Friday, December 27, 2013

In this blighted house: Chritmas is over-2014 becons

In this blighted house: Chritmas is over-2014 becons: Yes, I'm pretty pleased too.  It's exhausting to one soooo sick. The stress of it mind-boggling when everyday matters like putting o...
a connect to  my twin's blog another 'must read'

Monday, December 23, 2013

there is more in society than children of the future

why in ireland do we worship the children so?
we give all under five a free medical card INSTANTLY, its illogical.
we give all babies and mothers such profound care in the public health system that the poor nurses do nothing more than baby clinics for everything these days, leaving vast amounts of vulnerable unattended at a fragile part of their own lives.
Mothers and Babies actually do very well in this country, there will always be some that are not doing so well.
but we do know for sure, most people in the catagory of disability, ill health and old age are not doing well at all.

Let me consider one group as a group but they are indivduals, equal to you and i.
they are what we call 'the elderly'
remember too, that no one is 'disabled,'  no one is 'vunerable'  no one is 'needy.'

why do i say this?
because these are labels.
we are People living from birth til death.
when adverse circumstances occur we are pigeoned then, so that we are 'seen' easily or in most cases not so easily.

we lose part of SELF when we become part of 'disabled,' 'elderly' vulnerable and needy.

we are all humans.

so why then do we forget my biggest group for worry, the elderly?
tell me why it is ok never to think of the elderly as needing as much if not more care than the under fives?
why are we ignoring the parents of the generation that now has under fives.
are we actually forgetting them for a reason and if we know the reason will someone tell me after they have read this.

because when we 'forget' these groups, and the elderly are about the most powerful. we forget what they can offer society.
no, we may have to pay for it, but then all service providers do get paid!
what is the wealth of the elderly?
how valuable is it?
it is vast.
the elderly oose wisdom, through their ways of getting by, the ways of passing time, the ways of education, detection, instruction, giving and seeing.
they will have seen far more than an under five, therefore they could give the children who have past five to say under ten a wealth of experience of how it can be done, if modernity has worked.
because not all in the modern age is working.

certainly to produce mini emperors and queens, is not going to benefit society long term, for its an unbalance view which will become a type of psychopathy and sociopathy, people will actually not be able to feel for another, if they believe only they count, and thats what we are now producing.
children who are made to believe only they count and that the world revolves around themselves.
they are going to get a great land when they reached 60 and onwards.
they will be dumped, and by the time they get possibly a decade earlier than this the way society is running so fast they will be dumped sooner or exterminated as useless sooner.

they then will forget that they created this for themselves.
what the elderly can and do do for us is pull in the reins and make us think of consequences.
and the consequences of divorcing from family of all ages.
within the group i speak there is unspeakable loneliness and global neglect.
not only have the children abandoned the very people who have given them everything so too has the government and society.
we corral the elderly into nursing homes.
these are not homes by any stretch of the imagination.
they are a form of control for cost effectiveness, and even that isnt working because its not cost effective.
the children of the day think the elderly are cared for in these places.
they are not.
the only thing that happens in these places is, that they are kept alive longer, to realise how lonely they are, longer.
and we do this to them.
instead they should be in the hive of activity,the centre of the family, embraced for their contribution which is anything but small.
they should be in their homes, with the help we can give them, not neglect and distain for staying alive longer.
we are creating a society that breeds neglect at every level.
and when this happens society not only loses soul but loses the chance to fully understand.
we are producing a society where more and more are bored, lonely and on their own for too long each and every day.

if we could understand more about why elderly are important, we can make their lives a living joy and healthy living for their end.
rather than the misery that detachment from this group has caused, this same detachment coming sooner with each generation until not only do we have the misery of detachment, loneliness but the misery of living, sooner rather than later.

we must embrace everyone as equal, and that means our elderly.
our grandparents and parents all those who never married, the aunts and uncles and then we all will truely be alive with connectedness to the wealth that if variety in the human experience.

embrace the elderly for Being human is being alive and being elderly is being human wanting to be alive.

Sunday, December 15, 2013

bankers, bailouts, charity and disability - dirty words

to me, fighting is the disease of being who i am.
it reluctantly is part of practise, part of knowing there seems no other way.

what do you think i may be fighting over?
it isnt anything that most would be because this part of most lives is relatively well managed and controlled so that it isnt a difficulty problem or either isnt really on a personal agenda.

one day it could be.

when that comes, dont say i didnt warn you because then the disease will sicken you to the core and leave you war weary for ever more.
there isnt a let up once it sets in.

bailout glory is not the glory of the people.
its a glory of 'construct' to the powerful and to those that way to feel 'better' rather than 'dutiful' and 'caring'
being a politician exhonorates you of the latter entirely.

but then who is dutiful and caring.
the people.
get together and raise money to fill gaps but the gaps should not be there, because the money is there.
funny no one knew this!
the diseased did!
once you try to surgically remove this disease new thoughts are coming to the fore, and further investigations take place.
everyone with the disease do investigate and themore they do the worse it appears.

occassionally we see it set in stone in the media.
how long it stays in the collective concience is a bit less well determined.
i should think not long because collectively we are not such a diseased nation to allow it impinge on personal life.
but here it is, stated in the media and not for the first time.
this is a warning.
that the disease will in Budget 2014 are being cut services further, care packages, equiptment and much more will never be available again.
the government of the day are abjucating their responsibilty but causing a culture of vultures in a sector that never was to be a business nor a top up on the citizens of the state who are affected by disease.
Disease here i mean three things and very forcibly i state it effects every family in the land.
its called disability, becoming part of the elder section and being very vulnerable, sod it if you fall into all these catagories as i do as too my twin sister, who still fight the disease and the cuts
we still on the fight for the powered wheelchairs which are as in this article states part of our rights for nothing has changed bar the fact we are losing ability to walk!
please read how eloquently it is put here and excuse the typos in this missive, too tired to go back and correct this time.
talk soon

Friday, December 13, 2013

the irish bailout- is it glorious? i don't feel it.

ireland now is exiting this bailout which caused our county to land on knees.
the trouble being, the knees were those who could least afford this.
we saw far more homelessness, we saw disabled and elderly being crucified and will be crucified for many years in the future because indeed we are told already that there will be more social and medical health cuts in budget 2014.

i do feel that the austerity has been profound for the least able.
we didn't have equable responsibility as a state.

the rich saw no cuts.
no cuts at all.

when people talk today in the media, we are talking about the positiveness of increase in jobs and economy.
but not one person who is working within the disability sector has been asked questions in the media, only those in business, policy makers and economists.
who is asking those who are ill, disabled and vulnerable how it is to be exiting the bailout today?

i can say on the 'historic weekend ahead'  that i have had prescription charges trebled in the cuts.
no services provided for my health care which will make life or my health anyway better or my quality of live, health any better.
i am being denied even a wheelchair of any use.

i have at present a wheelchair so clapped out and reconstituted that it continually breaks down continually lose body parts and now been told that before released to me, that the bolts which hold the wheels on are in fact the wrong ones.
yet always the HSE has consistently said that wheelchairs are vetted by engineers before being allocated to disabled people.
this isn't so.
this one wasn't and this one lost wheels.

i think people have to start to wake up and feel for us.
because as a commentator said today we better not sleep walk back into the future.
can we ask the irish nation not to sleep walk all over the people who are your brothers, sisters, aunts and uncles, your wives, husbands, grannies and grandfathers.
because, believe me we are leaving a vast swathe of our fellow human beings unaccounted for in quality for their life which is about the only life they will have.

when i think about preciousness of life i do look on this as equal for everyone.
not just those who can contribute to the pot.
not everyone is equal in this and a lot is down to luck and good fortune of who you were born and how you were born.
but does that actually say 'well that is just tough bloody luck for you, none of my business.?
this is what is being said.

I have not, ever in the past few years been supported by a family who have the means to support two very sick ladies with chronic, neurodegenerative disorders.
neither my twin or i have received the following:

a gesture of a meal at the family homes and extended family homes, only at festive times.
a gesture of a trip out for lunch, theatre, film or a drive, not once, oh, ah yes, once and we had a ball when we were taken to a film "the life of Pi"

further, we have not had support by way of anger by our family members at the state of the wheelchairs we have been provided with, instead we have received the anger from siblings for trying to start a fundraiser for these chairs.

i have not had nor has my twin, being delivered a simple meal to either of our homes, by more healthy family members, extended and other so that at least we might have a meal we didn't cook, have to go to shops and struggle through checkouts for.

we have not had either a family member support us to a doctors appointment, speak to a medical person about our situation and ask questions about our future, or our health or our disabilities and illnesses, they wouldn't be that interested and some hardly know what is wrong.

we have not in all these years had help by way of  another family member suggest a carpenter, builder, van repairer, electrician or other when we needed such advice.

we just have felt totally alone in everything with the only suggestion ever made being we should go into the funny farms of sheltered accommodation.

it is fact...we are in dangerous times for sick and elderly and disabled.
even some of the carers we have, (and we have only a limited amount we are by no means being 'cared by the state.' a belief of the wealthy family and extended family), been told that most sick and disabled do have family support and its tragic that we do not.
this has been said from the district nurse, by the doctors we have and by the home help providers.

they all tell us that we are unfortunate because in these times, those who have family fare better and its rare to not have family.

do you think then that my twin sister and i are not grieving right now?
we are, we feel the loss of this support and never having it when we could do with it.
we feel frightened of the future.
we feel alone and frightened of the future.
we feel frightened of the level of health care, for honestly, those who have family who can demand better usually get better.
when you do not have this behind you, you are at the mercy of the state who couldn't care a shite about you whether you lived or died.
if you have family who cared, then you have a chance or half a chance of living because they will make sure the state will not kill you off.

if you think this is extreme thinking, its not only my thinking, its that of others who have said the same and to me and also when in conversation with disability groups, media, commentators who are not the commentators on the radio right now, they say the same.

we as a nation need the support of each other more than every before.
my twin and i have no one bar the few home help ladies who come and help us for the few hours they do.

there again the family can retort that we are 'lucky' and feel fully convinced that these helpers are doing everything, that is cooking, cleaning, washing and shopping.
this is far from the truth and is self soothing perception to help them and help them get off the hook with ease.

what about love in all this?
isn't that too part of being family?
we don't feel loved.

we have been told already that one sister is taking out a barring order so we wont go onto her land, but this threat has passed and never came to pass, but it was said,  because we shouted in her car park and some of her staff might hear.  We shouted for good reason, not because we were obnoxious.

we do not feel loved when we were not invited to a family wedding and nor a 90th birthday to a now deceased aunt we adored and the pain of being left out is enormous for myself, i loved this woman and i was not there for a great occassion, because i was not invited.

we do not feel loved for being left out of not attending a sisters wedding before her husband of decades died a horrible and sad death.

At christmas time its about 'where and what will we do with the twins, ' in other words, who will have them.
and sometimes no one has.
one year our first away from the county of our birth no one had us, we were together alone and saddened.

this year i am having my brother and his family and thoroughly looking forward to this and hope i will be able to do it well given i am so jaded tired.
but i am looking forward to this.

but we have all these sorts of things happening right across holy ireland right now.

wealthy still wealthy.
some have support and others completely and utterly abandoned no matter what the social class or criteria.

we must all pull together to give everyone a chance for equality.
that means the disabled count.
the sick count.
the elderly count
and family count.

all count in a fragile world where we are living for only a very short while.
does it feel that fair that some are abandoned to constant pain, struggle, fear and lonliness and poverty and homelessness and suffering?
especially when we all can do more and do our bit to make it easier.
if you helped you are giving and the feeling of giving is more than the feeling of taking.

i am angry tonight.
we will as a country not change much before i die.
and i am dying believe me i am dying and dying in pain and misery left as a piece of shit amongst both family and society.
the only reason why i have a roof over my head is because of my dad's wonderful gift of leaving my twin and i the home of my sister above us who died prematurely.
we owe the roof over our heads to the dead.

but myself never having worked, only have a disability pension.
that is it. final.
so will my end be that.
i am a frightened lady.

Wednesday, December 11, 2013

a grubby galling, perverse state (ireland)

yes, we can chuckle as the best of them.
but we are cunning, cute and crooked.
to the bone.

bone crushing crooked.

we write these wonderful reports all around the place, pat on backs of our colleagues, and all in for a bit of stroking each other as if this is some kind of sexual disease.

we stroke and stroke and cover up with many layers of blankets.

we do not want the truth out.
we also do not care much about others, not really.
again report after report says we are so jolly friendly, and we have the best environment to work in and we care, oh we care so much.

we care more than most.
we still have a morality in our humanity.

not a bit of it!
we lie, we cover up and we shore up the crooked the wealthy and damn the least fortunate.

the recent image of the red faced Reilly and the distorted smirking Enda just about says it.

we are winning the health battle says Reilly.
there, the disease again.  the chuttling cackling laugh.
it isn't funny.

pain and trauma is perverse.
pervasive and all inclusive, within the disability groups and within societies least able.

when we want to ask each other the 'whys' can we actually find the answers?

well, many have seen how it all works, but no one seems to be able to make the people who are paid to deliver, accountable.

we have two systems.
the HSE is there to deliver a service.
they are paid by the Department of Health to do this.
the Department of Health will tell you that they have nothing to do with health, when you ring and say the hSE is failing you.
but they PAY the HSE, surely to god then they have to make sure they are paying people who are doing their job well?
NO, actually, the HSE do not have to do their job well to get their pay salaries.
they just have to 'pretend' they are doing their jobs well, balance the books, in pretend fashion and cook all around.
the HSE only have to lie through the nose to cover their tracks of inefficiency and any query asked by the Department of Health, from a citizen of the state, well they lie about the query thus making the person asking the question of the government about the HSE out to be the liar not the HSE.

we know about this at this level.
the disability level.
we see it happening, we experience it, we read it in our files and yet - the Department of Health believes the HSE version and can then go into the media and say "the HSE is 'not fit for purpose!"

If it isnt fit for purpose i asked a 'civil servant' in Reilly's office today when is the HSE going to be disbanded.
she couldn't tell me.
but i say you are a right hand of the man himself and do all his bidding, why can you not say.
she didn't know.
why did she not know?
did she not know?
or is that another lie now one of many.
if you ask anyone in any department head office a question they must be told to tell the caller "say you are just a civil servant."
thats what they do.
'I am just a civil servant!'  Yes, but part of the governments office of Health!

We have sort of shorties from the minister's secretaries, be they the Minister for health or the minister with special responsibility for disability.

'the minister's office is looking into this.'

If you believe that you are more fool than i thought.

we also have a ministers private secretary say:

'your situation is being addressed.'

which also could mean absolutely anything at all, even nothing at all.

certainly the situation i talk of speak of is the only situation i have been speaking and talking of for over two years and they still are not being addressed.

lets answer now the series of innuendos that is put into the public domain about an individual.
if an individual asks a questions many times, they are labelled.

and the label is libelous, but you can say that, and you cannot even prove it, but it is.
why, because these sort or snorts are sent to all the departments of the HSE within your own personal medical files so that all departments are to be aware that your question is a complaint when it isn't, its a question.

what is the HSE doing about my wheelchair situation?
this isn't a complaint, its a question.

when you are labelled a person with a behaviour disorder of complaining, i kid you not, there is an equal one for liars.  its called pathological liars and psychotic thinkers with no concience for the truth at all.
thats actually is a medical condition.
it is known that poor sods with psychosis and sociopaths tend not to be that truthful and have a propensity to lie and not know the difference between truth and fiction and other.
its called blurring the boundaries of reality.
 The HSE and the Department of Health, Reilly's office, that is, has this in spades.

how do you know?
well you would if you were at the bottom of the rung as in being disabled.
it hits you in the face daily.
and leaves you floored.

we have a European Union, well there are a lot of europeans there, and we little nation is amongst that lot.
yet us, that is Ireland is about the only one who has not ratified the EU convention on the rights of people with disabilities.
nope they have not.
in not doing so they are breaking an ethics code of bond which they agreed when they decided to join the European Union but then Ireland is Ireland.
if joining is advantageous they will screw it, but if it not then they will ignore such facts as human rights.

for its own citizens.
but then we as the citizens,  we are not to be trusted, we lie through the nose, and tell porkies so we do, eg 'my wheelchair went into a wall and lost a wheel that travelled half way to dublin'
it isnt a nice porkie when it happens.
i was sitting facing real granite.

Sisters fundraise after wheel falls off reconditioned wheelchair


A woman whose wheelchair went into a wall after one of its wheels fell off on her way to hospital has launched a fundraising campaign, with her twin sister, in a bid to buy two new electric wheelchairs.
Ann Kennedy, a former artist, and Dr Margaret Kennedy, who campaigns for victims of clerical and institutional abuse, have a neuromuscular degenerative condition and depend on wheelchairs to get around.
The sisters, who are 60 and live in Greystones, Co Wicklow, were given temporary, reconditioned electric wheelchairs by the HSE in spring and told they would receive new wheelchairs once the funds were available.
The sisters claim their wheelchairs are inadequate for their needs and that Ann’s wheelchair is “not fit for purpose”.
Ann said she was on her way to St Vincent’s Hospital for a neurologist’s appointment on July 29th when the left back wheel fell off her wheelchair.
“I shot right into a wall,” said Ann. “It was very distressing. I had to shout at two people in front of me to get their attention and they picked up the wheel and waved down a taxi for me,” said Ann, who also has Crohn’s disease, primary Sj√∂gren’s syndrome and Raynaud’s syndrome.
“I desperately need a new wheelchair. I’m using it everyday at the moment. I don’t think it’s safe. It’s hardly going up a very slight slope,” said Ann who had the wheelchair repaired.
A statement from the HSE said that it did not comment on individual cases.
“All applications for aids and appliances are based on a assessment of need and prioritised within allocated budget,” the statement said.
“All appliances are assessed by an engineer to ensure they are fit for purpose, repaired if necessary, cleaned, decontaminated and made available for reuse.”

The Wheels Appeal: Ann Kennedy or Margaret Kennedy: Ulster Bank, Bray, Co Wicklow. Account number: 11281838 and sort code: 98 53 75

my situation is about the wheelchair, among a few other things and the minister says its being addressed.
well, i wonder when.
by whom
and all sorts of questions arise, but be very very careful because you could be labelled pathological remember your own words, this is a question not a complaint.
which it is, when?

'when' is a question.

This blog is a complaint, about how the HSE and the Department of Health couldn't tell the truth and are people who blur the boundaries of reality and never deal with much at all.
'pathological liars' i call them.

that isn't a question nor a complaint, its the blatant truth.

how do i know this you may ask again.
because i experience it.
every day and its not going away at all.

that is one truth for sure.
the next being, it is recognised that the HSe isn't fit for purpose and that the outgoing ombudsman's real regret being,
she never managed to have an adult engagement with the HSE.
we know certain truths.
we also know certain lies.

when will the HSE be abandoned?
well no one knows.
or do they?

My biggest question today is 'when will either the HSE or the Department of Health learn to tell the truth in anything, so that the citizens of this state will actually know what is the difference between their lies and their truths, we do have a blurring and we need to know.

finally, when will the government of the day ratify the European convention on the rights of people with disabilities?

Tuesday, December 3, 2013

to hell and HSE

sorry my supporters on my blog page.
i have not been writing much.
we have a situation you see, its pretty dire too.

I have been sick but alas you all know that much.
Alas you also know that i also have another situation and that is with my HSE care provision.

try as i might i cannot change this situation and its beginning to take its toll.
whether this is the intended response due to no response from the HSe i am not sure.
it does seem this way.

this is the trauma they want to create.
the PA's of the 'managers' all say it isnt, but i say it feels like it is!

try being so unwell and sick and disabled and FEEL but also KNOW you are abandoned?
try feel that feeling of isolation.
try thinking around the fact that no one visits, no one rings and no one cares.
try thinking about having no children, no sisters, no nephew and neices, no friends, no parents and no neighbours, you then can realise what it is to be both myself and my twin sister.

why has this actually happened you might say, its not that normal.
well no actually it isnt.
its not that we are abnormal, this isnt the case.
we are though different.
we would be classed as different and alot of it has to do with 'deafness.'
Deafness produces an individual that has a type of communication that is outside what most would understand.
the emphasis on word and language is different and it can all be veru loud and brusque.
underneath you have in fact two people aching for the laughs, just like anyone, the loves just like anyone and the banter just like everyone but it doesnt happen.
people find it tiring to have to repeat themselves mid conversation.
they find it irksome to see the difference that causes them to be cross.
cross because they lack understanding from the perspective of a deafened individual.
ha! i knew this too about my father, who became very deaf when elderly.  it drove us all nuts.
he thought everything was absolutely fine!
he got angry at us getting angry.
he couldnt understand why he could not have the tv blaring.
'its not THAT loud'  well , er, actually it is.
now thats saying something to twins who only have 30% hearing left.
he never answered when spoken to, walked away when you are speaking to him.
moved off when you were speaking to him.
never responded when you called him to din din, and caused someone to go looking for him.
he never answered the phone and that got left to someone else.
never answered the door, that too got left to someone else.
hardly ever laughed at a joke cos he never heard it in the first place.
never conversed at the dinner table and that was tough when it ended with only parents and deafies like my twin and myself.
it can make for strained relationships.
i guess all were happy when the tv was off, and we sat either asleep in the sitting room or reading a book, peace seemed then to reign, but normal discourse wasnt open to ye when dad was around but dad was old fgs.
so now us twins are deaf and we are alone.
the brusqueness we hated is there.
but not only is my chihuahua a marshmallow so too are my twin and i.
dying to please (the pun intended), and dying for the stroking.
it doesnt exactly come in spades.

ah, now on the other level of hse which was actually the title of this blog.
seek and search as i may i failed again to have an official of the hse return my call.
we remain, us twins with no physio, no wheelchairs, no ot service, no social worker, no psychological support no nuttin'
i spoke to John Hennessy's PA, (you wont get top brass, ever)  just like you wont get the president or the thaoseach. she had remembered me from my phone call made months ago, he, John is the director of primary care services in ireland.
so the pa said she would talk to john this guy.
well, have i heard this before, yes.
i am going to keep a notebook of all i contact within the hse on a daily basis and the response i get.  on one page i shall put the time, date and who i rang and on the other i shall put the response.
you can bet only the left side of the notebook will be filled.
it will be interesting too to  note, who said they would contact and how many people both said this and get a tally of how many people you actually tried to communicate with, in say a month.  about something that you needed.
lets set a task then.
i shall try and attempt get some movement for the wheelchair debacle, and i will document that alone and i will get back on here and tell you how it all went.
i have predicted the outcome before i start.
it will be where i start and as i started this.
like, here, as i type.
nothing will move further than this stance i can assure you.
if it does i shall promptly fall down and die, instantly and the HSE would love that.
one less to bother about and one less to provide a wheelchair too.
but this may be the sort of jokey side of things, it isnt that funny at all.
we do not get services, period.  and no one really cares.
its also known within the disability services that the media too will not report on anything much to do with disability and especially if it pertains to adults.
they may get the three day wonder with the kiddies, but you can forget it when you contact media.
they aint that interested and they wont even bother returning your phone call either!
my twin tried recently, but she had the phone put down mid sentence.
that was it, out.
you know we must too be the only country that doesnt protest about injustice of its own people.
there are some areas that people do protest.
sexual abuse is case in point.
people get very aroused over this.
because there is an understanding here when there isnt if you are not disabled.
people also get very excited when disabled or sick children suffer.
but believe me most suffering is pretty much equal.
incomprehension of suffering has been cited in the instances of children suffering, but then children too have a magic set of thinking values.
they do have that to sustain them.
adults see far more mobid feelings around sickness pain and disability.
the wards in childrens hospitals, 'sing'
did anyone ever see a ward for adults 'sing' in the same way.
like murals and nurses all jovial and everyone pulling out all the stops, red noses and angel wings or the best plum pudding on the campus.
we the adults deal with it, sour and demour we deal with it, grim face we have to be that stoic cos 'ah jesus, fgs' will you forever stop moaning about everything.
well, i would if there was red noses around me making me laugh, or sugar with the  medicine.
no sickness is about evened out amongst the age groups believe me.
but you dont do you.
so i didnt win on that but i rarely win on much.
i just dont win.
i want some red noses from the hse too, but they may think i mean bloodied.
they could be right.
there is such a thing as wanting to throttle some of these 'superior beings'.
well, no i dont think they are that. but they do.
so i do want to trottle.
i am waiting to die see, and there isnt much action from the hse to help me die in some kind of decent fashion.
my twin told me today of an individual who has liver cancer.
the hse would fund that over to the uk for treatment abroad but there is a six month waiting list.
he is on the verge of dying now.
so he has gone private and can ill afford this. but you would if its a case of life and death.
he is important to his family of young children.
but the hse dont see a triage system might work in this case, cos they dont think of this.
he is off now in uk and having the tests needed today.
i pray he gets a liver transplant or treatment or whatever.  he wont get it here.
a guy in canada had a transplant and was out of the hospital within ten days and having now to report back only regularly yes, but not that regularly. he had the transplant was walking the next day and out almost by the end of a full week and a few days, i couldnt believe it.
i do know this, its a relative of a relative of a relative by a marriage along the way so i know this as fact.
not bloody ireland no.
Enda, do you read my blogs, so we a 'modern society? ' would you like to say that again, enda, third time lucky,  ...'what are we?'....we are a modern society....'what are we?' ....we are a modern society....'what are we, er waiting for?'  to be come a modern society.
not in my lifetime alas.
tweedledum and tweeledee we are here.

Monday, November 18, 2013

queuing for beef at the local church and - the cous comes to town!

today was a mixed bag indeed.

an early start on the road to a shoe fitting appointment, to get there at nine to be told i had to wait til 2.30...but wait....there was a cancellation!
my new shoes fought so hard for via a senator John Whelan and are now found to be so disastrous that this second professional told me they are totally unsuitable for my types of disability.
but he said the hardest part was for fight to get a new pair.
remember i have deformed feet but now i could be waiting for a full year to be sanctioned a pair i can actually wear.
who is to blame over giving me a dreadful pair of brogues fgs?
can i make shoes?
who makes shoes for disabled?
a person trained to make shoes for disabled?
should he/she be employed if two out of three professionals say, 'oopsie, nope, not right them there brogues not right for those there feet!'

if i could cost all this, and i think i will.
cost the hours spent fitting (at least five times).
cost of materials, salaries etc we will find that our request to save health service costs are not due to me, but those that give us this service.
this hasn't been a cost effective way of doing things, and yet i was told by two out of three that the shoes given are inferior and that's why i was made drive over 20miles five times and back to have them sorted, (in the first place).

On another cost saving venture i have to draw your attention to the fact that contrary to the Minister for Health, giving me an OT also over 20miles away is proving even less than beneficial.
she has made two journeys to me.
the first to get to know, ask what my needs are and to get back to me.
my needs were rather simple.
small items needed.
she came back.
small items not felt suitable and i was to sit in a chair rather than lie on the sofa.
but i want to lie on the sofa!
she drove 20miles to tell me that (phone call?)
also no bath seat, she forgot the measuring tape, last time - if she had asked i would have given her one of several.
and no mention of the cushion i lost when my wheelchair went into a wall.

oh, reciting the incident of the wheelchair today at the hospital i was met with an 'oh CHR...T'

I had also text my home help not to come as i would be at the foot clinic.
she came anyway and stuffed a note in the door.


anyway i wasn't best pleased and went weak at the knees.
why, cos i am sick of the stress of being sick.
the problems just seem to be LIVING.
trying to walk is LIVING.
trying to get things done is LIVING.
but all the time this can amount to phone calls after phone calls, stress of explaining explaining begging and more begging.
crying and more crying.
with no let up from the demands of trying to get the basics of needs met!

then i rang the disab advocate and told her i simply couldn't take anymore, bawling down the phone, sniffling and consumed with despair i whacked on crying'  suddenly i noticed that no one was answering back.
my phone had gone dead probably a long while back.
i kinda giggled then at the absurdity of that.
she was saved!
by the wire.

or lack of it.

then i straightened a chair here and a chair there for my cous was a comin'
and i rarely see my cous.
so delighted.
she is the same age as myself and looked so so glamorous, oh wow cous if you read this it was the first thing i noticed.

healthy as friggin hell.
she wondered after a monologue did i not get tired of all things to do with health.

and i have thought on this too, (see above).
i am tired of all things to do with health.

but intensity to have to deal with it 24/7 you find that the record is on permanent stuck line.
it wont move forward nor back.
its stuck, round and round.

how long since i spoke of art or 'rt or photos or stuff, other.

and then we spoke of the old fashioned typewriters and learning to type before we took up  a more acceptable or illustrious occupation.
i roared at the memory of the training colleges.
she described it well on the old banger typewriters, with circular keys on a baby spring like mechanism.
we trained to change type writer ribbon, i bet the young 'uns are wondering what the hell i am talking about.
she then described photocopying in the men's toilet in a certain prestigious institution of ours.
because that where the light was, so one foot in the men's toilet to get the glimmer into where the photo copying machine was after - the lights went out, and they went out at the same hour everyday, so if you went over the time scale, darkness.
now what would you do today if everything went black - on the job?
it doesn't happen.
we can safely say the work conditions were not good but we saved the planet i guess, in our stringent use of electricity.
we were not exactly in the candle era, but close enough.
i remembered a certain firm in London where the metallurgist fell in love with an Irish temp typist.  he who would kneel on the floor cutting out interesting pieces from the London papers on exhibitions etc for this woman here fresh from the typing pool before she launched into her fame of working on 'watership down.' the film.
bunny making.
the first telex i sent to south Africa after i learnt how to turn the machine on.
she enjoyed the chaos of that famous still famous Irish institution which had her putting foot in toilets to bring on the lights.
i was actually in a local hospital for the mentally compromised individuals when i got a job at the same place (~Ireland is very small) and the spin of the department i was in caused me to last not longer than two weeks.
chaos is one thing in the head but when it transcends that into the very physicality of a work environment, i could have well gone under entirely.
We both survived.  Needless to say.

i recalled to her the day i nearly got run over by a  Volkswagen beetle, beige in colour as i ran across the road with my typed papers belonging to the solicitor i typed for from 8.45 until 6.45 every day with an hour for lunch and every second Saturday for the full sum of wait for it...£14 and that's another insanity producing environment, about six inches away from a brown papered wall, pealing at the ceiling and i know for i looked up there often.
that's the office i had to sign a legal document in, at 18 and witness to someone making a Will.
when i asked what i should put down for my job description i was told 'Spinster"
yep, that's a job description in the 70's.
eat your heart out.
it wasn't exactly the good old days.
you have it plush for sure so never complain.

no such things as walk outs if the air conditioning wasn't on.
no such things as walk outs if you are discriminated by gender
you stuck it or got out.

i then got thinking of the beef i queued for long after this.
the time i came back from London and my short lived live in the film business.
i was too shy to go to art college to study film.
i was afraid i would break cameras.
i came home to Ireland on the boat, sank into depression and ended in the local asylum.
to this day no one forgets.
cos the word 'psychiatric' is written on every file on me, so you can be a raving lunatic from the age of 18 to death, even if you were never.
and i was never - proven, got an apology for this but we do not have the personnel in Ireland to erase all the files where the word 'psychiatric' is written.
you can KILL someone and be legally entitled to have this fact erased after your prison sentence.
you have to wait til you are 75yrs of age or til your dead to have the word 'psychiatric' erased from an Irish personal file or medical file.
even if you went into that system for loneliness, shyness and terror of your fellow human being because you were just a shy, too young lass who didn't cope well with others, cos you freaked at the little confidence you have.

show me a puppy who whimpers at the noise of a fire cracker.
that's me.
cracker ed.

i deviated here a few paragraphs back.
well....probably horse, most probably horse.
i queued.
that's when i lived in an establishment where i had no running hot water and boiled a kettle and filled a basin and washed by the fire for four years.
baths, that was for keeping coal in, if you had one.
i didn't.
i didn't have a bathroom either.
but i queued for the beef (horse) and because a discussion came up on face book as to whether you gave a beggar a copper, was he genuine or fake, i thought of the beef.
we may not need to beg for food in Ireland - yet, but there are reasons why people beg.
whether you give to the beggar.
i would actually do so.
who would make a living from begging.
are you preventing him/her from getting the next rolls Royce if you denied him the price of a coffee?
do you resent that rolls Royce entrepreneur?
well, forget it.
you don't hold out the plastic cup for the coppers to try make enough for a rolls Royce.
a drink of wine, a hostel bed, a blankie or socks yes.
but not to be a millionaire.
i wouldn't be having intellectual crosswords on this one or chess for that matter.
its the state of the nation, education when it comes down to this sort of debate.
Live and let live.
think of the horse meet, the photo copiers in the men's toilets.
lights out at 6pm like it or not.
men kneeling on floors cutting out newspaper clippings out of love.
the local lunatic asylum one side of the road, the glam the other and both did meet.
the car for the people nearly running me down and saving me a life less spent.
and the fruits in the pudding of the stories i begot when nothing else.
not even shoes or wheelchairs.
and we still have the conversation around health ad nauseum.
because we are in dire times.
all of us.
beggars and beggars and beggars all.

Friday, November 15, 2013

remember....lest you forget....

yes i did.
i met the hse official.
remember the one i told you i was about to?

she came.
with nothing.

this was a visit about sofa risers to make it easier for me to get out of a sofa where i spend a good deal lying down.
and about a small chair for inside the bath.

the sofa risers were discussed on her last visit.
she then drove 32 miles back to her office and decided to discuss this with her colleague.

she then came back to me, 32miles and told me the discussion took place and it was decided that as my wrists are quite weak then there was no point helping me out of the sofa as i had nothing with arms and needed to be in a chair!

if you have arthritic knees then, it surely helps a lot to get you in a position to raise further by pressing the body weight against the sofa.
but you cannot do this from so low down.

this had me in disbelief that they could even work this one out and sort of belief it the theory of it all.

so i was to abandon resting up, and sit in a chair.
that's the solution then.

i asked about the bath chair.
well, ah.
she forgot her measuring tape last time and so she was going to measure this this time.

now if we think of the economics of all this.
the round trips of over 50miles a visit and the petrol costs of this, not to mention how many she could be visiting in her own catchment area and not travelling to another would cost for the risers themselves and more besides.
I am not impressed
but the hse decides because they are aggrieved with me for winning my bath back when they wanted to reconstruct my own home for their economic cost cutting ideas and failed, they were going to make it less easy for me to ask to see an OT or even visit one.
so they do this next.
but this too is not even cost effective, its laughable in its expense due to pettiness and nothing else.

the poor lady then had to hear my despair, cos i just broke down.
the hse has that effect on me.
i asked what hope i had of getting the famous wheelchair if they rejected my wish for risers to the sofa to get me off of it?

we then had a question and answer session about the wheelchair.
i refused an assessment but this was looking very like one.
'no no just wanted to chat to you about this.'
that's an assessment.
i have had five already and this now is a sixth.

she seemed not to be aware that my neurologist had asked the hse to sort the issues of a proper wheelchair for me.
she hadn't seen the letters he had sent.
nor did she seem to understand who he was or what his name was.

she then asked me for permission to speak with my GP to find out more about my conditions.
well that's all in my files going back like and i have been sick for a long time.
the GP is relatively new and i hardly see him so what more can he tell her.
well she wanted to know about my medication.
what has that got to do with it.
was it because i was cracking up and heaving with bawling tears and maybe she wanted to see if i was on anti-depressants and so can call this a nutcase here.
i read her mind instantly and said by the way i am very very depressed but it wont be anti-D's that can cure this.  it could be a better service, a kinder hse and a wheelchair.

i asked her to leave because the crying was now uncontrollable and her very presence was reminding me of the hatred i felt for the austerity measures the way they treat you and the poor little grey haired lady bottles on out and left me in a heap.
she to drive back to wicklow over 30 miles away and me to lie down on the sofa.

its no wonder the sick and disabled do not cry out and are heard.
because they have no say, they can effect no change in their lives at the local levels and so they do not bother.

its all at the highest levels now.  the gang of four really.  the minister for health who has decimated the health service and then the taoiseach and tanaiste and finally the minister with special responsibility for disability.
but after that you cannot get the word in edge ways.

remarking to another after a further discussion on yesterday i told her, sure this is called 'a dictatorship' this isn't democracy at all!

its Haiti all over, its the hated Cuba, its Che Guevara and everyone hated all this.
but no Ireland is lauded as the good little country of Europe.
we are no dictators.  we may not be, but someone is and its at a higher level than little Ireland, its at the core of Bonn and not bahola.

Wednesday, November 13, 2013

Running tigers, running wild and meeting the HSE - today!

it was an early start.
i woke long before 6am with extreme pain in my arms, my elbows, wrists and hands.
I let the chihuahuas out for a piddle.

I thought of the day ahead.
All i had to do.

Most of it regarding health and housing.

I am to meet a HSE official.

when my twin spoke at a social work conference as a group of enthusiastic health workers gathered to change the ethos of what it means to be in the Health Care System.
Most of them of course were social workers.
they were kind, intelligent and put it to us straight.
they Socked it.

A lecturer for Liverpool University told us clearly and plainly that there was NO NEED for the austerity measures now taking place.

How he explained it was through statistical analysis of both Ireland, the UK and the EU>

It has to be said, i was convinced.

We do have the money to spend on HEALTH but Europe, possibly Angel Merkel has decided where money should go and how it should get there.
it should go to maybe arms, money deposits and storing it.
but not spending it on Health.
Your health and mine.

so it is too expensive for a powered wheelchair for a sick person.
it is seemingly not.

the money give to health spending is going down all the time.
i have to wonder why?
is it so that after your good explosive healthy young life of economic productivity to your country then you should bail out by government decree of euthanasia and you are no more worth it than a piece of dirt.
the way you die depends on yourself, your family and of course the health service of the day.
it will be by decree and not by personal choice.

you will surely be 'outted' if you get sick or disabled.
you are not worth the money they spend on you.
we are as Hitler had said 'the money eaters.'

We have a growing fascism arising now from the ashes.
as more and more vulnerable and poor people rebel against austerity, start blaming the person in the wheelchair who has got the social housing unit.
the Pakistani who manages to do well in a small local supermarket.
the Filipinos who work our hospital and are resented by the local nurses who understand that they are 'taking our jobs'
all this causing a rising of anger and its all caused by the division of wealth.

when we run a country based on money alone we have a dangerous policy of causing people to forget that they are actually - human.

and to be human is to retain another part of their being.
the soul.
it isn't much use to anyone if a single person accrues money for paying taxes and spending on themselves but then forgets all else.
they too will be unhappy for they too will find that the ingredient most wanted is and wait for
Love cannot be bought.
but we had been told this since children.
it simply cannot.

we have to unit in a bond with another.
we have also to give and to share.
and we have to use the term in its fullest meaning.
we have to Love enough to care enough to forgive, forget and to embrace.

I was invited to meet a little man born to my adored 'Irish Wheelchair Assoc. helper Magda, whom i adore.
remember too, that when you fall into the heap of despair, illness or tragedy that the only thing, the only ideal that will lift you out of it is another looking you in the eye and making that statement that they will be there for you as long as you need them.
both then receive.
one receives strength to try and regain his or her feet and the other possibly gets all the gains, for they then feel that not only have they helped, but they feel a better human being and can move on and forward with immense sort of joy and pride.

i woke at 6 in pain.  for yesterday i dug for Ireland.
belting out pain and anguish on my garden and creating i hope a masterpiece.
i use a mattock i think its called.  a big heavy thing.
whacking wood, whacked hardened soil.
whacking and squishing up my lips in effort, still dressed in my jammies and with my wrists and ankles braced up.
it was not that useful to me, all the strapping.
i remained in agony last night, from the neck down.
the arms, the muscles screaming.
the elbows and wrists, screaming.
the palms of my hands hurting and on fire, so much so that i could hardly hold a cup.
i have muscle wasting and very visible muscle wasting.
i should not be whacking anything.
the day i saw how much the muscles had gone down was a shock.  taken a year ago, and the muscles have wasted further.
but i was in pain.
thinking of the tiger who came back to meet and embrace those who took him out of a Harold's, holdall i cried.
It was the love you see.
a tiger cannot offer anything to a human in terms of economic improvement, indeed he is dependent and gives no services back to the giver other than, yep, love.
he didn't forget.
you do not forget love.

meeting my newly born great niece, she is beautiful.
I am thinking of my family but most of all the trauma of the years just past i wake thinking of the HSE.
again, yet again it was the HSE.
i woke to the tune of the distaste in my mouth of the hse and the depression of knowing that i meet one of them today.

None by the way have ever been anything but nice to me.
but they have er, budgetary constraints.
the worker on the ground has to deliver me news of how the austerity has made them reign in their services and cause us misery.
it cannot be nice for them.
but certainly as an Irish person i have no where to protest because no one will really listen will they.
i need a powered chair, and a proper one, a good one and a comfortable one.
we have to fight for this my friends and having given back a scooter to try and appease the gods of management who require the evidence of their cost cutting plan i await the return of kindness as my gesture meant one thing only.
i cannot take the HSE and their present tactics any longer.
i need a meeting of minds that i will, be cared for and 'well'
that i will be considered 'human' and 'cared for well.'
Look into the eyes of a sad horse that is rocking in its stable out of boredom and a need to run free.  we do this to beasts that can be manipulated to serve our needs, but this is also the same as that which we do to others, we crucify without the need to.
Can I be provided for at the end of my life.

not fearing them, hating them and dreaming of them through trauma.
not going to therapy and working through trauma instigated by the hse.
all the trauma i am presently trying to come to terms with in therapy is the trauma of the loss of family and what the HSE has done to me.
both of these are the cause of pain for me.

its the cause of me banging dirt with arms that should not, can not and are unable for hitting the ground with mattocks.

the reason being i am starved of kindness and love.
i am a dislocated individual without another.
A rare visit from a great nephew and niece gives me the space to 'look outside the box' and enjoy an encounter i will remember for a very long time.
there is no one.
no one.
there isn't the person who will pick up the phone and ask how i am.
it never happens.

tell me please if you read this post how could you live through a life with absolutely no one in it?
well i have.
all of it.
decades of it.
i had for love a dog.
the tiger in my life.
but i am looking for the human tiger.
the one who sees through all of this.
who will come forward and reward another for the ability of the other to offer more than money.
this is my tiger, she gives to me, and she gives to many.  She is my love giver and can offer nothing but this to me, the state or to another human being.

i have no money.
but can and would and could offer far more to humanity than money.

Lets say I am behind the bushes in Africa waiting for the tiger to come and find me, recognise me as the person who saved them as a tiny animal in a cage and will come out and greet and meet and pad the face with huge paws.

if you read this and are a HSE official recognise the words i write and what you have done to me.
If you are a government official recognise that its not only me you have injured by your policies of cost cutting, cost savings and austerity measures.
if it is family, recognise that i need you.
I can and will 'lift up' but can you return the gift of caring to your older relative?'
The tiger has come out of the woods, found you hiding away, shut away, blind and old, she gives what she can and this is called my friends - LOVE.
if it is friends, and others remember if you are down on your knees in despair, you will know only too well that you would look to the stronger to help you gain strength.

i am down on my knees looking for the stronger to help me gain strength.

Friday, November 8, 2013

Salsa, Hula Jazzy and JiVE plus troika

it is such a catchy headline eh?

Well jazz around the troika, lets Hula.

do i really know these sort of steps?
whoever figured the names of the next state of art wheelchairs, thought well about all this.

these dances are fast, sexy and fun.
and the appliances who have names of these dances are in fact wheelchairs. the people...wheelchairs.

and i mean it.

these are no clapped out whiners, that barely make the tiny slope in a full car park after volunteering to collect for those in wheelchairs receiving PA's.

whine, 'you can do it, c'mon, you can do it.'  giggle giggle, but with a bit of fear.
'er, can it.'

and the wheel no fell off, this time.
and the control panel of my twins, no fell off....this time.

knobs, buttons, whirrs and blinks, crash and bang and bailouts.

the wheelchairs.
clapped, out.
so too the country, bailed out to the troika, the banks and the eggits in my country who stood idly by and let it happen.

Yes, i say.  Lauded were we who did this magnificent deed.
Oh lauded in the EU federation of nations.

but who will see fall out.
we do, in our clapped machines, the euthanasia that now is even contemplated, and carried out without knowledge across the globe, once decried by civilized nations less than a century ago.
people were hung, shot and imprisoned for the schemes we build monuments for, lest not we forget.
-the gas chambers.
but what is  happening now is only a sophisticated version and done by stealth.
we kill off many every year, in every country and no one goes to jail.

we do this because the world does now think that disabled people, old, sick, learning disabled and mentally ill, have any part in a thriving economic drive to produce, money and to have lifestyles that are burning up the atmosphere so fast we wont have a world to even exist in in a couple of centuries.

so we make hell and pay hugely for debt and we kill in the name of 'money eaters, rule not OK.'

How many of you had enough bile, corrupt minds, power, greed and ability to take out 'your own country'  that is, the one you lived in, had fun in, created in and produced the next generation in?

did you personally have it in the bank to deal and wheel away the country.
to play Russian roulette to such a degree we lost.
bang bang out.
we are dead.
I do not believe we shall recover.

economically we will get back possibly to where we were when we became independent.
we have struggled this far for nothing, absolutely nothing.
your mother and father worked for nothing.
we burnt the country on the face of their graves.

we sold out.

meanwhile we face crisis in Ireland.
our biggest being in health.
not wealth.
wealth is nothing, has no meaning when you cannot sit up in bed, cannot sleep from pain, cannot walk for a myriad of reasons, cannot travel to offer your gifts to the economic table as in work for the bread on your table.
if you sell a country down the Swanee as we have done, we are all going now to be a bloody sick country.
this is fact and proven.
we have not enough doctors, nurses, clinics, specialities, community care, mental health care (they are the bottom of the heap, heh come get em.).  seriously though, we are in effect putting our most vulnerable through hell on earth.
to live a hell on earth.
did the parents of vulnerable people not feel happy once to have a child, happy to feed and educate and happy enough to love that child.
not any more, the powers are thinking fast and hard to rid your child, if it is different, useless and disabled.
NO ONE is different.
people are just people.
we are all different if we look at those closest to us.
who are we to say that a sick person cannot live as well as another?
we all acting the gods now.

who said that because i personally am sick and disabled that i do not deserve life itself.
I do not deserve to be in community.
to enjoy fashion, food, nature, literature, arts and creativity.
to enjoy what i can offer to the whole spectrum of colours that add up to the world of enrichment.
who said i had nothing at all to offer so should not live and will not live and then decide to make the very life i do have one of misery, disadvantage,  out in the cold and frightened.
worried about medications, therapies, devices and aids i need, my twin needs and many need.

who bothers enough anyway that we exist?

These questions are very raw but have to be faced.
We have to face these because if we do not, maybe the next generation of artists, will be designing the monument to the terrors of troika, killing vulnerable and sick, all because of money.

A generation will come who will reflect on all this and be horrified that any human being can do this to another.

So lets join the jive.
i mean jive.

did you see the Quickie Jive.
many do not think of the bodily comfort of movement, its so automatic.
do you think of how your back should be supported, how the legs should be placed and when and how to hold the head up and still be able to create the movement into the world.

some have to think of this.
we think Quickie because life is so short.

60yrs is the age we start prepping the funeral, the prayers over the wilted body.
60yr olds start to think of what is best of their lives to live behind, and what is best to burn out.
60yr olds start to think that life now is for living and fun, because there is so little of it left.
60yr olds prepare for that day that they will be forced out of their homes to the boxes and cages we call lyrically the 'home for the elderly.'
In my terms these should be 'the cages for the forgotten, the useless and the ones waiting to die.'
this is not a fashionable subject but also not a fashionable state of affairs.
I personally want to stay active.
but it will mean an ability to move and move well.
pain is a killer to the psyche and the soul.
when you have it you will understand.
but forced pain, as in FORCED pain, because you cannot afford, and others will not provide a simple but expensive devise, which would mean the difference between sitting at home all day and every day to getting out and about and being with the people.
a chair, electrified for living, not for death.

when twins need such an item it is unusual .
it isn't usual for such to happen two individuals at the end of their lives, when they are so close.
because it seems rare that this should happen.
it is rare and we are just that.

but you would think that we are just simply not worth it.
if we were worth it, two years of battle should have provided something better than bangers from hell.
who lose body parts and are failing faster than those who sit on them.
we need better, deserve better but how.

i don't mind saying it.
i am desperate.
i am cynical of living, the world, its ethos and its ability to care.
certainly two years living now in a personal turmoil of dynamic i never imagined would happen at this age.

but we are a kindly nation still.
 we all do realise our country is ONE OF the best to live in in at least Europe, because of our humour and ability to care, (er, am i right here)?

so we have to hope and pray somehow.

but time is running out for me and my twin.
we have looked at all the options.
we have tried.
but still two years later we are riding the waves in bangers.
to try, to implore a bit better or a bit more.
i now put this on a blog and wonder if it wise, good bad or shall everyone just be as indifferent as we have pretty much experienced in the circles we most closely mingle in.