when a nation 'goes tired' and so does this blogger!

we are all tired.
we are all in shock.

prices and costs of living are rising through the roof.
we have increase of ESB charges and water charges introduced on same day.
prescription charges off richter for those of us who are very ill.

in fact the only thing that stays static is the pension and the social welfare, otherwise things rise.

my pension has deceased and stayed static within the past few years, decreased three times.
but nothing stays still.

when you tired too, sick too and needy of services where are they now.
what has happened health care ?

If you are in the public health system it stands still too, nothing gets better.
i am waiting for scan on my shoulders after a very bad fall many months ago, so in agony daily i attempt to make contact with my doctor, but that doesnt work.
i do not sleep because of it.

i have lost all but a stump of tooth, and its still there in my mouth and will remain so for many more months to come.
i have gum desease and yet i will only get to see a hygenist after two years without, next december.
i have just got my winter shoes, after well over six years waiting, i have deformed feet.

i dont get physiotherapy, about ten minutes tweaking a few days ago and about half hour chatting, thats my physio over for a few weeks anyway.  i would have preferred if it was ten minutes chatting and half hour manipulation and massage, but which is easier.

psychological support, again NADA and that even though i was to get some after last easter after waiting over two and a half years.

I met the psychologist once down here, and that for a team meeting and nothing further, a meeting of all my team which lasted half an hour, she scuffed at my diagnosis of asperger syndrome, even though it took many weeks going to an autism specialist a questionaire from me and a relative who knew me.  it was extremely comprehensive indeed.
so the psychologist in my new area knows me inside out eh in half hour where we were talking about all sorts of things.

the promise of a workshop for the staff of the local health centre on dealing with adults with asperger was promised it never happened and told so by the nurse.

when my wheel flew off my powered wheelchair the health service tried to tell me i had it fixed by a person unknown and nothing was wrong when contrary to this, a service rep told his mates the blasted wheel was put on with the wrong bolts and this was quite a story within the industry, yep evidently it was!
i didnt have anything altered on my chair just had things tightened so that no more flew from it.

people write anything on file, just about anything, it doesn't wash with me when a commentator who commentated on file said to me today 'you were not supposed to see that, that was confidential.'  i have to wonder, how about my confidentiality when i find this out by mistake and what i saw was shocking.
it was and defamatory to boot, half lies, economic with the truth and without qualification on the incidents named nor the circumstances surrounding my difficulties.
it doesnt matter, anything is done and said to me, over and over.
many things are denied me over and over.
i see no end to it, at all.
i am being stitched, over and over and i know it and many know it.
many see and have been along with me on this journey of hell.
its hell to be in ireland and sick.
its hell to have liars and cheats and groupies as your health care managers and service providers.
its hell to have a health service so devastated by cuts and germany that we do not have a service at all.
proven we do not have a service.

how do you correct it all and the corrupt state we live in?
i do not know.
the judicial system came in for a spanking today and deemed not fit for purpose.
so too the health system in the dail many months and even years ago, not fit for purpose.
but still more and more is not fit for purpose and in essence doesn't work, so if all doesn't work, who is there to fix it.
when germany has decided to take all our money and leave us a country denuded of our youth, our top graduates, our vibrant services, those that are left and surely to god there has to be one or two left, what then?
what is left of a country.
it wont be and isnt.
we have sold most of our assets, the politicians will be the least educated you can find as those cute enough to bail out of our sweet land have and are gone to better pastures.
we are rotting, daily, monthly and yearly.
more now sleep on the streets than ever before.
less are able to keep up.
more are emigrating.
the sick are sicker and not served and therefore only one elite is left, the rich, be they educated, which they are not, they can buy their health and their status and their lifestyle while all the rest are mere shadows of their former selves.
it doesnt really matter about our rising suicide rates because no one cares for the other anymore.
we will be left with the moo cows on green pastures and the bulls in the dail.
pretty much pleasant apart from the fact there are irish people still living here who are governed by the bulls that be.
i wish to god they would emigrate to pamploma or where ever that there bull run is and let our lot out to test their wit on the roads some place else but our boreens.
i never, ever thoght i would see the day i would say 'i hate this country of mine, hate it.'

identical twins remember how it is....

again my friends, i was trawling files to extract ten good images for an exhibition as i have been offered 'wall' to exhibit.

but in the course of my jumble which is supposed to be very un-jumbled files according to date/event/ etc et al, i found these images.

they remind me of many things.
but primarily they remind me that although these images were taken at the beginning of our decline we were proactive and loving life and feeling actually that nothing would get in the way, not even disability.

 we remained smiling and strong in a sense.
we were determined, to carry on and to cope.

before my first exit to UK 'Lupus Centre' for evaluation as to what may ail me, Ireland left me for DEAD

the director of operations at 'St. Olaf's' where the Lupus Centre is, shows me around the building where some of the Poirot episodes were made.  No, i didn't feel as good as i looked, but here you see courage.  the people here were amazing.

but then we didn't reckon on powerful forces which would bring us to our knees.
we met the hse.
after many rants, tears more rants and more complaints, begging and more tears we are still effectively embattled with the famous HSE.

it isn't our intention and nor was it ever our intention to land in this position.
that is, be sick or fight with anyone least of all a powerful body like the HSe.

but i think they ought to see us here.
they ought to see how they have brought us so far down in confidence, in self belief and also how dis empowered we feel now after all of this.

there were  very dark days and an enormous amount of physical pain, this no one saw as they didn't wish to see.

it seems strangely odd to remain positive when the situation was grim and the wheelchair off camera in this instance, ready to collapse into.  also odd that myself a sick person still had the will to dress well and try and stay positive when everyone was being so beastly back in Ireland, this taken during another visit to Prof. Graham Hughes of the Lupus Centre London UK

i wish to remind the HSE there should be a LIFE going on despite the HSE, there should be a parallel where we can actually enjoy, contribute and have some peace and joy.
what has happened the latter has been swallowed by the former right now.

i intended to create work and to do the best i could given my situation.  London again after another trip to 'the Lupus Centre' when Ireland left me for dead! 

but ialso wish to tell all, its not my intention to stay in such a hopeless situation, but also i hope for justice after all that has happened.
to take life is a crime.
to take a living person and subject her/them to misery is also the taking of a life.
denying them a right to a life is a crime.
to deny my twin sister who has done so much is a crime.

we were fighting to enjoy despite everything as my first ever hotel stay in 2008 found me too unwell to get to the hotel restaurant and i had to deal with a child's portion of chips and a burger.

christmas, same hotel, same year same health issues.

margaret and i enjoyed looking well, making the effort and attempting to enjoy christmas together although inside we may have been dying of the despair of hopelessness.

even a wish with santa at the hotel that margaret and i would see 'justice' from the Irish medical services, but we had many journeys costing a fortune to get to UK and to lead us where we are today...mito disease.  at least suspected mito disease.  VERY RARE.

we overcome so much including myself overcoming adversery but then to deny me my own personal life is also heinious after the flipping awful work i attempted to join the world after a prison of sorts in the mental health system.
ry severe deafness to become very ill and basically butchered down by the HSe.
i want to reassure you the phoenix will rise again.

i am being injected with radio-active material, this should make my brain and basel ganglia glow to determine if i have parkinsons disease.

why put me through this and have the neurologists say 'you do not have parkinsons disease you just want it'?  why over rule the specialists who read these dat scans?  why did the consultants put me through this TWICE and say the same, when each test cost the tax payer 3,000e each.

i didnt know this image was being taken, by a friend.  I have yes, generalised dystonia.

i wanted to be an Artist, i attempted to be an Artist, exhibition in Dublin Ireland

i wanted to look well, even if dying inside.

my twin too, had a life before she was butchered and slayed by the HSE

my twin sister, Dr. Margaret Kennedy had a vocation that no one should face sexual abuse by clergy, when sick she has remained floundering in a mess which is her care team and the care package she deserves after a lifetime of social care service

a difficult blog about Rolf Harris

to all i throw out these thoughts of mine.
i throw them out knowing that i can tell you i was sexually abused by a priest and know that i straddle the belief for justice and clarity.

we see today that an 84 yr old will be in prison.
he will be striped of all his honours, his life achievements, his fame and he will be wiped off the map of fame.

his wife is equally frail and she will sit at home alone in tatters.

his daughter knows certain things and she is young and will embark on life with a major sorrow and far more besides.

an 84yr old will almost surely be spat at in jail.
the lynch mob will be out in force.

he made very bad choices, he behaved disgracefully and he has to pay for it some way.

first i wish to put to you the business of retrospective crime and punishment.
we have what is called a 'statute of limitations' but evidently it is not there for war crimes or abuse.

i remind you today we have NO BANKER IN JAIL for leaving Ireland destitute with a homeless population the greatest we have ever experienced.
we have a country decimated.
the UK too is taking away the independent living for disabled people, who committed no offence but will be imprisoned.

what i feel about retrospective judgement there should be a type of this.

but we should not be baying for blood as we do with the sex offenders list.
right away i hear a lynch mob out to get me too!
but wait a while and hear me out.

what actual GOOD does this do to society to crucify an old man, his family and the next generation and those attached to his family who are innocent of any crime?

what good does it do any person who has been subjected to sexual abuse decades ago?

I was subjected to sexual abuse decades ago, and the perpetrator is free and is nearly as old as Rolf Harris, he also still wears a collar and has recently celebrated his golden anniversary.
no one told me this, but i know where he is and can look him up on the Order website, for he is there, and he has a facebook page of very young Asian ladies too!

but do i wish him in jail right now.
i don't actually.  the damage is done.
decades ago.
i got a slap of a wet fish in compo, now all gone it was so small that had everyone reeling.
but we have powerful institutions and i just didn't come lucky with this one for sure.

still do i feel strange with the judge passing sentence in such a manner?  i do.
he got his sentence and it should have been with out the vile vitriolic from the chair.
i believe this passionately for this is what separates us from animals but  now we are acting like it.

we put old men away, and crucify.
we will have lynch mobs everywhere, his family will be harassed, the home sold, they will be spat upon and all manner of things.

it has solved nothing for the victims.
they will get some compensation.
it will help some and may not help others.
it didn't make much of a difference to me, neither vindication nor help me in any great way psychologically or emotionally or give me a sense of closure or peace.
none of that.

we did something to-day that society has demanded, we lynched an old man for past sins, when there is more than enough happening in today's world.
more than enough.
we have given a token awfulness to those who perpetrate against vulnerable and the young.
but this isn't so.
it will continue with social media, with drugs and with spiked drinks and more. we have probably more of sex crime than ever before, not even the awareness of spikes changes things there.

putting an old man away will not stop the horror of so many things around the violence against women right now.
one man will never stop it by being the one to take blame for a past decade of what was a free for all, for all were complicate in a society breaking the bonds of Victorian attitude.

we will pay the price of this as we do.
and we are now paying the price on top of this of affluence and greed and social media.
all running riot through peoples lives.

i am upset for a family who has been thus treated to no good end.
because society is doing it for all the wrong reasons.
it is doing it to placate the masses and give a feel good vindicator factor.
it makes everyone feel smug that 'not in my back yard, that scum'
surprisingly it is!
its everywhere, and in all the most unsuspecting places, more sex crime takes place in the home, not by society's elite.
its everywhere.
doing this doesn't serve any justice.
it won't stop more.
it won't educate
it won't increase moral values
it will not tame the vultures.
it will create what i will call the 'hysteria of hate'  and we have that too in spades.

i have had my say on this.
we have 'played a game' of justice today.
if he was found guilty, and not put in jail but lose his assets there would have been no where in the world where he would have felt safe, he would have been spat upon.
does also incarcerating him make it better for us?
nothing was achieved in my eyes by this sham of justice.
we are riddled with present day problems akin to what was happening in Nazi Germany.
we played a card game of one man to go down for the sins of many.
one man a total gesture to the wolves that are there.
i don't like this sort of sleazy justice that can do this.

bully tactics from HSE is no way forward and bad for health

As the years go by painfully slowly and i mean the past say, six years nothing much has changed.
i am thinking of how an organisation given the total responsibility for the health budget deals with the unhealthy on its payroll and on its client list.
we absolutely KNoW bullying is bad for health!
we have, conversly many agencies putting in bootcamp educational material to prevent it, all over the place.
ON the net, in the schools and within peer groups, families etc.
Can we have a bootcamp for the HSE please?
or should we just do the BOOT bit instead, because its becoming seriously dangerous to the health of two individuals.  the twins.

When you spend your life, the past six years, actually the past fiveteen years trying to deal with the development of a rare neurodegenerative disorder and the havoc it wracks on body, mind, function and occupation that is enough to have to deal with.

when you are supposed to have a care giving team of health care providers, in Ireland its called the HSE harrassing you and bullying you almost daily then we have a serious situation.

For, not the HSE, i remind you NOT for the HSE but for the client.
the twins.
MIto is a delicate part of every cell in the body, mito is destroyed by STRESS, proven and FACT.
will someone pick up that phone and inform the HSE, who never heard of this condition yet alone bother to understand the concept of both bullying and stress on an individual.

they know for sure, that stress causes people to crack up.
they now are hell bent on seeing how well they can actually achieve this, in the case of the twins.

My twin and i are traveling back and forth to hospital and not a week goes by where we are not at the local twenty miles away or at the gp.  today it was my turn to visit st. vincent's hospital. (more on this later) and when i came home what did i get?
a letter, another obnoxious one, which had me screaming in distress and i in turn ring my twin, she had one too and she had spent all morning crying.
but yesterday it was myself at my disability advocate trying to find a way through what can only be called an entangled mess of many HSE officials digging deep, then yesterday i went on to the gp to find out about respite and finally as i left the former to go to the latter the phone rang from the company requested by the HSE to come take my powered chair away.
and again today they rang.
the terror inside me regarding the hse has me rocketing from telling them to take the useless fecker of a thing from my house, the powered chair without power,  as it is dead and the report on it is so bad that the 'engineer' has sent it to the Knacker.  but then some would say that then the HSE may say you relinguished it and refused to have it repaired, even if its irreparable.
so i hold on to it in terror not knowing where to turn.

this sort of stuff is a sure way to learn how to reinvent nazi germany!
i tell you i am on the edge.

tomorrow of course is Friday and i am in no doubt something further will happen from the HSE.

so far the HSE know that they have tried to bully me into reconfiguring a home i bought so that it conforms to their ways.
they demanded what i do with an adaptation grant, even though the grant doesn't come from the HSE but the council.
the HSE is not anything other than an advisory body with ideas but they cannot demand any citizen of this state to design the house they just bought the way they want you to.
no matter what reason even weak, and it was!
the semantics continue.
and the demands.
the contrariness as well, when they first say to one of our supporters that they are agreeable to a plan of action (said it twice in fact) but tell the twins and write to the twins something entirely different, and then when i went to the gp yesterday he said they told HIM the same as to my supporters, agreeable on a specific plan of action but they say anything but to the twins. we can do the mathematics, i can and i have dyscalculia!

you die of confusion if nothing else.

its not for the faint hearted living in Ireland.
all those on twitter and glitz mags can say what a fantastic place to live in but i doubt those who are on the dole are scurrying across the peaks to find sorrel for their veggies to conserve the planet or who can chill on twitter and twit.
the people who are at the bottom are stuck there and its anything but nice.

so Ireland isn't pleasant right now for those who are not at the top of the financial index.
you cannot even say this to those who use twitter or the Irish Times, you'd be lynched.

you'd be lynched too by family who of course are the good old stock of middle class values of the regular Fine Gael and Fianna Fail.
they think we are being looked after by the state.

its another thing too to meet a person from this estate up the dog walk who has a bad back, he who says that the japanese guy in crumlin, phsyio and other has cured him of that awful knotted back problem over these past many months, (thats not on the public medical card believe me its not) and no you cannot even say to him that your ENT appointment has been cancelled YET AGAIN when he tells you he is going to the Blackrock clinic next week to see one, and he tell you the cardiologist is way on track and all is well with his ticker.

we don't have these personnel in the gutter.
we have nought.
we have the blasted HSE public health system.

who are crucifying my twin with beligerent nastiness and abuse that beggars belief when facing two women who are slowly dying off with a rare disease that is anything but pleasant.

so when my first cousin can swim in the cold waters of ireland and enjoy it, the same age as us, if we put our tootsies in we probably keel over with seizure or heart attack i kid you not!
but i wont have that famous support of well we know, the middle class professional classes ways of acruing money to pay a bundle for the VHI.

how do you deal with them?
not my family for i rarely deal with them but we are at an uneasy peace so one has to thank god for small mercies.
how do you deal with the HSE.
that huge big institution of lying cheats who say to PAC today that they never knew about  the bank account of 13m stashed by the 'friends and supporters of CRC!
are we eggits or as my twin has said they probably didn't!

On a matter of modernity can someone also inform the HSE that the computer was invented over thirty years ago, so can they train their ceo's to use them. the poor feckers in charge of large amount of personnel within the HSE who offer hours to the sick are bent over like your man from 'A christmas Carol' not quite with the quill but certainly the pen and paper doing the work sheets and totting up what they need to pay each and every frigging worker they have! this is ludicrous and is taking that particular ceo three weeks out of every four to get through it all, and she a university trained lady!

we really do need some shaping up.
although i don't want the hse nor the hospitals nor any medical person telling me that i have an appointment on a particular day for a particular part of my anatomy on facebook or twitter (which i dont use) but i do think that sending this date out in triplicate to arrive ON THE SAME DAY is a case of two stamps too many and maybe a stuffer of an envelop too many.

its arse.

but to be serious.
the HSE are dangerous not only my words but those of the departing CEO (maybe too many pencils) of HiQUA.
ditto the same lady saying 'they don't even know how many people they are killing...the hse that is. well i do, two at least.
she also said too, wait for it.....
there is no accountability within the HSE.
ah, now we have a lady after my own heart.

heres a case in point.
ask the disability manager how you can get about as a disabled lady to do some university lecturing and he wanders into the sunrise saying he will give it some thought.
well the sun went down on another year without the response.
a complaint went in.
response - its not my job to find her a job!
no one asked him to find this lady a job she is actually well able to find her own.
but then he may have been short on the specifics of the case, because in that there briefcase he wandered into the sunset with held no paper nor pencil or pen for that matter to take notes on the interview with his client, that day the question of transport logistics was mooted.

i rest my case both on the efficiency and also the deviousness of our health service executive.
you can see i love the bunch can't you.
when they turn the last sod over my grave they may sigh a bit of relief but until then the HSE will have my twin and i to face.
and we have consistently said the same thing over and over and over again for over three years now.
and they argue and argue and argue and bitch like tigers and fish with teeth.
i dont like the lot of them.
oh, forgot the trip to the hospital, its over twenty five miles there and back.
thinking i had it for more than one job i was livid to find, wait for it...the consultant wasnt there so the ultrasound was done well, by I don't know who, and all she did was ONE muscle!  knowing i am to have indepth investigation on these muscles, how furious i was, to travel in heat there and back for a bit of gel on a shoulder and someone doing a bit of rubbing with a rounded er, pen on my shoulder muscle and that was it!  five minutes.
can they not even recognise that i am sick, too sick to travel fifty miles to have ultrasound on one muscle when a shorter distance of less than seven to the local with equal facilities can do the same.  it can, and all them three hospitals, loughlinstown, dun laoghaire and st vincents are run by the same shabang.
jesus wept.