the meaning of 'retirement!'

i dont think its this anyway!
no way retiring, no way sitting chewing the cud.
no way am i having neat little coffee mornings or a chat over a mug of tea.
no way am i watching the youngster run around me as i sit plucking daisies.
Certainly i never thought 'retirement' would be this!
Retiring from what i may ask as it continues the same as it always was.

shrieking through disability issues and them that control 'us.'
Them that does control determines my retirement preoccupations.
it isnt about writing the famous memoir of an 'adventure'
its about living the life of the adventure i rather not live OUT, i could do without.

my dream of such things as retirement was Freedom from strife, ill health, a certain level of contentment and peace.
EASE i think would be the tiny word i would use for the wrinkled prune sitting on the decking wondering about the marvels of the world.

I am at Disease with disease and the state of the nation and them people who control the lives of so many of us who are disabled.

we have one holy mess.
remember too, one little feckin nation at the edge of nowhere isnt setting the agenda against the disabled.
this is a worldwide agenda, the pathwaying out of the unnecessary disabled, the money eaters.
the nuisance and the misfortune of the able bodied to have us in their midst.

we have as a century, set the tone for development of our youth, to that of greedy, selfish little emperors and we have set the tone for development as we progress in science and so keep people alive longer, with better food, understanding and the interventions into preventable disease.

what we cannot do is cure all, so some unpreventable diseased people remain unaccounted for in this sort of spectrum of considered acceptability.
we become the burdens of the unnessary so that the able bodied can get on with their lives unfettered.
but we are chained in bondage to the lack of kindness which gives us no freedom whatsover in movement, thought or effecting change for the good of self or that of others or the nation.

Abled bodied individuals have caused a mighty depression amongst us.
that of fear for our lives, the next time in A&E and of costs of living that to us is the cost of the scratch basics of living.
we are not living because of the squeeze out and abandonment both in terms of ability to do anything as no money to fund activity and the inability to do anything about it all.

we in this little country have such dreadful organisations such as the HSE and its a known fact within disabled circles if a disabled person stands up to the hse our life would be made hell.

I am living proof.
they are making my life hell.
we have an obsurd situation here now where i have managed to save the bath as part of my  need in my home when the hse wanted and demanded i have a wetroom.
i accepted the same grant funding as twin who wasnt required to have this change made.
and so now we are equal in the fact we both have a bath, but now i hear the grant has been reduced!
of course no one told me it was being done, the builder did!
so i await to see if this is actually true.
the hell on earth they have put me through for a year and now they are turning the knife, i win on the bath and they determined that i will be ill at ease as i am diseased and they say how it should be.
well, i guess i may have further to fight this lot.
also to fight a dreadful thing they have said about me yet done the exact opposite to what they recommend.
they can condemn me and yet they do something not recommended.
its just not possible in this instance to do two things at once.
just not at all possible, but defo possible for the hse and the hse will let this be the impasse for that is what they do.
they do not do 'conflict resolution' at all.
they may capitulate but decide to try 'get you after all' in the end./
its like a battle of wits.
i consider them people the nits of society the bugs that bug me and many disabled people giving us an incurable rash so we bleed.
i dont like what the minister for health Dr. Rielly and Kathleen Lynch is doing to the good disabled of my small country.
she said she has been agonising over the goverments decision to slash mobiltiy grants, agonising?
i doubt it.
she will sleep well tonight and be fed well, she also can afford private health insurance and wont end in any agony at all.
Kathleen Lynch, your words could not have been more comical.
we are agonising over what you are dong to our life, all of us who are disabled in ireland are anxiety riddled and petrified for the next cut and the next and the next after that.
can i please please be left in peace away from the hse?
is that possible?
nah.

Being bullied - anti-bullying

isnt it dreadful for a person with a severe disability and who is ill and dying to feel she is being bullied.
Even anihilated by a very new set of health workers in a very new environment for her?
What do people say about bullying?
Does the reams of anti-bullying advise out there in the health service advise literature not apply then to the sick and disabled?

I have just viewed the HSE websites in Ireland.
set up to put down guide lines on bullying in the work place and what you should do if you are being bullied.

What though if you are a victim of bullying BY the  HSE and not only by one HSE but by a collective!

there is not one sycable that gives guidelines for service users who are at the coal face of vulnerability and what they should do if they find themselves having profound statements against their character and personality being made - to which she feels defenseless in clearing her good name?
there is not one statement that bullying against disabled people will not be tolerated, in fact if a person within the hSE feels aggrieved by a disabled woman for being forthright and intelligent in standing up to a member of the HSE then the HSE personnel will work a cartel to protect the common good and common good name of the HSE.
the person with a disability will have rules and regulations made for her, to constrain her, contain her and bar her from access to people she feels might give her a chance.

How can a 60yr old be such a treat that she is allocated a male health worker - now listen to why =- for health and safety reasons of the HSE officials.
to protect them in other words.
this means that a 60yr old is capable of what?
I am in a wheelchair!
i have a muscle wasting disorder.
i raised my voice under distress and exhaustion with a condition called Asperger and yet i am allotted the title of horror by the HSE our wonderful health service executive which is being wound down, thankfully.

credibility of the HSe has been completely and utterly squashed in the face of over four years now of HSE over involvement in my life, which has led me to be in an alien county away from all i know, against the advice of every single consultant i saw who said that i would not deal well with change and to help me stay near all i had known.

they did not.  they failed a sick and disabled woman and now have labelled her, and labelled her with no justification whatsoever.

I want my name cleared, i have done very good work myself for many vulnerable people.
i feel i am being bullied, and as the internet is becoming the vehicle for expression which is at least free, i state i am being bullied by our HSE and no one absolutely no one is standing up to the bullies, well my twin is.
we will not be put upon in this manner.

after a vile meeting with a hse official both my twin and i wanted to emigrate out of ireland we should have done this when we had the chance.

a petty, nasty little country going no where fast which needs to gain knowledge, become modern, behave in a manner that befits modern thinking and stop the attitude and stigma that Ireland is know  for through the magdelene laundries, the clergy abuse of vulnerable woman and the atrocious record we have of dealing with learning disabled, disabled and the elderly.

i state that we have a long way to go and many sectors of irish society need the voice that i hope i will offer for them, on behalf of them.
for being a victim of state, so called care of the sick.
i shall now hope to garnish support and advice from other sources after what transpired today.

who in god's name can live with a label  of libel and slander with no avenues of defense.

i have been hung drawn and quartered by the hse and i am going to fight for my name to be cleared.

I do not know, i do not know, i want to know!

another day of medicine....
.....i want to know firstly, will it be any other way at all, at all?

there was some very good news my friends.  I received the best pair of shoes i have ever had from the one and only HSE in Ireland.
After an Online Journal.ie article, about my disastrous pair i was wearing for years after funding here stopped.

the prompted action as it was bound to.
i got shoes!
my winter shoes have come in spring and i walked the walk in ice and snow, with holes in my shoes, but that too was something i explained to the world.

as a result of withdrawn funding for adequate shoes for deformed feet, the lack thereof saw that my right leg has been irreversibly damaged now and will always cause extreme pain.

this should not have happened.

Today too i received an extraordinary phone call from the HSE telling me that i am being allocated a Male Occupational Therapist, even further away from me than here and to where i can never hope to reach if i need to see him.

But the plot thickens...it is a PRIVATE Occupational Therapist, and i guess i dont pay as i am a public patient so now the HSE is paying for this?
Why?

the plot thickens even further as the local area Home help services is being privatized too and given over to a Private company to run.

this will mean i feel, worse service as it will not be overseen by the state but will have money flung at it and be a 'one man band' and the state will not be responsible if anything goes wrong, the state too will not be in charge and the state will take no part in making sure very vulnerable people are provided good and appropiate care.  Remember Private Companies exist to make MOney  not altruistic or care driven AT ALL>

Like Horse meat, if the Private sector can get away with horse dressed up as Beef, then the hOme help services can be unqualified, unregulated and dressed up as a caring professional service moyah i say to that!

we will be getting HOrse, or donkey and there is a lot of that around these parts!

Let me tell you about an 'incident' not of a curious dog in the night, or is that right?

well, yes, i was curious and broke and knowingly getting even more broke so i took the electric wheelchair into Dublin Fair City on the DART, Dublin Area Rapid Transport system!
off i get at Pearse Station or is that Pearse St?
and tootle along to the tooth fairies at the Dental Hospital, then i nervously and courageously travelled badly to O'Connell Street.
I crossed over cobbles, victorian pavings and concrete block pathways.  the latter being the best i have to say.
we have atrocious roads for anyone with a disability.
At my second destination i had hearing aids fixed (I have between both ears 35% left.) and i trotted with trottle along to the cheap shops of Dublin.  the ones all the good old dubllners have used for generations.
At Guineys i bought three cushion covers and suddenly realised i had a split front tyre to the electric wheelchair.
there is no relationship between the zipped cushion covers and the ripped wheel, believe me.

now i am in trouble.
along came Aisling, from Guineys who helps my limping wheelchair to the back streets and a taxi rank that has no taxi for a disabled woman and a banjaxed electric wheelchair.
that my friends caused a wait of over half an hour and a bill for 50e.
the HSe scoffed at me when i asked for re-embursement, almost sneered.
i was told to bring the thing home.
i did and left it at twins, it was hers and hers was a better one (i now declare it not fit for purpose).
today after getting my disab pension i was driving off, and got a phone call.  i took it stationary at the petrol station.
i was asked to bring the thing back down to the health centre.
remarking that i was now off to the far reaches of the other side of nowhere, a place i get lost in every time, to pick up my special shoes, (see start of blog). i have done this trip at least four times.  to be asked to load a busted electric wheelchair into my van and back down to the health centre was a tad much.
i am dealing with having my house torn apart through an adaptation grant and no one to help me move my belongings out of the firing line of chain saws and dust and muck which i did last night and early this morning.
to be doing all this!
i reminded the lady in question that ....i am supposed to be a very sick woman!
I am !
Oh well, as i said as i began....my life is forever more all about medicine and the Irish Health Service as its being provided during a recession and economic busted wheels going no where fast.

To Know or not to Know - that is the question

this is really really personal......
.........very shortly after years..........we, the twins, that is Awynah and her other, Raging Wheels, will either be told or be given information that could be devastating or revealing...it could pave the way for treatment, cure, care provision and lessen the confusion.
Years of it.
Or.....worse, we will be lift in a holy god of a limbo...we will never know other than surmise that our demise has been due to Congenital Rubella Syndrome.

If this is the case, in holy Ireland, what will become of us?
a very very good question to which there are no answers and this for sure will be devastating, as there is no treatment, no cure, no care providing and it will cause SPIN.

We will not be confused.  We will be annihilated so badly in psyche that we will be confined to the inevitable...we will be...waiting to die, in an uncompromising country taking cues from the NHS to pathway us the HSE way.
It won't be pretty.

My twin the Doctor is now on a plane and will be meeting a great doctor of international repute, namely Professor Michael Hanna of Queens Square London.
both of us have had slivers of body parts peeked at under microscopes, blood drawn and pondered, needles piercing and also circling machine which hum and drum around the cranium as its shot with radium, all for the purpose of finding the Whys.
Why can we not walk.
Why do we have generalised dystonia and why do we have a degenerative process involving the brain?
why does one have crohns disease and sjogrens syndrome and the other cancer, treated, but also raging infections to which no one can determine the cause.
Why do both have a shot thyroid, broken limbs as in wasting muscles and painful joints and bombed with morphine and Lyrica.
Why are we going blind and deafness is worse to such a degree that only a sliver of that is left intact and the rest is on the glass somewhere but not in the inner ear for sure.
we are slowly being taken out and asunder and in the meantime we have the unpredictability of the medical confraternity as it literally 'choses' who to care for, in this modern world of sophistication and all things, 'scientific'
Lets not pretend where the world is heading my friends.
we are heading into a shortened lifespan, years as perceived imbeciles and a blast of youth and young men and women, after that its downhill rapidly so by 50 the path is drawn, you are down it one way or the other.
the family will decide along with the state.
you retire, you hand everything over lock stock and barrel to the next generation, you go halfway housing and pathway outtings.
you are sheltered away in the sheltered accommodation and you are here 'for the best', ask though 'whose best is that!?
yours or mine?
Your son or daughter will quickly determine your fate and there will be no going back, my friend.
The one in charge will be an under 40 who will corral you into which ever way he/she wishes to put you, so that she/he may have that blast that is instant, intense, exciting and absorbing.
then he/she will get something!
the lurgy.
he/she will be like me, frightened, waiting, alone and hopeless.
Feel that loneliness and the fear.
Feel the helplessness in lack of choices, lack of services, and lack of family.
FEEL it now, for if you do FEEL it can you feel it so much that you say, Awnyah, what do you think you are saying?  do you realize that you have told us the next generation that we will be heartless and gutless, and inhumane and selfish to do this to our own?
Yes, Awnyah is saying that far too quickly the choices of the young is to put away the old, to decide on vast and gross ways of elimination as does the state in its lack of now, hippocratic oath.  None have to recite this you know, and so it leaves medicine wide open to abuse.
my dear twin sister, with the wooden spoons and doctorate, already demoralized by an inept health system, and myself, who never had a good image of the health system to start with, waiting and wondering, will health systems rise to the bait and give us a better understanding and a better type of end
No one can actually put off the inevitable, but others do decide, actually, how good the end will be and how it will be spend and where.
it isnt Dr. Raging Wheels nor is it Awnyah, who says this today.

Let there be no misUnderstanding

perception, interpretation, assumptions, or concepts.
words, all very very loaded indeed.

but i have one word today - there is no misunderstanding about what has happened me with our wonderful HSE.

the battle, Oh mother of God the battle royal with this crowd and its been one thing after another for the past year, a full year and no resolution.

well not just millions of battles actually, just two, with a few capillary entries, but to get these sorted has taken millions of by ways and cul de sacs and no roads at all!

It isn't sorted.

Not by a long mile.

Lets not forget da famous bath!
My famous bath but to the HSE its Theirs, and theirs alone, and my house, is theirs and theirs alone until after just under a year, yep, that bath firmly belongs to the owner - me, or does it?

well as soon as the battle to win this bath is over,  i had the clip board bearing woman asking me for her signature to make sure i never asked for anything more of the HSE when it came to bathrooms.  Not on your  nelly are they getting a signature of mine after all the grief they put me in.
but still the bath is mine and here to stay, thanks be to God above.
but when the Occupational Therapist uses the builder as her secretary to get him to tell me She would be here yesterday to work up the dimensions of the bathroom space, we find that the HSE still do not get it, that is who actually owns this house!
Not the builder, not the HSE but me here and it was to Me or I here, she should have asked was it ok to come yesterday, was i doing anything else or could we make this arrangement to come er, yesterday?
instead of telling the builder to tell me she was coming so there be it.
well, i still wasn't sure, cos etiquette for me was she inform me and she didn't so i had it in mind that i didn/t know, really didn't.
when she came i was surprised and told her so.  'Well didn't you know, i told the builder to tell you i was coming!'
and when i saw her with the clipboard standing on the pavement at the end of my front garden with the builder and me at the hall door, i remarked that any chatting about my home would be done here, hey here, here is the home you are to be chatting about with ME!
they came.
and they discussed the bathroom dimensions, amongst other things.
but then the Occupational therapist turned to the builder and informed him 'John, grey tiles on the floor;  Heh? i said, 'huh, grey tiles?  NO miss OT, ann doesn't do grey tiles (she doesn't do grey or black but colour see), "well it was to hide the dirt"  i remarked' "that is my dirt, and i don't do grey and you don't do interior design you do 'health and safety etc, but not dirt and my dirt nor interior design, that's up to the owner, who is me, standing here, see?'  I think she got the message.
outside we had to discuss the ramp.
well, soon it was apparent that it was the OT and the builder discussing it while i stood by.
then after the discussing was over, i heard the OT say, 'well, John, are we happy then!?' with much glee.
I remarked as is my style, 'are we happy?' and shot daggers at the OT.
'yep, ann is happy!'
and off they went.
seething with anger at the intrusion of the HSE constantly in my life in this way i told the builder John, 'i don't like these people.'
'I think i got that message alright ann'
i was allowed to giggle then, loud and clear.

All not over with the HSE today, that is the day after the day before.

a meeting was to be held to 'resolve issues' between the HSE and myself.'
so i thought.
the meeting date was stamped and i was asked to let them know if there was anyone i would like to attend.
there was.  two individuals who cared for me in the last county and who would be able to enlighten the new area how they found me and engaged with me...character reference as this was a sort of issue down here.
I was told that these people would not be allowed attend!
so we now have the HSE again telling me, exactly as before, just telling me that no, actually the "hse won't allow that,' just like the Hse wouldn't allow me keep the bath.
I then tell the same bloody awful power hungry HSE that the meeting was officially OFF.
i wasn't going to have this consistency of disrespect and bossy and power driven maniacal behaviour of the HSE over a sickie.

when the HSE tell me and my twin that 'we have to move on' that is get over some very very dangerous statements made down here with no sanctions against the person who said it, then no, actually we do not move on.
we move on when there has been a resolution and the person brought to task for doing what she did to me, only then do 'we move on!'

the HSE still do not get it, but actually i think they do get it, they do, what they don't want to do is actually lose face, do something they should have done long ago and for which they will not do.
so, we have no meeting until the HSE fully understands the seriousness of the issues involved and until the HSE is fully committed to the process of righting the wrong doing against me and also committed to 'equality' for which they have no idea whatsoever about in any shape or form.
and only then do we have a level playing field.
the HSE must be made aware, that disabled i am and will be but in order to feel that they get respect from a sickie then they must equally show the same to me, an individual who, if it wasn't for me and many like us they would be out of a job!
that, my friends they would not like.
but what i do do like, the way is being paved to er, 'disband the HSE' because its got too big for its boots, yes, really.  far too big and too unmanageable.

I also hear that the local area home help service is being taken over by a private concern.
there are theories as to why.
i ask another, is it because the department of health will no longer be responsible, as in accountable, and as its a private concern, the wages will then be lowered as we have public sector wage agreements not the same as private sector.
i say if the private sector can offer less pay does this mean too that less paid workers who are less qualified will be asked to fill these jobs and give a less than perfect service.
i think the person to whom i made these comments to was in agreement, 'put it like that, yes.'
remember, the Department of health is over health and commercial outsourcing should never be entertained as it opens the way for abuse.
we have enough of that already.
who will watch over the private firms who work now for us, the sick and less able?
the Department of Health do not want to.
its called 'cost saving enterprise.'

oh, and the public sector are up in arms about cutting wages now we are in recessionary times. they threaten strike action.
not one disabled person had any say whatsoever in the massive cuts to our care and services in the last budget.
we had to take it on the chin and suffer, ah but not so our public servants!
they wont stand for it.

this myself is the great divide!