Sunday, October 31, 2010

Simple-Being Disabled-Simply put, no way

It catches you in the gut, its a deep breath of 'oh, ah, that hurts' and it does.
You cannot escape it, wish it away, think its going to go away and yet many say it will be better....and i ask when.
Tis not a moan per se, its a wondering, like.
Since when does a human not be a human, i think i have spoken of this before.
To get personal about such things in such a way would be wrong but to get personal and say in such a way that 'family neglect' is wrong, nothing personal, but its wrong, wrong, wrong.
I had a good morning, i sang a bit, hummed a bit, gave a dog a training lesson, i divided plants and then i felt - yes, unwell.  so a short hum and sung, i was unwell again.
the eyes hurt, the body hurt, like hell unwell.
i covered the eyes with shades after dosing em with replacement tears, ditto my nose.
I fell on the bed, it was around eleven o'clock in the morning and i knew it was more or less 'it.' that is, that was my day, really.
I begged a dog walker to walk the lodger dodger of a dog wired to the moon.
I left the house soon after with the two small gentle chihuahuas.
I was taking them to a shady place, short stroll, very short, with shades and walking stick to end with a cuppa coffee at a small cafe under the autumn golden leaves and musty air and dampness and baby robins finding crumbs by your feet.
I get a coffee in a paper cup.
'Why' i ask for all the other coffee drinkers have real mugs, yep, real ones.  I sat there with the shades, the stick propped by and the chis in my arms, it was damp under foot for them, they are only wee.
I sat alone and counted my blessings.  the sight was fantastic, beautiful autumn, not too cold and quiet as quiet can be for a deaf person.
I watched on.  Not watched in.
the walkers walked by me, yet chatted with others, the other abled bodied.
there are many indicators that i am such, disabled.
my amazing feeling of being alive soon fell and felt flat.
I felt as i was 'alone, unwell, like hell'
Has a sister rang to find if i have glacoma or not as i was tested yesterday?  No'
Has anyone rung in fact.  'No.'
Will they?  'No.'
they will not.
To help another disabled person when you have limited energy reserve and brain function as you are disabled too, has caused a rift in my family.
No one likes being screamed and shouted at, but then no one likes doing so much all alone, when its making you sicker and sicker.
to settle another back in her country of origin, after forty years, on my own when i am now severely disabled is alarming.
Very.  I panicked badly at my inadeqacy to deal with a situation not much being resolved.
Then we have the 'personal situation of being shot at and near attacked.'
did the sisters report their dismay to the council?
I dont think they believed it happened.
so what happens next in the scheme of things.
we decide time up on the shared ownership.
the worse effected ill and sick person who never worked in her life, due to disability is made into the terror of the years.
worse that the horror of horrors for the season that's in it.
I am a traitor to the one i was trying to help, because i asked for help for her, she helped me in my fears and i am disowned for dislodging the person i was trying to get settled back and the person getting settled back has borne the brunt of my near 'nervous breakdown' and my depression of fear where i live. She has been more or less sold our home from under her.

It was not meant to be that fast no.
but who gets the blame for the unpredictable fast sale here?
I do.
'Well they dont really see you as disabled.' i am told.
do they not, with two life threatening conditions, using wheelchairs, mobility scooters and having autoimmune diseases coming out of my ears, deafness and dystonia and a diagnosed neurodegenerative process taking place?
but still, is it right to pick one in a bunch and attack viciously with vile wording and such.
causing such depression and anxiety and pain, when more than enough is visited upon her.
I did look up my school website today and i do not really know why but i wanted to be reassured of many things, and there it was for me.
The Society of the Holy Child Jesus.
They educated me, and all my siblings.  Their motto still remains "actions not words" and there has been total inaction.
no help of any sort.
when i read from a friend that many in america who have severely disabled children are told by social services to place them into the care for the homeless i weep, for i have a wealthy family who has suggested I go into sheltered accommodation and then when things get bad for both my twin and I it was then suggested by the wealthy family that she too, goes into the care of the aged who would be far far older and less able than either of us.
give me a break.
dont give me a paper cup, do not pass me by, let me live life well and contentedly, let me fly with the birds and for as long as i can, be independent as long as i can and put your hands and feet where your mouth is, far more useful, ACTION NOT WORDS.

Friday, October 29, 2010

Anger Management MOYAH Awnyah ha!

Yes, this is a contentious topic alright.
Anyone ever feel angry?  um?  well?  um, yes, I thought so.
Now this subject can be approached in many many ways.
Anger management is about the lowest of the low and boy does it make me angry.
'did you ever consider doing an 'anger management course?'
Not once but thrice!
"No actually, i didnt, i am angry, with great cause and to great effect and 'damn you for suggesting it, i am angry with you Grrrrrr!'
the other way to deal with it is the psychotherapeutic way:
"now lets see WHY you are angry and SEE if WE can come to terms with it and 'move on'
have you noticed a few phrases here which are the next on the ladder of contempt.
WE, have to sort MY anger and then I have to MOVE ON!
I can actually see why i am angry, and no sir, i do not think i can move on.
its like asking the survivors of clerical sexual abuse to 'forgive' and 'move on,' and funny many who are against such idiotic notions are not so against 'forgiving and moving on' when one is rightfully angry.
We think of Abuse next and how many kinds there are actually.
One is sexual which by now should be quite clear in peoples minds, God (excuse me) knows we have heard enough, and Dear Jaysus i am a survivor of that in spades, so i too know of that.
can i move on there.  Actually i can for i have to say, what is the point in the fight of not, for i am old and grey, well actually i am not grey much to my hair dressers astonishment.  i am 57 and touching 58 (next month, so dont forget that, or i shall be VERY angry indeed).
there is a different kind of abuse, that of the psyche and mind, and the emotional tossing of a person's basic personality, which has been there really since the persons time began on this dreadful planet.
When one has been reduced to pulp in the psych department by so many for so long, can you actually sort it and 'move on?'
I say no.
there are ways for me of sorting it.
Do not have anything to do with those who kill you inside.  Its pretty basic i have to say.
To do it is another matter for the people are your family and you want to feel loved by them, yeh.  ridiculous, loved by people who shred you into tiny bits and would have you for dinner if cannibalism was still allowed. (It is, if you think of the eating and eroding of the grey matter on the top and, you dont have to cook it!).
my way of dealing with them would be the silent treatment (but i am volatile and angry)!
but i intend when i get my 'forever home' to tend to nature, the 'animal people' in my life.  The chihuahuas, the birds and hopefully a Rex Rabbit which i long to have and own and love, a rescued rex rabbit by my nep, so nep if you read this, this woman who worked on Watership Down would like the black velveteen rabbit please, i will be good to it, promise!
Certainly i have the ability to be good to animals and not so hot on the human form at all, according to others, and i believe myself.
I am not that in love with any of them now.
I am searching under the bed in the tool and nail box for bolts and nails and screws, i have a period of 'time out' and i plan to pick the right screws and bolts to put the brain back into one piece, the head screwed on looking straight ahead and steady.
as for the mouth department of this part of my anatomy, i have no intention of jamming it up in wires, bolts, screws nor nails.
I aint Jesus by any stretch of the imagination and he was nailed to the cross for our sins.  so i think i will leave it to him.
I have to say i never quite understood that idea of being nailed to the cross for our sins, what does that mean and how does that effect me and the way i live?
yep another topic for another day.

Tuesday, October 26, 2010

I watch a CRIME and an attempted citizens arrest.

I sat in my adapted van.
The twin went for some milk inside the small shop.
I am a people watcher and thus i saw - people.
One was a young man, hummm...about 20ish or a bit more.
Flowing locks of brownish hair (one must remember the details in a crime).
I saw the 'lad' hasten furtively away from the store, alas the owner stopped him.
As i watched the 'citizen's arrest' of the three can cola drinks nicker I am bemused by the criminal's stance.
"And what have i done?' he gestures with hands outstretched, (one holding one of the cans),
The owner now has a pencil and paper and is taking details, gesturing to second in command waiting at the entrance to the shop.
the criminal is downcast and woebegone.
the beautiful brown locks flow and flash as the head is shaken to and fro.
the incident has brought amusement to the shopkeeper by the door, who beckons to another inside to come and see.
these were chuckles of chuspah (well, however that is spelt), and i join in.
the anticipation as to where this is all going....
I seem to be there a good deal of time....
I also glimpse inside as my twin talks to one of the smiling guys.  'Yep, he took them cans ok'
"And what is gonna happen?" i can almost hear my twin ask, but she too is grinning.
As i watch my brain whirls in all sorts of ways.
"this guy will be grand in the world."
and then i ask "why"

He has spirit, he is intelligent like most shrewd thieves but in this case it will serve him well for his quickness of thinking, his cognitive skills are certainly not depleted and he looks a grand healthy lad.
I marvelled at his ingenuity and wonder who on earth taught him this, that is the art of nicking.

the Man with the notebook and pencil turned away to his colleague and with a dart, dash and flash, the young man saw his opportunity and legged it.
this is a guy without any heart problem for sure, and as quick as a whippet he was out of sight.
in his clutches were the cans of cola and his rucksack.
This is a man, with knowledge of the world.
The owner shrugged his shoulders and walked grim faced to his shop, but suddenly a wicked smile embraced his face, 'what a lad, there eh?' was the question of the day.
This can whipper is a young man with Downes Syndrome!

Wednesday, October 20, 2010

Oh boy i felt a BLOG!

yes, i was waiting for the muse to stir and it stirred and pretty much the stirring went around in circles and pretty much did the circle a few times over.
Two major things started this brain reactivating - the first being the Emperor spoke last night on the nine o news, we have to cut one BILLION Euro from the health budget.
this will no doubt be a 'slash and burn' there is not the mindset to do so in an intelligent fashion.
the brain moved fast when i too was in friggin agony, not being able to move, so a bit of googling was done.
Should one google, internet trawl to find the answer to declining health?
Yes, and why?
if you search well and do not go for the ridiculous 'off the wall' sites you will find living people talk of similar ills and have some solutions.
one kind of pain all  medics throw up their arms in complete mystery is the one i am experiencing now.
it is supposed to in fact, be related to Primary Sjogrens which i have, and indeed a lot of Central Nervous System involvement and complete body inflammation.
what i found was accurate, it didn't help the pain, just that one doesn't believe the 'thrower upper of arms' and that mystic face facing you.
autoimmune disease cannot be cured and little helped as its the body attacking its own tissue.
Now, in the trawl for the Holy Grail, i discovered other information all fascinating.
well, I was drawn to the psychology side next and some of the medical sites.
Woa, the brain has sure been analyzed in a weird way, all the personality and psychological traits have been catagorized and put into the mental disorder and pathologically ill severe, mild and very mild.
there are more illness and other for a tiny part of the human anatomy than any other part, it seems.
what more, its basically all here-say.
when they respond that they do not know if such and such is genetic or environmental, then WE know they DONT KNOW, so do you actually believe a hypothetical analysis?
I do not.
Lets look at the passage of get worse or you get better...that is what disease means eh?
well with mental illnesses or stay the same and there is ...basically, no recovery.
What that tells me is, this is completely outside the doctors remit of the doctors oath, to cure and ease etc.
You cannot do anything to a personality, be it so called disorganized, delusional, narcissistic, borderline (thats a great one, anyone ever read this one)?
You cannot do anything to a person who has so called schizophrenia or endogenous depression (thats also a good one, usually means that the doctors have tried to cure by pills, failed so say its a brain dysfunction rather than what it is, a reactive depression to circumstances).  they hate being wrong, they hate not being able to sort out a brain.
Do you run a mile from certain people once you hear wording like BPD or depressive?
Do you run a mile from the narcissistic and psychopath.
of the former, No, of the later, i would as fast as i could.
Why? the Former has empathy with their world and other people, the latter do NOT!
Not because they are intrinsically bad but because due to the human side of the working brain, they can cause others to feel, er Shite.

Well i did the stirring, did it get hot or did it go cold, it went very cold indeed, as in the detective investigation was indeed 'a cold case' and stuck in the folders of the moldering many in their folders.
these shall be analyzed in the universities as part of analyical training for undergraduates, who then learn the art of investigation, but usually it will all run out cold, and a pill will be proffered instead of er, medicine.
well thats my feelings (yes, i do retain these, thank God),
Basically leave a persons personality alone, go with the ones that do not lash out to destroy and stay with the more benign type, with that you cannot go wrong.
Am i learning fast...ummm...debatable.

Saturday, October 16, 2010

Imagine there no people, imagine

It would be a bare place, echoing to sounds of no child nor laughing mama nor the grandmama.
there would be no joy in the sound of the chirping of birds, the bubbling of waters deep.
No chuckle at the baby lambs nor the awkward knobbly foal.
there is no joy, in the heart and soul of a man without a man.
Imagine if there were no people, but imagine if there was only one?
ONe, to love, to cherish, care and love again.
Tis good.  Tis bad.
Does anyone see behind the specs of a plucky one?
Does anyone actually know who is at the end of a  minutes walk to the grasses waving in the breeze.
the lavenders now placed to line the porch.
It doesn't seem so.
Days pass, as days do.  Tonight we have a half moon, the buttery smudgy clouds drift slowly over and below.
below the moon, is an 18ft high wall and below that again is a small yard, a beautiful yard of greens and other.
within the walls beyond that are two sleeping white dogs, or hardly dogs to some.
to one, they are the soul companions.
the ones who share, unconditionally the caress of the ONE, who is alone.
When she lies in the dimness because Light hurts, in the stillness of no sound because sound hurts and on the softest materials she could find, because her skin hurts, she feels that silence in her red hot surrounding of the present colour.
The Soul hurts bad.
Who knows of me and who can ever see me?
When will another soul walk up that one minute avenue, because they want to?
they want to meet and greet and sup with the one who tries.
They most of all want to hug her through love not pity.
When one shuts the door again she knows so much.
that her family have not only used her but abused her, her family have suffered yes, but who in life doesn't?
But what family picks the one, and you are the chosen, to be beaten down so badly, even at the old age i am after a life of beaten down.
who in a family would leave another so alone without the love she yearns?
and who in a family would leave another alone with her only soulmate who is also hurting bad?
Who does scream and shout and lambast a sick person for her ideals or notice of realism, for the sake of pretentious honour?
Who wants to know, sickness, family, and one, a single one alone with no family bar one.
thus we have Imagine, if it could be different.
I now look up at the half moon, the sleeping dots of fur, the redness of the fluffy bedcover and cushions.  I feel.  I also feel ...sadness....stillness...sadness....stillness...I am alone.....again....

when birds are better than cow-ens!

Yes, well you must admit the small garden birds are pretty, funny and interesting.
As i sit, pleasantly, on a pleasant opening day through an open window letting in musty, crisp and frosty air, i watch my beloved birds.
When you try to relate these to the politicians you are all over the place.
the little uns are colourful, dont engage in mouth to mouth fight, or should that be beak to beak.
they are individuals who dart in, grab and
up the scale in size are the house sparrows, these are an endangered species and they fight like tigers, their small beaks are put to good effect as are their bodies, wings and feet.
Larger birds like the woodies, pigeons and colour doves, strutt their stuff in the name of the morsel by size intimidation and the waddle of coure.
"watch out now mates, i am doing my waddle and look at the body fat index!"
it works to a degree, for the little uns have to be cautious, but not that cautious, they feel it is 'bluff' and it usually is as the fatties can do the 'i'm bigger than you' but the little ones do 'i can get away faster than you' and grab the morsel.

get the brain thinking now, and decide who is who in the penguin house.

reason why i have not been on of late, i am in bloody shock.
No other word for it, after a tv programme called 'prime time' which opened the box to the vast amount of rabid greed there was up to th final crash in our economy and financial status.
Just gallumping, galloping greed and selfishness and idiocy to think the sort of engagements bankers, builders, politicians, and all trying to get the exta 'fix' fair means or foul.
well instead of the hit of finacial fixes, i saw the reality of foolishness, a young man, on the streets in our capital fix himself as he shots up into a blue vein.
near him another man is peeing against a wall down a side alley.
bottles of liquid, cans and froth, blow, tingling in circles.
its pretty much what is happening at Dail Eireann right now.
reason for no blog, shock got to me big time.

Thursday, October 14, 2010

The Irish Social Services Situation is BAD!

On a personal level, i took the twino to town today to get a disab free bus/travel pass.
she had Social security number, photos and doc's letter.
Got to CIE after a circle many times of the main street to find a bloody disab bay, to be told she has to get the form for this signed at her local office and then get back in to town again to have it stamped and a snap taken of her!
Now it always used to be done in one at the CIE office!
If social service issues the forms why cannot twino get the pics taken at chemist and social services STAMP the form.
Save a disabled person so many trips with little access to the centre.
Now, TOWN - I have not been in for about a year, but then i used to park the van and take the scooter out, usually doing the street with Guineys on, the one with good bronze man by the cafe on the corner!
it was crazy there today.
twin had her mobile eaten by the woolly mammoth so stopped at a place to get new one, i told her i would meet her at CIE but as i pulled away up the street, chaos reigned.  Men were shooting up, drunks were in the alley ways, and many of them, a doped out woman was screaming  on O'Connell street with a druggie man and i have never seen this level of deprevation in my entire life.
Every nation is begging on the street, men, women and children.
some collapsed like corpses and rubbish.
some nice men, either samaritans or born again christians were talking to one or two, one poor man obviously was a psychiatric person with depression, so beaten down just sitting on the pavement, probably not knowing where to go or what to do.
How did we let our streets become the dumping ground for the 'totally lost' from the mainstream of care?
I am sure it is because of the closure of the main big psychiatric hospitals, which were shut too hastily and nothing put in its place.
Methadone is not the answer to heroin addiction, i am convinced of that.
they sell it!
We shut everything down that could be of use to the less well off, swimming pools, libraries, drop in centres etc.
Too much of social care now is in the hands of volunteers, the professionals are being paid to be pro-active, imaginative, and are being paid!
I also believe that the 'personal touch' of the Irish, that is making a personal judgement and connection with the clients is in someways counterproductive.  It obscures the reality of many situations.
My twin is right on two things:  Not enough people in our country to pay taxes to fund services and too much of the 'buddy' attitude.
The level of poverty and despair i saw in Dublin City today was something way out of my understanding and it has happened so Damn quickly.
I being a visual person would have picked up these cues a year ago, a year ago i never saw someone shooting heroine into their veins in the middle of town at mid day.
Everywhere i looked there were people spaced out either on drink or drugs, and some in charge of very small babies too.
Sirens were going off from police cards, alleyways shut off with one drug addict screaming over the shoulders of another and about four or five guards and the same amount of squad cars trying to deal with this.
While my govenment quibbles about a national forum to get the country back on its feet, the feeling of a party trying to 'out another' so maybe or maybe not, our country is falling flat on the street.
i am appalled and angry, and very very sad at these developments.

Tuesday, October 12, 2010

Can Awnyah today have two says? grim mental I am

Well, be very careful how one uses this final description, it could and would ruin your life and it has mine.
Today, unawares i think is Mental Health day (or that could be week) and for sure, this week is Social inclusion week). Where that leaves me is anyones guess.
Gripe one is thus and get to grips with this.  I took the chi, Maggie Mai to strutt her pet power a day early
elderly were all waiting.  No staff visible, i seem to have suddenly been upgraded (without pay) to be the tea/coffee lady, the therapist, the entertainer and organizer, yep, i was supposed to just bring a furry to help depressed women, not be in charge with no qualifications of people with hearing and visual difficulties.
Which reminds me i must ask what i do if someone does throw a wobbler of collapse on me in charge - alone.
How do you keep eye on a running chihuahua and expectant elderlies, who have nothing in their lives AT ALL. (The chihuahua does, actually).
we get moving on the one hour i have.  Excuse the pun, but yes, it was like PULLING TEETH.
You see, no one asked them about their lives, who they were, where they are from, so its difficult to remember if you can speak or ney.
No one asked them either what would they like if they had a wish to do one activity for an hour, if they had a choice.
Well did anyone actually believe they have a choice.  I DO.
Swimming and buying 'proper cloths' was the order of the day.
they have shut the pool cos it was too expensive. they have no braille book library and no talking book library!
they were a tad bit 'difficult' today.  Why?  Well they got the unexpected, a question on - themselves, they shut down.
but i filled the silence with who would like some music, yep they were on for that, Brendan Shine' OMG i announced we have him every week, so i say who would like Johny Cash, YES, a winner and 'I'll walk the line" yikes, but they listened.
then came on a jazzier pieces, one lady tapped the table, one tapped her foot.
Ann here, Awnyah shouted, OK, tap them feet, clap your hands, bang the table'  The cat is OUT.
AWN Yahhhh...ah, the biscuit tin, the tea bag tin, any thing.  and put them in front of each, took a hand and said, 'beat that' (to shit)!
and then came out the spoons from the cutlery drawer, each had two spoons and the banging was mighty with a loud WOA, from one when the music stopped/
woa came aplenty, what a surprise when Breda started thumping the tin with her closed white stick, and who says elderly dont  has the initiative? By the way, Brenda is not elderly, she's dumped.

And no we are not in the dessert making music with stuff for the lack of funds, we are in a supposedly modern society where blind are left with nothing, no books, no trips, no pleasure or luxury and we, yes we are beating them drums as if the life depended on it. and the young lad brought the metal tea pot, (empty) to one and we had a zingier sound too!
And they smiled, they left and agreed it was THE BEST hour yet!
the young lad from Blackrock College down the road was also happy and said he had enjoyed it.
I ask him his age, he was 15yrs old.  I asked him what class tutor sent him down and what would he do when he had finished his stint.
He was sent to 'observe' as part of Religion class, which is compulsory, but the exam isnt!!1
well, in MY view, this aint got nought to do with religion in the true sense, its about moral and ethical responsibility  to ones fellow human beings.
to send pre-pubescent lads to observe the oldies hardly equates to participation and education.
Setting a project to INTERACT with a human may have been, not watch the monkies, so to speak.

Now, second gripe and i told you I had two.
Mine entirely, i went home depressed, angry and sad at the lack of humanity in society, I met that bloody long avenue with not a person in sight in the three units, me in the middle and eighteen foot high walls.
No one in the land can have any power, it seems to get AWNYAH out of a knowable (is there such a word) dangerous and vulnerable situation in an alcoholic enclave.
Even if they did, there is no where to put me - except in a sheltered accommodation where i would have to scurry for mid- day meal when the gong goes, sort of thing  - again.
thats the beginning of not having anyone ask me what i wanted.
No one, not one person in our health service, that is no one from social worker, director, doctor, psychiatrist, minister anyone can make the county council move me to safety and quiet at the end of my life with a neurodegenerative disorder!
so who is running this county?  it sure ain't the ones who are employed for professionalism, that is university degrees and experience of disability etc.
it is the daughter of the father of the grandfather who put in a word for the daughter to get the typing job and work up there that damn ladder.
who never clapped eyes on a disabled person, who slidders important doctors support letters into the bin not to be seen again until this BRAT, thats me, asks for my files under FOI, (they dont like that) and discover the most powerful letter of a consultant was is missing.
and, every single consultant i had gave opinion to the contrary of moving me to here.  Everyone, all ignored,
so, if you want power, be a civil servant.
if you want to help someone, be a human and not a civil servant at all costs.
now the bottom line is a Flowery Van on protest at county hall tomorrow 4pm, with duvets and sleeping bag, Dr. Margaret Kennedy and the BRAT, Ann Kennedy, thats Awnyah to you, are having a 'sleep down' at county hall dun laoghaire, 4pm onwards, until the medical emergency demands other.
come cheer the damn awful embarassement and the levels it takes for notice of a damn frightening situation.
right who now runs our country, if you can answer that, let me know, for i want to string em high for ruining in entirely.
Finally, dont forget we all, absolutely all, end with the worms for good - OOO! no exceptions to this rule.
while your are alive, don't make others miserable. thats not what humans should do, Phew, its out, thank god, i wont need to go to the toilet now!

Monday, October 11, 2010

'Implementation Deficit Disorder' again!

Yoa, here is my say, or tis my mind anyway.
Deficit, community et al.
When the HSE at the top, that is the top of the pyramid, the tastiest part of the pyramid or is that actually the part you eat less of?  well, the part you eat less of, those, that are more toxic tell us that community is the way to go, thus i think 'community' is the carb part, the part that gives you energy?
Consider 'community' according to the boss at the pin head top - its a collective of all (pros) working for the better of one (usually the negative cons, we are the downside to the pros). When i waffle a little longer the pros get the pay, and its for life!.
Here is community as it stands - All are very sorry for the plight of one, sorry you are being shot at and near attacked, up a long avenue with 18ft high walls, alone and vulnerable.
Have they seen this before, I ask of one Pro?  No, actually he hadnt, no he hasnt had a client like I, in the position i am in.  And sorry too, there isnt a damn thing he can do about it.
So, seven months on, and even the council admit its not suitable and i have to wait for someone to die off, with a place fit for a disabled i wait the vulnerable wait here.
Now community again as in the famous 'Community health care' which is 'the way to go' really and truly.
right, in the community (the way to go, dont wait to eat), it took nine months to find out where adapted spoons were, and no i never got it through the community.
and it took FIVE years for four sessions of physio, when my body shut out with 'chronic muscle myopathy.'
It gets better:  I am entitled to public heatlh care, oh and social housing by the way and what do i get of public health care - i get a kindly neurologist and a kindly 'tooth puller' of a dentist.
and that is it.
I have to pay for the opthalmologist - how long would it have taken public care to tell me i had macular degeneration, rubella retinopathy, catharacts and the steroids i take for crohns disease are hastening this.
I pay for endocrinologist, gastroenterologist, physiotherapist and rheumatologist all at roughly E150 a shot.
when you need these constantly, thats a lot of money!
thats only the consultation by the way.
How long will it take to get a proper knobby thing for the steering wheel of my adapted van, tis called a 'spinner' and about the same size as an adapted spoon?
How long will it take to get a moulded brace for a spine that is degenerating and has scoliosis and a body veering to the left?
And how long will it take for a knobby thing for the door beside my seat to grip when i go round corners while i grip the knobby thing on the steering wheel?
Yes, I got the go-ahead and assessed to continue driving!
what was the test and what was the cost?
it cost E40 and my blood pressure was taken and i was stood about six feet in front of a eye chart and told to read about four lines of letters (i managed this, without veering to the left and holding knobs left and right and being braced for the task of driving the eye test board.
yep good test that eh?  For mobility and dystonia and such.
Spec Savers could have done the same test i am sure, and did so when i got  my eyes tested recently.
So when will i get the extra lift on the left shoe after they stopped my special shoes a year ago?
they never added the lift for the short leg, which makes my scoliosis worse and my body more painful.
I am also waiting for a special pillow for my degenerating neck which is closing in on the spinal cord, the overbed trolley, the bed risers so that i can reach the window to open.
I am still waiting for a home i can call safe.
as i write this, i am home alone with 18ft high walls and no life on either side, a long avenue and  if my GP says she is afraid to come up here during daylight i have had to come home here in dark for the neighbour, the stronger of the two alchos seem to have fled to england on a funeral errant.
and i am left on me own and vulnerable.
some community care and service for us eh?
who is angry, who is frightened, ask anyone with a disability if they feel vulnerable, we all do and I DO tonight!
I am livid with the services in Ireland for twins touching our sixtieth who are going downhill and left just left.
Implementation deficit disorder Yoa Yoa.

Sunday, October 10, 2010

welcome to my country Hits!

It is pleasing indeed to see that Canada, America, England, the Netherlands, South Korea, Costa Rica and India have wise people who like the blog!

A double bout of paranoia today - now for the advice bit please or should that be 'bite bit'
I want to chomp them up, but not having that effective chompers now, tis hard, tis o so hard.

would a slap across the face do, cos sure as hell staring back even glaring doesn't seem to work that well.
What if i went all 'funny' like, pulled the side of my lips back and slapped me own tongue around the mouth and grunted (are all these actions possible at the same time)?
would that work?  Naw.
If i got up and say "do you know me, just wondering, you have that look that says 'i know you' but it isnt that look really.
Its whats wrong with her, look.
Twin got engrossed in the sunday newspapers, wise girl (or is she, the news is bad too)!
I couldnt read, my eyes were not good today.
It doesnt get any better either, when you are standing beside the girl who was in Art College with you and who had a flat downstairs in our grotty local student lets.
She was at the till, kinda giggling with a friend.  bit juvenile i thought for a grey haired woman!
"HELLO, P" i hollered.
"he, ha, oh helloooo, ann"?!
Hi P, how are you?
No answer except "is that a fan in your hand?"
"Tis, i get rather hot"
that was about the sum total of our conversation.
I went to buy my mags, she walked off.
"ER, BYEeee, PEEE", my fan was gone!
"right thats what happens when the legs are gone," i remarked to the cashier and a woman standing by, who was giggling, in the right sort of way, the mature way!
Up them damn stairs, for the exercise i go, stick up first, then the foot, then the other and watch out for dropping things and hold on tight to the rail with the other hand as well, and you can if you try hard do all these three things together.

Now we have the second paranoia, toothless.
try cannot easily unless something awful happens like the guy who had a football in his face and was in the cubicle beside me at the dental hospital (if you read this, hope you still have the teeth or you have not given them a bit of a shake up).
but when told to leave teeth out for 24hrs, its hard, very.
we do the best we can with a muslim outfit, its surprising how confident one feels in the wrap around scarf.
and chose a very light one so you can breathe and dig up hydrangeas and lavenders at the same time, again, can be done.
Twas to stop the feral cats which have walked over my roof, down onto the wall, down into the shrubbery and took me by utter surprise as it bolted out of the bushes, up that wall and over the hot tin roof this morning.
I was putting out seed for the birds.
so hydrangas and lavenders had to go, and at the same time the nettles and the maize.
You do tend to overdo things as well, when disabled.  Its not supposed to be killing you, but you just feel that time is for spending, not lolling about, something else will kill you off first.
Well thats the sum total of my say today.
I think it is.
All is well with the world, (probably not) but i think this is a well known saying so i say it.
So says Awnyah.

Saturday, October 9, 2010

I did LEAP for Joy!

tis not everyday, indeed every month or year that one has whats called 'the perfect day,' and it wasn't for me, but, it was a great, great joyous day.

One of them days you are glad to be alive, and when did i discover this?  As i was driving down the leaf golden avenue of the older sis, who was away.  I had had a ghastly experience - in the toilet, the crohns has gone a bit mad as i was sweating and near collapsing on my dear twino's shoulder on crusty crispy dying leaves, i felt at one. "will i go home to bed?" that was the question, the answer "yes" so i went down the avenue and stopped.
"Will I?"
Because a crohns mini minor flare can dissipate after a small rest, as one i took to take a breath in the driving seat, on the way - home.
it turned out to be "lets go to Kilquade."
For lunch.
I missed the turning and twino decided on the Delgany turn off.
I whined "there is nothing in Delgany."
but there was, great twisty road of country, twin and i rarely see that side.
and when another junction, instead of going was onward and downward...toward Greystones.
I found a bit of a biffed jade dragon in the charity shop for E3.  It was not a great quality of jade i do not think, rather watery but i shall investigate this rare find!!!
we had a bagel with cream cheese and ham sitting on the pathway at a round table.
Saffi in either my lap or twins and drawing a smile from passers-by.
It was warm for the time thats in it.
we then tried another entry to the beach.
Seas were high and crashing, spray hit the cheeks and the seaweed scent found the nostril.
it was scent, not smell I can assure you.
'Will i or will in not, let Saffi off the lead?"
"Go on," i say, "she is young, would love the dogs"
there were pugaliers and pugs and crosses between the pugs and cockerspaniels, so saffie the cockerpoo, joined the mottley.
she went crazy with joy, bounded and leapt, sniffed and played, she ran like the wind, what a spirit that gal has.
no one need tell me these wee animals do not have souls.
Did you see Saff today? No! She had SOUL!
When the twino and i went back to the van, whacked out, i told her it was the best day i could remember, just the best.
So imperfection is not a bad thing, for without the bad bits you cannot enjoy the good.
And, without the milk you cannot enjoy the tea....
I came home....and had forgotten to buy the milk!

Friday, October 8, 2010

Disabled In Ireland- BRAVE NEW WORLD-AH? YAAA!

You are on 'edge' if disabled in Ireland.
I chose the words carefully because it IS the state of mind always, now and forever more, amen, for me and for many others.
'On the Edge' too, would be an added phrasing of our situation for many with disabilities have little money and can afford few luxuries.
Take housing and work, two basic human Rights i am told, for everyone in the entire world.
Not so here in Ireland.
As a disabled person in social housing all my adult life, when becoming even more disabled they placed me in a frightening and terrifying environment which i have to return to daily if i am out and sleep alone in a cul de sac not suitable for one so vulnerable.
I would like to understand how anyone can be sane in this position.
 Sane too juggling such things as housing need, health needs, family lack of interest (a lot of this in most families who have a disabled person amongst them, here i am not alone, i guess), attempting to carry on with a certain amount of dignity and attempts and stabs at my so called - right to work, in as less chaotic and meaningful way as possible.
Dignity goes out the window as well.
you seem to have all sorts of intrusion one would never expect from people whom you do not know.
that is care team workers, some good, bad and indifferent.
but you always have to be present when they are here.
you dont feel 'free' as in Freedom of Movement.
You also cannot work when they are around, because it is not a situation you are used to.
The psyche gets jumbled and in disarray.
No matter how often you request of the workers to keep clothing and other items in the same place every week you may want a top one day and its in a completely different space.
this is a rocketing of your energy and nerve levels.
Panic prevails if such things as mobiles, hearing aids and keys go astray.
so edge-ness and panic are normal brain functions of the disabled.
think of housing too.  You have no choice.  You are poorer, weaker and tired.  You do not have the 'expectancy' of humanity prevailing.
You cannot expect the once thought of notion of christianity, it is not there anymore.
You have to rely on wit and luck.
"How will i keep the adapted van on the road"
"HOw can you get that adapted eating spoon, which last time took nine months to sort, and having to buy it in the end, my only one has been mislaid now!'
THAT alone took three trips to the capitol!
when social housing is precarious, no units adapted for disabled people anyway, certainly not in my borough, my twin has had to sell the roof over her head so that i can be got out of my dangerous situation.
You then have another innocent individual involved which should never have happened.
Charity yes, but this is ridiculous!
My twin has PD, so starts the edgi-ness and panic for now she is - homeless.
You have no family, few friends, all charities i have contacted have come up with nothing and there is
little support on the level of our individual conditions.
Once a month meeting for twino if she wishes with the PD association.
but still its basic, SO basic.
Tis all makes a mockery of 'People's Rights'
And a person wants to hold onto 'Dignity, Work and hold a safe environment, have health needs addressed, friendship and family and living where one choses.  You also need to be viewed as equal whose brain has not gone to the boots because you are now ill and wibbly wobbly even wonky!
Does any of this happen? NO, in any shape or form, the exact opposite occurs.
Very much so.
Forget 'your person' when you become disabled, violation of many sorts is just a speak away.
Ask anyone who is disabled if so, the people, my friends on the CRS forum.  And others, too many, whom i meet who are struggling - badly.
Brave new world - for who????

Wednesday, October 6, 2010

How DARE they!

Anger can be for good or evil.  To day it was for the best, and drove me further into thinking alleviate not devastate.
To use Anger constructively has to be the AA and here that means Anger Action.  As in 'implementation deficit disorder,' mentioned in the media recently of our government, i do not want to emulate ignorance.  Sis Julian is reading this, and Sis Julian told me and taught me 'Action not words.' So too, will Sis Julian know that another HCJ'er is carrying on the message amongst the christian community of 'victims of clergy abuse of children and vulnerable adults.'
How dare my 'gang' be dumped like this!  How dare we humans do this to all...once we get we have human beings who are bright, articulate and we have human beings who are depressed and bored out of their tree, knowing full well they are just waiting to die.  they get up, they are fed, they are sat around a table with a cup of tea and half an orange, they say the angelus at mid-day and then they shift and shuffle off to dinner.
most will go back to their rooms to read their braille books or listen to the radio.
They do have relatives.
Some have been dumped and forgotten as children to this place, others after 17yrs of age and others when they get acquired blindness and stumble a bit.
And we all shall stumble, lets not forget, what the bible says 'do unto others what you would want to do for yourself,' or sommut like that, when Sis Julian knows how to comment back she shall tell me the truth of this bible message, i hope i know it, i think i do, I KNOW i do.
It isn't about placing the elderly in dying cages.
Right now all who read week in my area is 'Social inclusion week,' yes, i didn't know that either until i picked up a leaflet today, if you care, adopted a granny somewhere and show them how you care, how much you care and most of all WANT to, and there are Grandpas out there too......just waiting....I am not being sanctimonious about this.  I am Bloody Angry at what we do, and ever since i have been with 'Friends of the Elderly' in the 70's i have seen this outrage visited upon the weak and vulnerable.  whatever it was about me in my psyche then (I was a very troubled young woman), i loved the elderly, then at 18 and now at 58.

Monday, October 4, 2010

bungalow bliss

Mother of Jaysus, sure God made the nut but he doesnt crack em.
twino and i thrawling greystones for our 'forever' home.
how on earth did this come about, not on the agenda this one, touching 58 next month and teeth out on THURS...start cooking the ceoliac soup!!!
It wasnt that funny to come home to a unit where all your worst fears were realised.
also not funny that no communication has been made to me via snail, email or any other mail from the hse nor council, we know concord has been 'taken out' but shall i say it again Mother of Jaysus, they have sure left me and my poor twin in a pickle with no advise, help or constructive input into our awful dreadful dilemma.
oh, and i came home to howls and gales and rain.
Maybe i should emigrate to greystones.
both came back more confused, more uncertain for the future and more scared about even shifting one foot forward.
tried to get 'sense scotland' today, but the girl on answering machine spoke so quickly i couldnt catch number, when i did after probably getting the fish shop and the undertaker in Glasgow i left a message on another answering machine.
the chis are back, one is licking the other's ear.
i brought them a new bed and both have pissed on it.
i should post it outside county hall, the piss and hopefully the shit if they ever even have the nerve to do that, i doubt it.
yes, sick as a parrot i am and the toilet is testament.
fed up too and my legs will give withness to their inability to even step forward.
my next trick is to psych self up to get the choppers out.
maybe three kinds, one for the hse, one for the corpo and the kindly prof nunn should provide a pliers to pull......the teeth....meanwhile i shall await the soup or other soft stuffs.
hope all are well in their homes right now.
oh, saw my other new great niece today, she gorgeous, four weeks old...what a long way she has to go eh?