (sic) professionals to consider where the furniture goes?”
‘No,’ they admit.
“This isn’t normal behavior,” I say.

I want them gone.

A letter is swiftly written when they depart.

“No health official enters this home of mine again without permission.”  I bang down the keys. 
I feel good.  They are gone.  I have stopped it.  It’s really good.

As far as this old lady feels right now, this moment in time.
I am tired of them all, and beg to be released a relationship of complete dysfunction and disharmony.

This is the land of leprechauns like none other, in a world where time stood still and a land forgotten stuck in a time warp of incredible ignorance and a notion of grandeur beyond their station.

A Macbeth like moment I scream inside with determined defiance “out damn spot, OUT damn spot” and lets hope I won’t go mad rubbing the skin off the wasted bones.  



Ann do not end poetry with the word, wanton!