Is living in Ireland a syndrome?

the definition of syndrome is a 'cluster of manifestations that cannot be defined in one physical condition,' well thats my definition.
I have many physical conditions but am known to have been infected or effected by one virus pre-birth, so i have a syndrome, all add up to one or thought to add up to one starting point, Rubella.
So i am using this analogy to refer to sickness across the board, with one starting point, Ireland and being Irish.

The battle in Ireland is, multi-facetted.
my twin has discovered that!
When she puts the hesitancy to work, the work-shy ethic, the lack of action and the promise of same she reels at the difference it was in the country she adopted for over forty years.
She has in essence been hit a mighty blow.

How on earth has Ireland functioned she has wondered.
How on earth did anything get done!
Well how did it, i too now ask this question.

A malaise has set in.
A sickness born from an ethos, that is distinctly Irish.
Today for instance i had my Disability Advocate.
Advocacy is getting something done for a less able person...
Meaning a person has designated that person to get stuff done..it is supposed to do exactly what it says on the tin.
This woman i have met a few times.
I have emailed many times.
we have been in phone contact, email contact and the directions have been pretty specific.
Today, as i say she arrived..again at my door with her jotter or notebook or diary whatever.
She asked me a weird question.
'what is your vision of what i can do for you?'
I giggled at the phrasing of words here.
"HUH, are you serious?"
As so happened i had my laptop nearby.
I googled my mail box to see our number of communications.
I read out.
18 emails,
7 emails.
3 emails.
Going back a couple of months now.
All saying the same thing,
all asking the same thing
and all requesting the same things.
My requests were plain.
- basic services
-support
-help to make my way in a new county
-some useful entertaining and productive communication with the natives and creative persons is needed so where can i start in an alien county where i know nobody?
-support, support support.
These were the reasons of getting the advocate.
So far nothing has materialized and today i am asked what my vision for her in regard to me is!
I thought it was pretty well explained.
I really did.
Obviously not.
Another question, one asked when i had first met.
"Now tell me what are the conditions you do have?"
"HUH?" I giggled again.
"I thought they would have been stated at onset."
"Yes, i know, but tell me again."
("Why?")
I have a syndrome.
So does she, and so do all.
A cluster of ills that go to make up one ill defined problem.
I put it in one here - we are lazy, my friend.
We have a difficulty with another word.
ACTION.
we are all blow and no go.

When my twin gets through a difficult day of getting no where with this nonsense she rings me saying she had a difficult day getting through this nonsense.
She is weary.
I AM WEARY>
Is this the 'new way?"
the new way of dealing with problems and difficulties.
The new IRISH way...or more of the same.
The Irish way!

An older sister tells my twin that 'You are in Ireland now, not London."
so it is KNOWN.
The syndrome, that is.
We have promises of letters being written, services being given, phone calls being made.
Nothing happens.
No services either.
HOme-helps do no home help they play with soap suds in the water.
To leave the saucepans for the HOme helps is called being abusive toward home helps!
Give me - and my twin - a break!

Home help manager - "Oh i didn't know you had moved into your home, when did you?"
In prep for the move and the need for er, home help, i had rung two days before the event.
'Oh yes i moved in two weeks ago.  I rang and told you as you had requested."
"OH."

I am two weeks without a motorized vehicle after crashing the one i had into a tree.
Again more of the same, symptoms of inertia and changing goal posts.
One tells me one thing, another another and another another.
If you can keep up with the deception and the rejection of what one said to another and "No, he was wrong on that, he shouldn't have said that."
WELL he did!
Nothing gets done.
"OH you have done so much in your new home, in so little time!" i am told from jaw dropping visitors.
"Yes." i say, i wanted to and i had to so i did so.
Its easy.
Its called ACtions not words.
Peezy.
You work hard at this.
You work. Period.

But as the sister said to the sister.
You are not in London now, you are in Ireland.
She didn't have to say anymore.
but she did actually.
with twin in mighty tears at the lack of action, the stumper was 'i told you you couldn't manage and you should have gone into sheltered accommodation!'
Why i ask myself is this the solution?
It isn't a solution, its an excuse for a sick person cos others cannot or won't help.
get shut of her when she bursts into tears and needs help.
Whip her dog, her fantastic dog away and stick her in magnolia with bewildered.

Promises of help too, once i have moved into my own home.
well that didn't come fast.
the manager interviewed me about my needs and what the home help would do.
We had that all before months ago when she met me up at my twins.

All the workers of the world (well, Ireland anyway) manage to not work for their clients cos they are on 'annual leave.'  (euphenism for a few days off)!
or, 'training days.'  that is sitting in a wheelchair for a few hours to realize what its like being in one.
or lifting, as in 'how do i lift a lump of potatoes in the shape of a human being?'
the cave man just lifted.
Irish people and sophisticated workers have to train to life.
they go on refresher courses too, cos they tend to forget.
One thing for sure, they don't forget to eat or to cook do they?
they forget to lift.
Yes, i am a begrudger and wailer of litanies.
I have suggested that Dr. Raging Wheels starts raging and dictating and writing.
we are a country gone awol with laziness.
money for old rope and bathing hands in soap suds for a few hours.
I have never seen it take so long to wipe down a few surfaces and wash a few crock and clut for a sick person, one sick person.
not after the Vanentine's ball, no. not after the Farnley either.
we are LAZY.
no amount of emails can describe this adequately.

Pinch me please! is this true? AT LAST!

How many years folks have i sought a better way to live?
How many years have i stuck out distress and trauma every day and night wishing and hoping for a better type of living and in a better environment with safety?
it has been three full years since DRCC decided in their wisdom to uproot me from my community and move me away from it to an unknown cul de sac.
This cul de sac was not even known to many in the area and certainly not to me or my care team.
This is where they decided in their wisdom to place me.
I was becoming more disabled and asked for rehousing in a downstairs apartment.
One had come free on the street i had grown to love.
They refused me that place on the grounds i did not deserve it as i was a single woman and only needed one bedroom.
Well, i had already a two bed apartment and already so due to my disability of a different type.
What i experienced in the cul de sac with no name doesn't bear thinking about.
I was shot at by the children, had hurley balls thrown and eggs and water bombs.
i was intimidated by all those older children and by the men.  It seemed that all the men in that street were alcoholics with only two women, one being spanish.
I had no where to go to, no one to talk to and was sandwiched between two men with alcohol issues who drank heavily and threatened me.
I was single and disabled.  I had been sexually abused as a young person.
i was alone.
Also, the place was tiny and claustrophobia was awful.
there were high walls all round and i saw no one and heard nothing but alcoholic screams and fights.
i was terrified and taking hammers and heavy implements to bed with me in case i was attacked.
Many times i fled to my twin sister who had relocated back home.
Three full years of finding a way out.  This had uprooted my dear twin, a person i loved and who had also expectations for her retirement after a very fulfilling and rewarding professional life.
This was coupled with the disruption that was needed to get me out and not helped by a family who found me pesky and demanding.
Demanding i was...'Please help me!'
In fact, the demand was nothing other than despair in my heart as i tried to live day to day in hope for a better way.
My twin and i also had fraught relationships during this hellish period for both of us.
We fought a lot and found our characters and personality had grown in proportion to our different lives and different experiences and ways of living.  Not to mention different countries of choice!
We made decisions not approved of by the family of origin and we made decisions also not approved of in the economic sense and the time that is in it.  My poor country now is not feeling charitable toward the least fortunate and disabled and struggling.  My country like self is now completely and utterly broke!
We held firm.
Days were slowly passing with no answers and it was proving unrelenting hell on earth.
We then had to relocate out of our county in order to find what we needed as disabled women, single and alone yet wanting to be near each other.
We always wanted to be near enough to care.  This is not alien to our character or ways but does come naturally.
We also wanted suitable homes, bungalows with easy access.
We found the homes within a small enclave in Co. Wicklow.
The natives are kindly and gentle and seemingly have embraced the oddity that has come into their lives, rather surprisingly.
We already have proven 'Characters.'
We are noted for screaming at each other, having dogs that bark and being very different.
We are also noted for howling at full moons  and holding up pineapples (this for photographic aesthetics and fun) on my part.
We are noted for getting up at dawn and dressing in attire not seen before, that is purple woolly dressing gowns over african kaftans and topped and bottomed with woolly gloves and boots, all for the snatch of a steak of red or rather a ballooning of amazing colours peeping up over the horizon, awakening myself to take the image of a lifetime.
this is a purity i have not ever experienced before.
To wake with wonder and awe, to awaken in safety and a haven.
I am now fully awake.
I have arrived and can do nothing other than pinch myself.
Today, i shall remember.
I am now in.
I am in my own home, with my two dogs Ana Chi and Maggie Mai.
My twin is in her own home.
She with her dog Saffi.
WE have arrived.
This is what we had fought for and fought over.
No, no sheltered accommodation.
No, no living together for economic reasons.
We wanted to get back our sanity of what we had known mostly.
Living quietly on our own, the ways we had known and our ways of dealing with life and all it has to throw at us.
Remember, we are touching the golden, at the age where settling down is normal, uprooting not so.
Who could blame us for wanting something better than we had had before, if this was to be the case?
We have settled down.
I have a wonderful wee home now.  An even more so wonderful garden, full of potential.  I have already asked a neighbour down to identify my weeds!
I cannot believe this awakening from living in hell to now living in utter peace and quiet, well lets hope time will deliver on this last part.
Knowing my twin is up the street not far from me is the bonus we had sought for too.
We will have all the hurdles ahead relating to our disability and illnesses and that is not in dispute.
We recently had the very bad news that twin now has to undergo Cancer treatment and i had a bad bad day of trying to figure if i was to live or die, fortunately i walked away from a car crash unscathed.
that crash enabled me to embed myself firmly into my neighbourhood as i embedded into trees and vegetation in it and had many stand round until ambulance came and had a sweet talker at my ear as i lay horizontal on the damp and cold grass.
i have made my contact.
we have made contact.
we have arrived.
woa.
What can i say to all who have hurt me in the past decade?
what need i?
i can say, i did it, we did it and we will survive anything now.

CRS rules OK!

Well CRS is a big 'hit' it seems as peekers and peepers looked and read a bit about the dilemma facing the Rubies.  All is not rosy nonetheless!
NONETHELESS, i am asked to deviate from 'misery' and a constant whine and gripe.
Should i or should i not?
HUMMM....for once...just once.
Well, yes actually just once, so be uplifted and enlightened and delighted.
I am deviating...not much..just an inch.
Away from the reality of more of the same.
Ah no, not really.
Spring is in the Air, children are screaming on trampolines...yikes...beside me in my new home...yikes. God bless the children?
What about the wrinklies?
I shall say nothing and take my hearing aids out and fully understand that our 'clocks' will deviate.
I shall awaken to hear the birds and they shall be struggling with the shoe laces and school bags and then i shall be in bed, hearing aids out once again, when they have their play stations full blast and couldn't care a shit about the adults all around.
Well, hearing aids out i shall be fine.
When my shed is relocated..away from the tramps and the visual impact i shall sound proof the thing and take the hearing aids out...again..and all will be well with MY world.
Not my country or the fiscal state but my small wee world where from time to time a peeper shows out of curiousity.
When curiosity wears off, peepers go and hearing aids will be out again!
That is, if i am not up at dawn listening or trying to.
Ha! Do you remember that wonderful day you tripped out with BirdWatch Ireland, 4am was it not?
It was.
'Oh, did you hear THAT?"
"No!"
"Two o'clock, there!"
From a stance of twelve i look two o'clock, and i didnt see the bloody thing nor hear it.
It was a resounding disaster as not one tweet did i hear and discovered it was counterproductive to awaken from sleep to go listen to others awaking from sleep.
this is an occassion i would have benefited from staying absent from.
I have since and pretty much benefit but miss not hearing.
Crows and Magpies aplenty, small birds - NO>
Well...I compensate...I feed them so get to see them, close, up close...usually very close.
I am happy with the solution.
Now the jubilation of it all, i am on the move again and pretty much moved by it all.
I simply have to stop going for twinkly things, as in Magpie fashion.
them wee things that facinate a person of my inclination, snatched for a pittance from the jaws of a rubbish tip in the guise of working the community service by adding to the charity box in a charity shop, i go every day and come away disappointed if i am not uplifted by a 50c twinkle.
the kind that sets a small beat flutter at a 'coup of a find' well, for 24hrs, anyway.
That too, is a coup, believe me.
So the move is moving apace as all my stuff is IN, and some has been booted out and just a tiny left to shift and i then follow the body and then i can finally say, the move is complete.
After that my friends i am never moving again until i go out in my eco-friendly designer cardboard coffin or a mug.
Ah, bonfires are not allowed on private property.
thats another idea scuppered.
So, it will have to be the eco-friendly lightweight coffin.
So enthusiasm for life is on the upper after the howling at a full moon last night (i have just heard the twin scream from the kitchen, so enthrawled at her computer she burnt the pots).
most of her dinner now is a-shrivel.
Well, i was barked at for reminding her on her pots last night, over and over reminding her as she was glued to the glowing rectangle that is laptops.
so i barked not.
i remained glued tomy own and kept my peace.
the potatoes burnt up and so too the saucepan and no lessons will be learnt on that one.
a jaunty trip through a blog on the seriousness of disasters and traumas for one evening is about to come to an end.
I now have to seek out a nice snazzy adapted van that can replace the silver bullet that hit a tree last week.
Insurance is paying up for repair, and after that i am shutting the chapter on the pink and purple flower encrusted shape of metal that once brought a smile to the chizlers and their mamas on their way to the school.
When the shoe laces were well tied.
My van has been tied, and well tied up the backside of a tree and there it shall remain.
some other eegit can drive it but i will not.
so suspect is it.
Panic rises to think i will or can or should.
so a van is needed and i must seek out.
I hear goddam awful screams from the glow in the corner, the twin has turned on some reality show as twin eats what is left of the potatoes and her dinner.
I am off...jaz

A day like this does not come often

How on earth do many cope with adverse events that LIfe inflicts?
HOw can you explain it to anyone, anyone that we, the persons in conflict, come in contact with?
I speak of the people who are either family, foe or professional.
I know all trot along and try their best and belt out the days in either abject despair, a watered down feeling of contentment and the odd glimmer of love, glimmer of life and glimmer of happiness.
I guess thats it.
We all do this and it never really works does it?

But how do you do such strong events as twin and i are 'doing' and wish with all our hearts that we too could lighten up and relax and do what we both feel is deserving?
A chance to enjoy a slice of life, something neither of us had is not a lot to ask.
How can you even begin to comprehend the assaults both have been subjected to?
A virtual escape by cattle boat to a strange country at the age of 17 with no qualifications, no friends and no support networks in that country.
A virtual escape by the other half into the oblivion of medication, wrist slashing and despair and yet both survived
Against the odds, i might hasten to add.
Who can imagine what it could have been like to stand deaf, alone on a stinking and drunk and shit ridden boat with the breeze of irish salt on the cheeks and the tears and unspoken pain in the flesh.
Who can imagine what it was like for a hopeless 'left behind' bereft of a dear sister who had always  saved her from drowning.
The sister she slapped so hard at night fearing the she had departed leaving her alone.  I was about seven and this was continuous until about twelve.
After that it did get worse.
We separated and lost a lot in the parting.
all of forty years plus.
Once, we may have been bonded both physically and psychologically.
We were not to remain like this and life experience dictated the path of our ways and abilities.  We also learned to ride the waves and do it 'my way.'
Little help came then and less comes now.
We rode rollers today.
My twin bereft of her health and meaning.
The "why did I come home?"
Why did she?
Why?
Why has she now to face Cancer when she had struggled so hard in the past three years and on the cusp of the settling to her new life and pleasant life, in a wonderful part of our land that is gentle and giving?
Why?
My twin came home my friends for more than she has received.
She came HOME.
This is something also hard to explain to the uninitiated.
If, you had been away for so long as four decades and sensed and felt the land she was brought up in and yearned to return one day, you would understand.
she does not understand why our country, her country and her family and society around has not embraced the BFE.
She, who taught us all to look at such pain of clerical sexual abuse has come home to her own personal pain of loss and bewilderment when her home coming has bottomed out and gone pear shaped.
The hope she held for over forty years up in a puff, my friends.
How can you explain this to family or those she had left back in London.
Now, we are here.
Here in a new place.
We are on the cusp, to say to all the begrudgers, 'we told you so,' but also give that two finger salute to those who wished us away, wished us shackled and shacked together, twins who love but twins who also are their very own persons. Many had wished me to give up my companion chihhuahuas.
Many had wished for my twin to relinguish her Saffi to another and go to the Magnolia Land.
No one asked or embraced her to her own family.
We were in essence rejected.
I certainly was.
We felt this today.
I made another big move, for the third time, a new home in an alien county away from a stomping ground of forty years.  A ground on which i knew each blade of grass and where i heard my dad whisper and watched the mother bravely fight her own fight of living.
I listened intently and learnt.
Now we both are learning that the struggle will be ongoing but we will struggle with panache.
My twin has lost so much in her decision to return.
I have lost so much by living at all and by being brave and brave again.
To break from the oblivion of medication takes some doing.
To break from the relentless cycles of wrist and body slashing to cut the hate for self out was a hard task and took a lot of blind faith in myself and bravery.
To never resort to a comforter when in pain is painful.
To stand with back to the wall and be shot at by a hail of bullets from most who faced her was difficult and soul destroying.
We both, my twin and i faced demons and people who wished us away.
Wished us to a place where we could be forgotten,  but they could live. They could sigh that two sisters in pain with neurodegenerative disorders will not be part of their lives and part of an inch of responsibility.
We are not away but very much here and very much alive.
We will survive and we will celebrate what we have done despite all.
We both have our fabulous homes suitable to our needs with the companions we have chosen.
We both have love in spades, for life and for each other.
We both know we can depend on each other in times of hardship.
We both will help each other during this last decade of life.
We shall survive and not face magnolia, ever.
But right now we have an urgent pressing matter.
My twin has to rid her already ailing body of Cancer.
I have to face my demons daily and be brave.
I have to cobble together a mode of transport that will go to enhancing our lives and keep us sane and mobile. Both have been force to stop in our tracks.
We both will gear up again once the obstacles are over.
We shall have life in abundance despite.
Did you see us howl at the moon tonight?
yeh, bet-ya.
And bet-ya bottom dollar we will survive.
Pineapple and all.
Welcome to the land of living.
Twin style.
Not by half.

congenital rubella syndrome and hardly a stat i can be included in!

Ok here goes, for all the Congenital rubella syndrome adults out there, and for my Linekin whatso, and all.
It hardly matters a jot that the WHO was impressed with my spirited article of 2010 and nearly, just shade it that a neurologist picked this article up in the Irish Times and decided to pull me in for a review and to just see what happens next.
I believe she still finds me spirited but at times tiresome.
Well you would be, i am in Ireland!
its tiring being in Ireland.
It is tiring being sick in Ireland and its tiring having a condition/syndrome that no one knows of and no one cares about.
Fact.
This is also the same in America.
Look at CRS my friends, that is Congenital Rubella Syndrome, a set of severe reactions to being exposed to the virus German Measles, whilst still being formed in the womb.
That wont enlighhten anyone i guess.
I will try, my best.
Deafness and blindness in all its degrees of severity.
Autoimmune complexes and diseases in all their degrees and severity.
we then have the neurology and psychology and if you wish psychiatry but of the latter, that hardly comes in for they swipe everything they can.  (of you have a touch of depression, in all its degrees, be it a reaction to the reaction of being crs, next thing you find you are on the anti-psychotics for mental illness (we have a touch of depression, little 'd') and if you have a larger touch of depression as in big 'D' you are zapped, that is ECT.  Yep, pretty much.
so we shall leave the friggin dreadful unscientific field of psychiatry for that is what it is.
We have the senses effected, the brain, the soft tissue organs and the muscles and bones and joints and just about everything, the heart, lungs and kidneys do not escape.
you have a human disaster zone.
the catch.
No one knows about CRS and you dont fit in with, here goes:
the deaf world,
the blind world
the deaf/blind
the dystonia world
nor the parkinsons world
nor the cardiac world.
I am talking about we don't fit into just one world and because we do not, no one can do anything for us and no one knows which world is most appropiate.
we belong to them ALL!
that means we belong to none of them!
i am sitting in my wheelchair in holy ireland, and the people i do know with crs are sitting in theirs in america, or at least some of them.
and we are an eradicated lot, we have an eradicated condition hence we are eradicated.
we try.
you feck around the country in your adapted van (you used to until you crashed that into a tree) and went the length and breath of my (my situation but not unique) country to see a specialist here and a specialist there and a specialist everywhere.
you cannot get them either in the one team and not even in the one hospital.
you are not so unique though that we are nice specimens for study - we are!  and yes, CRS will come and go and come again and we will have more of us and more, there is no getting away from this.
It is cosy to say we are eradicated.
we are not, neither is the condition nor the cluster of ill effects to the ravaged body.
It is hard for me not to be protracted and think of every sentence, noun and verb, when you blotto tired and out of your tree with exhaustion.
its hard too when you are frightened.
lets list for instance all that is wrong with me, that is all they can see at the present moment in time -
I am deaf - i have about 35% left of hearing.
i am visually impaired and getting more so with macular degeneration, cataracts, detached vitreous, and rubella retinopathy.
I have scoliosis (curvature of the spine), but thats not as bad as it can get...we wont go there, we just wont.
Also Pes Cavis, thats another condition hardly heard of, small feet with unusually high arches, so you walking on bones, literally.
i have one short leg.
no special shoes and no shoe lifts, (the irish ran out of money, see).
next.
Hypothyroidism - that is the thyroid is clapped out.
Primary Sjogrens Syndrome, the same as Venus Williams but without the money!
that means my moisture glands are dying and will die even further and i feel it.
Crohns disease, that is my guts are bad, very and i have gone through one bout of surgery for which the consultant let me out with an infected wound and it burst three days later.
No, i am not pleased nor will i forget that one.
I have Fibromyalgia, and no my friend, that is not yuppie flu or 'anxiety' its real and the WHO agrees with me (!) its a disease, period.  Its painful.
Very,
try it, every friggin part of the body pains and aches so that i cannot touch my own fingers and bones and have to lie and sleep in natural soft fabrics which are very light and if i cannot cope with that i use a bed cradle.
i also have raynauds, near frostbite at times that can be so bad.
now on the neurology side, i have generalised dystonia.
that is, my muscles are fighting with each other and when the left says to go one way, the right says go the other so we have a blitz of a contradiction so in the end the muscles do a sort of aerobic dance when it should be doing something else.
thats all over now, thats painful.  Try sleep with that, and restless legs, yep have that too!
We shall stay with the brain for a while cos this is a very good one...remember my distaste for psychiatry, watch this space....
I have frontal lobe athropy, thats causes early dementia, but i need not worry, i have had it for decades...its presumed to be part of the reaction to the wriggly virus, if it wriggles and i presume it does.
my feelings and emotions have atrophied so much that i am florid and verbose and laugh alot and cry alot and regulation of mood is kinda well atrophied, but to me its hell.
I had been put on anti-psychotics for this for decades.
Well, for depression actually, the type that says to me, jaz ann what the fuck are humans about..i was that befuzzled and still remain so.
Ah, but they have now sorted that.
I dont have a mental illness, which is great news for me, but i could have told them this.
i have Asperger Syndrome, also known to co-exist with CRS adults and not so adults.
Have you decided that i am a disastrous basket case yet?
I have.
Here is the sickest part...I have an identical twin...yep...half of me was once me and now it is her who is my right side and i am the left, or should that be i am the right and she is my left...i am left handed so i guess i am the righty and the twin is right handed and she is the leftie.
It doesnt get any better to deduce that she is fucked too.
As like our country.
we are trying so hard to end our days in relative, well, tell me.
we are not doing well.
i crashed the adapted van last week and nearly ended my illustrious life, and my twin was diagnosed with Breast cancer of possibly both breasts.
and we were out this morning at 8am and came in around 6pm and i then had to fill the coal bucket and eat.
I am screaming with the Big D, and the Big crohns and the big angst and the big whatsit.
we get little help from any source whatsoever.
we have a CRS confraternity.  them that say we shall be united for ever and ever amen.
well, thats what i thought but the only ones united are the ones with CRS not the ones that say we are united with them.
So 'Sense Scotland' has not responded to an email to request some help cos they say they join forces, well, they havent in my case.
I got no response from the Helen Keller Foundation, again my despair was kicking in.
and the anger kicking in big time now.
we are in effect left to stew and spew and wallow in the mud that is CRS, on our own.
the ones who have it bad are institutionalised, the ones that have it not so bad are so bright, well thats what i have found, they are going mental with despair.
we are going mental with despair.
without any consideration as to who we are and what we are and how we are supposed to cope we are trying to do just that, with next to no resources, either here in holy ireland or in America, that is the USA and the WHO may be impressed with an article for which they ask me to include on their website when they tried to impress on the world "would you like this to happen your kids?|"
after that, you are on your own mate.
as for some specialists, they are trying to help within their own specialists fields, but its hopeless.
we are eradicated and neh, i am not even vindicated.
i am shovelling coal and crashing vans and with legs that dont work and nothing works i am admired for being spirited, and thats about it.
"Ah, you are so spirited, I like that."
I do too actually.
but not CRS and no services.
we dont have a nurse, so they say, for they have a nurse for post polio and a nurse for ms but not crs, so sorry mate.
you have been duly eradicated.
i have, we have, all who have CRS have.
Do we even have family?
nah, no, neh never.
none, but i have the left side of me and she has the right side of me and between the two slapped together we are making a bacon burger of this.
If you read this and are in the media or in Ireland, will you tell the media where ever you are for we are with you there too, and if you are in Ireland, that is the 'little ireland' with the little i, cos there are some bigger irelands all over the place, but i am on the little island ireland would you tell Dr. O'Reilly, aka Minister for Health, in the Department of Health, Dail Eireann, Dublin Ireland.
that should get to him.
phone number, in the yellow pages.

mixing magic and misery

Yes, it can be done, it is done and always shall be done...that ability to see the magic within the misery.
to see 'chances' and yet many fail and then feel it so.  We have the misery.
What makes the world 'thump' may i ask?
is it pure happiness and pure wealth?
is it pure happiness, health and stinking wealth?
what is it?
I say, from a little person on a little island that many never heard of or least care...that what it IS that makes the world 'thump' is the misery.
Yes, you have heard me.
 Without this misery which all of us now appear to experience in spades a reverse feeling cannot happen, when a positive dismisses the negative.
So in order to feel a positive, one has to feel the negative.
it never happens the other way round.
you cannot gain from misery, you can gain from triumph that gives the umph and bump and thump in the living.
I thumped today, up and down and frothed at the mouth and tears in the eyes and thumped again and again, mixing and matching the magic and the misery.
The struggles of the day were many.
It started cold and dreary and rainy.
In both heart and in the hearth.
My twin also felt this misery and this dreary.
we had the misery - in spades.
did we thump it out.
yes we did.
My twin is waiting to be told if she is another candidate for the big C or not.
She is deflated in her experience of coming home to a minor country on the fringe of most things major, a country that thinks itself big but is in fact very insignificant - in the scheme of things.
She has thumped up and down with finance and fears today.  She has slumped mainly down on a sofa for the day.
and she has scoffed and coped to get through it, just about.
she didnt find it terribly pleasant.
but she did thump.
she armored herself like a michelin man in a black jump suit to thump out on a mobility scooter and scoot around the town, viewing and reviewing and i guess enjoying (that part i have not been enlightened on) but the small smile made me believe she did.
she then trundled on home.
and slumped again.  But a fire was built and the hearth is warmed and she is here and safe and has her Saffi with her and she is safe as well.
I did my thumping too, to advance the nature of my existance in the world of IT and website design learning (i failed here) to advance the white walls on a new home (i failed) and to advance a prospect of health care and cover, i failed in that too, but i met a kind man and one or two things were suggested.
i then met my nephew for a coffee in Starbucks, another thumper.
and then i fecked on home out of the hubble and bustle to get back to the twin.
the traffic was murderous as a relatively newbie on driving tried to get off junctions onto the motorways.
i thumped again when i had an alert signal on the dashboard and decided to pull over.
We now have a woman, without a mobile, in the dark with hazard lights on and the world going frantically by at rush hour.
My thump of positiveness out of misery came in the guise of a slim man with kids in his car, who stopped and we went through the dashboard mechanics and all agreed that i am ok.
i have to get that van to the garage tomorrow, ok but i am ok to move out and onwards.
Another thump being he waited until i found a slot to move  into heavy traffic before he thumped out himself and thumped himself back to a home.
I personally just wanted home.
to see my twin and there i did, see my twin, smiling at me beside a blazing fire.
The dogs had been fed, the place was warm and she was here.
 When i say the misery begot magic and positiveness it did, i am warm with magic that after all, tis good to be alive, when we all kinda belt and blast through misery for the little magic there is in what we call the misery of LIFE!

a bone crunching tear jerking week-innit!

Words failed me...since the mountain...i came down and to a load of secrecy and that S seemed to be involving everyone, bar of course, myself.
So, it was a surprise to be told i couldnt go to a therapy session..no, that was cancelled.
Yes, it was cancelled, by order of the Twino, who told me, i could go to the GP, cos thats why i came offa the mountain, but not to the therapy cos that interrupted her plans for the day.
I bawled at the GP's and got a ticking off...keep taking the medication...
- Rather would you fecking start taking the medication!
I promised on one, but not on the other.
- With orders from the twin i was to stall the return.
I stalled out in the charity shop.
I think i was having a blind spot on this 'surprise.'
I was blanked and blinded.
Surprises in this present mood and time just didnt seem sort of appropiate.
I did a bit of retail therapy.
So i bought a bed, for the chihuahuas, cream with paws on, and fluffy.
out the door i went grasping the cane and cute.
the phone rang, the wind was whistling and i was to open the van door.
Not in that order but similtaneously so i tried.
God i tried.
I placed the basket on the bonnet of the van.
Placed the phone to the ear and stupidly tried to find keys in a mangle in a mangled tangled coat and scarf and gloves and phone cords and we had a bit of a disaster.
the Basket was taken by the wind, the fluffy cushion was ballooned down the centre of the mainstreat, bouncing off walls and curves and people and it just flew on, and on and on...out of sight...out..gone...to Bray, the Irish Sea, Malahide or Belfast, taken by the wind's fancy to make a mess of the start of the day of surprises.
that was the first, but not needed mate.
I bawled, for the second time in less than half a day.
I retrieved the basket from dead centre of road, all cars stopping for a dead denuded bed for chihauhuas, looking ridiculous, in paw printed out..and half of it to Belfast.
Or water.
I released hand from phone, twin still on it.
I then picked it up again..'Where are you?"
I couldnt understand.
Into a shop i duck, "where are you?" again, and i told her to feck off half a retail therapy and that of half a dog had fecked it to Belfast and i hoped to find it before it arrived at its destination.
OUt the door, i felt stupid.
I asked a polish woman if she had seen it.
her head nodded like a doll.
I am embarrassed.
I get into the van half dazed with surprise.
I arrive at Pebbles, half dazed and depressed.
I was to face a second surprise.
so i did.
silver, a lump of silver on the cafe's table.
Carol my twin's new found friend and neighbour was there as were her two baby charges.
before i took in hand the silver lump i was to take in hand the camera and set it up for the twin as she recorded for history, the making of the surprise of the year (we are in January).
"right," said the twin, "Yes?" said i, half dazed.
"LIft it!" from a face i could not read so hidden with the camera eyes staring at me.
I lifted the silky silver piece of material and find a wee house.  Cardboard.  Decorated.
"MY house" on the door - flap...dog like.
"Lift it!"  said the twin, "Yes?"
"Lift the roof"
Roof raisers now eh?
and i lift.
a white tape was on the top of the shoebox/house. Decorated...door flap...dog like hall door - my house. named.
I am to lift the tape "Open the box"
Will i or will i not?
I do.
"Well," she said, as i was dazed and stalled.
"Put your fingers in!"
Yikes.
this was a mouse trap size shoe box, you know the type you went to the Pet shop when you were ten and came home with a pair of white mice.
said mice multiplied and got out one early morning as we were about to go to school, a mouse was spotted on top of the rubbish in the garage which nearly saw a rebellion from twins who wanted to stay behind and seek out all white mice and place back in a home...shoe box home or bigger..didnt matter..better than being littered in garage.
I put the fingers in and dazzled took a red ribbon from the box.
nervous like.
Keys!  Keys!
A bit dazed, did i know it was the..
NO..i didnt.
blame the paws that bounced from greystones to the Irish Sea - or Belfast for that!
But then i did!
she had managed to get the house keys early and so i had them in my paws!
we were then to go to - the house.
Ah fun there.
it was wrapped, in purple from one end to the other.
the purple matching wonderfully with the flowers on the bonnet of my van, (no placed basket).
I am to cut the tape (not white) purple.
I do, no vows, just i cut.
and enter - balloons and food and jelly babies just like i was ten and brought home mice - to multiply in the garage!
Where is everyone...moaned the twin.
No, not many came, but did it matter for who came?
the important ones.
we had for starters a smashing arriving car 2012 no less and posh.
OUt stepped the co-ordinator of the helping services who do her proud.
OUt then stepped my older sister who gave me a tad bit of grief over the past few years.
she holds a blazen yellow bunch of tulips full of hopes and a new start.
A smile..a loving smile.
i accept..i give.
Ah but who came that was the icing on the cake?
my new neighbours i had befriended not so long before.
Kathleen the tyrant and her boyfriend Andrew.
all of 88yrs and 90 plus.
they come bearing gifts.
and we had a ball, not many but enough and far better than too many and too stressful and too all over the place.
Lovely images taken by the twin with the programmed camera.
and i named the house...no 8 The Wicket.
Bowled over, bowled out by the wicked for the wicked.
I have wicket -it!
ann