Friday, August 30, 2013

Caught without the teeth in-this time!

Many times since relocating i have wanted 'away with the fairies'


we ARE living in dangerous times.  WE all ARE suffering.
I mean it, we are suffering....

I think this is what can happen, stuffed and on a top shelf as we go mad!

but let me ask you one thing.  When we are finding the road so tough can it be right to trample on others when fed up - er, with your job!

we have a situation now that its quite easy to suddenly be hated in society.
So easy it can take five minutes and last two and a half years!


What i wish to fully understand that in most wars and post wars and even mid wars people are known to watch over each other and do far more protecting then usual than in peace time.

so what has happened this sort of phenomena?
We are at war no?

We are at war with cuts to salaries, cuts to lifestyle and cuts to grants, disability payments and household charges, mortgages and fuel bills all rising and debt is rife.

that equates to War on a personal level to fight to stay alive, to stay fed and warm and to remain sane and honest.

but whats this about trampling all over another, and the usual trampling all over the least able?

because in war times, past that's not the way it was done.
the least came first not last.
they actually did.
Except for the holocaust and i hope that was an exception to the rule.

many times it feels like its creeping back to society that the least able in the collective thinking, the economic thinking are suckers instead of just being what we are - bloody unfortunate.

No, i didn't really have a life style like Cowen and Bertie nor did i attempt to run any country.
i just tried to stay in budget on a pension, which was all my life staying in budget on a pension.

I didn't either defraud, hide, misappropriate funds nor swindle my neighbours.

I used what was mine, and only mine always.

I didn't think that i should have a philosophy of spend now and worry a long mile down the road.

I am a worrier so my thinking doesn't stretch that far.

but what about the whys of why we are picked upon.
so much so that now the pros are telling us what to do, as in how to do up your houses fgs.
more like it change its structure so unbelievably that you will never recognise it as the vision you had set for yourself and your own home.

but what about this two and a half years result of being hated after a five minute spat with a woman who was leaving a house where two women were collapsed in bed and hardly able to cook an egg and when the healthy home help didn't either, you kinda lost the plot a bit.

this send shock waves throughout and suddenly all hell broke lose and still hell is burning, its very hot let me tell you.
all over an egg!  FGS!  I fried but not that fecking egg for sure.

two and a half years later i am brutally 'spent.'
weary and wojus i want out, like.

because we have a policy here that no one solves problems, much.
they sort of linger like underarms without deodorant.

it hadn't felt fair at the time and two and a half years later still doesn't seem fair.

now let me go back to the war situation for a minute.

we are in this sort of WAR.
Well, YES actually we are.

We have less able bodied people in society Yes?
or should that be NO?
Well YES we do, we actually do.

So in this WAR which we are in, can we  not protect rather than demolish and destroy?


You might actually be destroying the best part of humanity here.

Say for instance three fat ladies with disabilities had the most hilarious sense of humour out, and you bash em to bits for some 'odd' reason you then have three miserable fat ladies and rest assured there is nothing worse than three miserable fat ladies.

So why in WAR would you PREFER three fat miserable ladies when you could have three hilarious hoots?

And then if your neighbour too decided to bash the least fortunate because of being grumpy and disgruntled, he or she may bash more, this time skinny men or skinny women or a collective.

so we are now producing so many miserable fat, skinnies and whingers that its insufferable to live amongst.
we now have a rugby scrum with no washed underarms.
its a hell and it stinks to high heaven.

I don't know why we chose this for ourselves or the less able.

Lets all jump on a very big trampoline which will be erected shortly outside the dail.
cos everyone is going to be hopping and jumping the day the DAIL resumes.
Lets try and jump eh or sing (even laugh) collectively and shout, scream and roar as a group, collectively for everyone in this country who either is being grumped at or grumpy or pissed off or hungry, ill, sickened and destroyed by CUTS.

Look at the scales mate...those at the bottom get it worse.
and there lies or stands or sit the disabled and least able.
so it makes sense to do this in an inclusive manner
Will you hold that bloody banner up for the likes of me and my sister who are being trampled on by this government, the f...hse and the grumpies of this land.
and i don't think for a minute i did single handedly bring down this country.
Can you hold that banner in the left hand say and then do a 'foam board' cut out of a wheelchair (symbolic see) in the other hand.
these foam boards are very light.
we even cut a slice with two large red scissors last year.
its nearly two and a half years of THAT too, being a protester.
but i wont give up.
the cuts are biting very very harshly the disabled confraternity.
we actually do need the able bodied people to help us shout out.
its an impossible task realistically getting the disabled people en mass to the dail on this day of the lock out.
so we need the symbolics here in this shambolics of a country.

I think she was asking me a question but i look as if i didn't know the answer, i still don't.

Will you beam a big smile now and cheer up two fat ladies, at least and say 'ah for you i would do anything.  i will be creative and go to the Art & Hobby shop and buy a small or medium size foam board.'
cut out a shape of a wheelchair (symbolic) and stick it up your er, pole?
the pole of the banner FGS.
sorry for being crude at 60yrs, it takes a lot to publicize that we are in desperate times.

Soon it will be the HSE demanding not only a clapped out powered chair back, it will be the false teeth too.

now that doesn't bear thinking of, especially if you want me to smile again.

Tuesday, August 27, 2013

Wheelchair Wheelchair Where art thou?

 my baby 'Ana Chi' eight years old, a dumpling with 'attitude' (she bites, but only those who will attack her mum)!
Ann and Margaret Kennedy, Identical twins with Mitochondrial disease
i want you to meet my dear twin sister Margaret on the right of this image....our campaign for 'forever wheelchairs' has more can we cope with the bangers from the HSE which lose 'bits' on far too frequent a basis, including wheels flying.'
Ah its another day in my lovely country.

i have bags packed and my twins wheelchair is being powered up in the hall.

but the 'head went' last night and i have my balance and tinnitus off Richter thing which no one has bothered to investigate.
given that i have so much wrong with me its frightening.
My one reason to hang on is i am to get to Queen's Square London UK under the overseas treatment fund so i am hoping that the stuff going on for me will be investigated there, cos it wont be here.

Mitochondrial disease is a disease of the Mito.  Mito are the tiny part of each cell which produces 'Energy' and it is failing to convert the food we eat to much needed 'energy', without which our bodies begin to slowly die and we have chronic fatigue for not enough to sustain us is being produced for adequate functioning.

It is a very Rare condition and not easy to diagnose, there is NO specialist in Ireland for mitochondrial disorders.

meanwhile no one, absolutely no one has contacted me about the wheelchair from hell.
remember the one that went into a wall opposite St. Vincent's University Hospital?
no, no one, bar an email to give it back and i would be reassessed.
I have been assessed so don't need the re...part.

my bags packed was for Belfast.  the various railway stations were notified, the sterling was bought, the wheels borrowed.
but too unwell.

there is little point telling any of my Irish consultants this.
little point telling my so called primary care team who think i am a alien from outer space and who don't care about me - how do i know, certainly no one was falling over themselves to come see if i was OK after going into a wall.
and the difference is that twin had her OT up next day when the control panel began to fall away.

er, its fixed or was, but now its falling away again.

my wheelchair had a wheel put back on by the lawnmower outfit down a back street in the town.
but the control knob feel away in my hand so its falling apart bit by bit and this is the 'health and safety' regime now of my government department.
they should be strung up.

you tend to NEED to put out an appeal like this, for choices are few.  Wheel flew on the 29th July, no HSE official has contacted to repair or replace.

i also have rung the neurologist on a daily basis about it, in despair.
he doesn't answer.
but he doesn't answer for my very good friend with generalised dystonia either.
both have been ringing about stuff, pain wheelchairs pain again and getting out of the country.
both now wish for this and are working on this.

OUT of this country both want to get, failing fast are our hopes for care in this small isle knowing its not there and worse, knowing that the disabled and vulnerable will not or cannot stand up and face the shower of shites in the health service including Dr. Reilly about the way they are being treated.

No i am not an isolated case.
how do i know this.
because i keep in with the disability field both as a patient and as one who knows some professionals working in it.
on the ground the suffering is dreadful.
people are banged up in their sheltered accommodation being forgotten.
people are struggling with equipment which a decade ago would be deemed 'not fit for purpose' not only that, they are not being repaired.

people are constantly being demonised for protesting at all levels and this is the worst and most frightening aspect of the disabled in Ireland.

No one is fighting for us.
No one cares enough to bring the banner out and fight.
the Dail resumes shortly my friends.
my protest will begin in earnest if i am well enough.
Now for my famous 'WHEELS APPEAL"  i had to do this!
many have not liked this on a personal level.
i have further alienated myself from the class of my family who think this is an utter disgrace.
let me say it isn't a disgrace.

what it IS, its a disgrace i do have to do this.
but many are all over the country people have to run the charity field.
there is no where left to turn.
creating two wheelchairs for very sick ladies of 60 is not easy in a health service that cannot provide.
creating a van with a bit of comfort, not luxury by any means but comfort for muscle wasting condition is not something i can do having been ill and disabled most of my adult life.

but i am the banner of the 'independent living' movement, i want to move...not be banged up behind four walls and live out in quiet despair.

i want to 'experience' the move, and the moving.
thus when the legs and muscles begin to fail both twin and i i think up this creative lateral, outside the box Movement Appeal.
and wouldn't you say Wheels moving about is the NAME, of being alive and purposeful.
not shacked up and shackled against one's will.

so anyone who reads this please 'pass on', maybe out there the giving of such will not 'hurt' too much, maybe someone has the means, to help even a little.

remember what the wren said.
he was wise, but it could have been a SHE but whatever IT was a wise wee bird.

'every little drop counts, said the wren when he pee'd in the sea!

Thursday, August 22, 2013

Victorian bone shaker alive and well and living in Bray

Well i darn knew that it was a bucket on wheels.
metal bucket on wheels, which often loses parts.

thus far it has lost a bolt, a wheel and a control knob.
In that order.

it has been mended by a lawnmower repair guy down a back street of a sleepy village.

these items are supposed to be the latest technology for the disabled.

ahh, the cat outta bag sooner than later...the bone shaker is non other than a wheelchair, powered and badly.

the make is undetermined.  Given the fact my twin's is a multipack, multimake lego style gizmo, mine is possibly the same.
the part with the name on it could be the last vestige of the actual body part that is correct.
the rest being add ons, or in my case temporary add ons.

bone shakers in victorian times were called that because the wheels were metal and sent shock waves up your arse...through the spine to the head, which strangly probably remained attached.
but also possibly gave you a bloody blinder of a headache.
with eye balls bouncing around their sockets and ladies struggling to make sure their long dresses didnt catch in the spokes or chains, it meant collapsed state at the end of a very short journey.
the wheels being solid provided no suspension whatsoever.
the tyres of my gizmo are solid, rock solid so bounce i did, believe me i bounced.
the eyes also bounced and winched as i frowned and cried out at each bump i went over and the divetts in the paving were alarmingly unexpected.
when they came i not only bounced but lurched forward in the seat.

so in description we had it in one - today, 2013.
Bray town.

I made a short trip, journey and stroll on wheels like non other.
even the paving was an echo of past times, bumpy and broken (they were working on a large stretch of the main street), noisy too.

(the headache is beginning).

the sun was shining - this was a day not meant for me and i had discovered quickly it was chosen badly, very badly.
the glare was agony and the heat not nice.

what made me do this was the arrival of postcard promotions for 'the wheels appeal'  this appeal is to foster enthusiasm in the poplace to part with cash for funding aaaah, a  new wheelchair for two and a van to put em in.
yes, cos i cannot 'do' all this anymore.
the van is also a bucket which you rattle around in, the lowest rated vehicle in its class of that tv prog over on the beeb.
and it feels it and you steer it as if driving a tank.
we felt, the twin and i, that needs must and a stance of bravery did not mean driving the bloody contraptions we presently have but holding the head up and with an attitude of 'go for it' bravery a fundraiser for non other than US, us with the neurodegenerative disorder we never wanted, just like boneshakers.

the enthusiasm got the better of me today as i drove to bray and parked the van (thank god outside an italian coffee shop), i then took my less than state of the art powered chair out of the back of this van and sat in it.
i started forth.
the paving on quinsborough road is actually nice and smooth, its also flat.
my machine barely makes any slope at all and has me seriously worried as i approach them.
so all was well for a while.
I even bought a bum bag in a charity shop for 1e.

how many postcards did i part with.
a handful in the book shop as i was making back down the town.
as i approached the main street trouble started.
the sun.
i made for the shady side of the street, Wrong ann wrong.
they were drilling that side, but maybe i hadnt noticed this.
once on it was hard to get off!
i bucketed and banged along with the ouch and ah and oooh's aplenty.
and the lurching of body, rolling of eyes, cracking of spine and jerking of head, hands, legs and any other body part that hit the mainstreet this day.
half way up the cool side (only in regard being shaded) i found i couldnt get off!
the decision to bail out was not an option.
i drove the thing onwards and upwards, until i began to sweat.
my whole modis operande was to get back to the van.
but i couldnt get off this pavement.
i journeyed on to try find those dips in the side of the pavement which allowed an exit.
i found one.
the road was busy and the cars looked huge from the seat of my bone shaker.
i went for it, drove in front of a stopped car in heavy traffic and wove up a bit again before i could come down a bit then.
i drove.
people were everywhere.
and i was hot.
i bounced back to the van but the enthusiasm which brought me out was gone.
passing a book shop i decided i would be a failure in this enterprise if i didnt drop down some cards on someones counter.
i chose hurriedly the books.
the man behind the counter was gorgous.
i think a student.
he took a bundle and i half giggled in pain and shock but defo i half giggled as i handed the promotion over to him.
i got to the van but was shaking so badly i tried to leave the chair by the coffee shop.
i peeled myself out of it.
i could not stand up.
into the shop i heaved myself and sat down cursing mighty.
'a large cappacino and one of those nice cakes please'.
i then rang my twin in rage.
How on earth can the HSE provide such awful items for seriously unwell and disabled people i asked her bewildered.
i honestly didnt think i would be able to drive home.
i was in bits.
after the coffee i had to make some kinda move home.
so i went out to do this.
omg the pain and the effort.
i guided the 'monster' into the van and slammed the doors shut.
cursing i got into drivers seat and set off in the direction of the village with the lawnmower repair man.
i got home and cursed yet again.
i did the horizontal.
i am so angry that anyone should think it ok to hand over such a machine to a sick woman.

it may cut costs to hand out a lego version of a bone shaker but it will cost even more if this lady ever goes back into a wall like only ten days ago.

my day is now documented.
my trip was meant to be as it reinforced my drive to pursue the campaign for better apparatus for people, us crips who need powered chairs and a van to put them in to take them to destination point.
my enthusiasm increased for one and decreased for the other, dramatically.
Bray  may have to do without me for a while.
i vowed never to put myself throught that again.


Monday, August 19, 2013

it isnt easy being a HSE twin

 This is NOT the offending chihuahua of the Tail below!
it isn't easy being the half of a 'liked' favoured twin, when you are dealing with the HSe.

I want to say here, my twin is not the one to blame.
She is innocent of any crime! So am I, fgs!

You would never know that in Holy Ireland when the HSE is in the top seat of the medical community care provision you are rightly f...if the HSE doesn't like you!

what irks me is and saddens me is the fact they split us up the way they do which hurts both twins very badly.
because every time they throw a dart, arrow, sword through my heart they do the same to my twin.

do not be mistaken about the HSE in ireland.
it is not a benevolent fund by any stretch of the imagination.

they are though the HSE, the Health Service executive.
note the exec in lower case.

it is and they are the people behind the provision of care, in the community and elsewhere to those least able.

My twin and i are increasingly less able.

Two and a half years ago, three incidents occurred.
I am afraid i was unfortunate to be at the helm of all.

the first was my chihuahua who is old, bit the new Home help before i was able to catch her when this person came to the hall door for the first time.

This is the Chihuahua offender - Old and now FAT!

now chihuahuas do not have big teeth and mine were nearly all gone, she is elderly and they simply rot away when they are small.

nonetheless she bit the home help!
But then i did the same!

this particular home help was about to leave the house.  my twin and i were in bed and i got up around 1am to see she was leaving.
but also she was leaving without providing even a cuppa for either twin nor i.

i barked.
she had not even put on some toast, kettle nor an egg!

you too would bark when you had shifted out of your county and was very ill, (the reason we had home help in the first place)!  To HELP, see.
So two down and one to go.

Another doggy incident.

this particular dog got out!
i screamed and roared for the home help to help me get this young puppy dog off the road where the cars were screaming by.
i dragged this dog in.
then my home help walked out.

i, since then have been labelled.
it is influencing my services in a major way and nothing is improving in all of two and a half years.

what it does to be 'outted' to the psyche doesn't bear thinking about.
you are in effect outted and left to fend alone.

you do not feel able to ring anyone in the community care centre if you are sad, depressed or lonely in your new home.

you are not able to even consider dropping in for they seem to all hide.

it was a beautiful day, but was my twin feeling poorly or lonely as we attempted a very short walk today?

my label is very extreme and very untrue. We are in Ireland, Ireland doesn't do anything fast.
it makes studies, reports and more reports.
it investigates then investigates the investigations.
but it doesn't take decisions easily.
they consult and consult and consult.
paper mountains begin to appear.
 More and more people are added to the intrigue.

 This leaves identical twin sisters one getting more services and a kinder approach and the other is getting, er, shit.

i am used to being treated badly.
it happened in the family of origin too.
i came to the rescue of the twin to try and get another relative off her land. (black woolly dog)?
I had been out of hospital less than three hours, and it was eight am.
this relative refused to move so i called the police.
i did!  i don't regret it, i called when i felt threatened and so i called the police.

but in doing so, i was outted.
and still outted.
how many years after?

incredible ireland doesn't also give you a chance.
You make not a mistake, but if you make a decision and you act means, if they do not like this decision they bar then that person from all services, and all family functions, because that is what happened.

we are talking here now not money nor doing anything terribly wrong, in the scheme of things.
but ireland likes to make a mountain out of a mole hill.
you know that yourselves.

How easily one member of a family can get all the shit that others cannot either hold, use or cope with.
in ireland there are more scape goats then on Dalkey island for sure.
we did it in the 50's which leaves a film documentary behind for all to rediscover the cruel facts of holy ireland, the film is call 'behind these walls.' it was created by Mary Raftery, deceased.

So outted am i in my new place i don't have a gp here, but i can sit in the car park of my twin's and wait to pick her up after an appointment, but i have to travel to the next town in order to see a doctor!  but according to another doctor saying on a file, you have to have a gp within three miles of where you live....I don't!
its crazy.
it isn't funny.
the worst being the impact on the relationship between the twins.
one knows the other is suffering, and the other knows the other is suffering because the other is suffering.
this has been caused by the HSE who has caused a tsunami effect of paper and accusations and stigma and investigations.
with the family i think there is an easing of caution but i only think this, i was ignored by the seafront with my twin the other day, it wasn't nice for either of us.  (I am awaiting developments of whether or not that was a snub or not, it looked like a snub to both of us, but waiting to see if they either apologise, explain or invite us to something nice, still waiting).
but stigma, difference, disability etc in Ireland means that you are worthless.
you are not even considered for making a decision, especially ones they don't like.

you cannot call our country a democracy if it refuses free thinking and decision making in the parliament and has the capacity to slice a poor individual who is so sick she needs the hse unfortunately, but the HSE has decided she is a witch and needs to be avoided at all costs, because a chihuahua with no teeth got to a home help before the owner.
because the owner barked at the home help for not cooking a poached egg.
and for barking at home help in an attempt to get a wild and woolly young black dog off the street.

still outted am i!
and not an incident like these before or since, EVER!
how daft is that.
of the relative incident, i was very sick and was coming to grips with disability and just out of hospital A&E, in fact when summoned to help my twin, and help my twin i did, because thats what she had asked me to do.
but you don;t get no thanks for it, when you call the police on a relative in Ireland you are then doomed to coventry for the rest of your useless, disabled life.

with the HSE it has left two very depressed ladies, sitting in a new county and regretting the move megga.
two women who feel abandoned to chaos and lonliness by both family and hse with two clapped out wheelchairs, one clapped out scooter and twins, very clapped out.
we are not clapping in love for the HSE.

but then this democracy is still writing reports and considering their next move, which will never be fast.
in the meantime the HSE is allowing two women suffer.

My Maggie Mai (here on the right is an 'Irish Therapy Dog' she tries to lessen the suffering for more than for me.  she is a role  model and a blessing.

i mean allowing us suffer, and these are called our Health Service Exec.
They have the capacity to stop it all NOW, but they are not, naw.
we are in the Irish Times tomorrow tuesday.

Tuesday, August 13, 2013

disability is a stat and a pop up!

Living in Ireland...... After the Crash......

living with Mitochondrial disease

 Bashing up disabled people and considering us a drain to society is not compatible with the idea of ‘society’ in the first place.

myself and my dear twin sister 'dr. raging wheels.' 

Many government ministers are well aware that if you put us up against a wall and shoot us it will leave thousands unemployed.

If you shoot also the many in social housing as people who are eating into the economic pot you also are losing many civil servants.

To get rid of us is not that easy.
For we pop up again and again thoughout the three score year and ten.

We are the daughters of a loving father and mother.
The sisters of a group of children who are being brought up and edcuated to be part of a society of caring.
We also may be the husbands or wives of those who are doing good to the society already and may in fact have created little children who in turn will create more for the exchequer once their time in the educational system is done.

If you selectively do away with us you are then depriving those who are healthy without food on the table.

For you have effectively decommissioned the professional who grew in education, status and skill to provide for us.
We are talking about the Occupational Therapists, the Physiotherapist, Orthotists, the psychologists and also Social workers and the Social Service system manned by many thousand of civil servants.

The ripple effect is known and there to be seen and is realised that disabled people actually keep the rest of a good proportion of society in food and nourishment.

What the cuts are doing to me on a personal level

There is only one way to explain the benefits we offer the healthy by describing only part of my living but in turn we deserve more than hatred and grief.
 I awaken each morning after usually a ghastly
                  night of pain and discomfort.
actually i still have no summer shoes! 
August 2013!

I ache all over, my eyes and mouth are dry as paper.
My limbs are stiff and weighty and my joints do not work.
There are few teeth left in my mouth and my two hearing aids are on the table before me.
My spectacles are waiting for me to see what time, this time i am either fortunate to be alive or less fortunate.  Its a matter of perception and belief in the idea of living.

           I believe in living – with a vengeance.

 Sarah Henderson bringing her whippets to see me and i speak with dystonic posturing.
The immediate problems for me are –activate, medicate, work on the body that now has awoken in pain to pretend to do the Art of Living.
Stretching and loosening up alone is the hardest part.
Putting in the aids then is about the least stressful, if you do not have an ear infection and i get many of these.  They would not be the most efficient on the market and in fact they dont make it that much difference to me.  I have lost 70% of my hearing capacity.  They amplify yes, but they are not fine tuned as the more expensive models would be.
I have though extreme problems with otitis media.

I step outside the confines of warmth and stretch out hands for the shoes.
These, now in summer are summer shoes.
My feet are deformed from birth and the lower legs are showing signs of quite severe muscle wastage.  I have shortened achilles tendon and one foot is a good size bigger than the other.  I also have one leg shorter than the other.
The shoes are about as important as they get.

All people walk and walking is an act which is amazing, it separates us from the ape and chimp who still depend on the top arms to manover.
But walking upright means that weight of the whole body is put on the wee end feet.

It is no mean feat.
If the shoes for a deformity of the feet are not the best we can manage now with our sophisticated society and science then the body in turn is ruined.
It is ruined irreparibly.
My shoes were denied me after 2008.
So i have been trying to make do with shoes now that are floppy, with holes in the soles and with soles that decide they wish to depart from the life and job it has been given.
They too are flapping.

They will get stuck down this day instantly.

Teeth will be put in but with the economic cuts they are loosened and so i have to wait until the dental hospital has funding to reline my dentures and allow me eat decently without struggle.
I do have sjogrens syndrome which means my saliva glands are dying.
If i do not do the chomping well i can choke to death.
The teeth are more than that, they control how the food is administered to the stomach.
I have nearly choked a few times now.

I will then walk, i am in so much pain...the achilles now are so damaged from lack of support that they cannot be repaired at this stage.
They are only being attended to now after eighteen months of begging for treatment and longer for shoes that will cope with the feet deformities.
The amount of phone calls, begging letters and tears not to mention the amount of times health officials and the company involved have put the phone down on me would take up a complete shelf on some HSE office

I will also need that injection.  Crohns disease has lopped out my ileum where vit b12 is absorbed.
So this now has to be administered by the district nurse.
There was a fight for a while to do this myself as i was getting badly administered jabs.
But then i was told the gp would do it, but the gp told me he would not.
So i get them by the nurse.  Some jabs are better than others, it all depends on their mood.

An appointment at the doctor will tell me there is no:
Gluten free food products now on the medical card prescription.
There are no vitamin products either for boosting my energy because
He cannot effect change for the fact the cut backs have meant that i have had no physiotherapy since January.
I have dystonia and muscle wasting and a bent spinal column with crumbling discs in the neck and other problems that only physiotherapy can ease.
I am on morphine so badly need this work on the muscles.
He cannot effect change to bring forward any appointments and being on lists somewhere.  i have a echocardiagram in February 2014, so i hope that i will not have a heart attack before this.
He cannot get me Respite after such a huge  move for two very ill people who did a move out of the county all because of bad administration of housing stock for a lady who has spent all her days in social housing.
We had to shift to safety which has led to PTSD and its not pleasant at all to feel so adrift, but then is it pleasant to be taunted and have a child shoot at you?
It isnt.
So we now feel like war victims.

I struggle and fight to retain a clapped out wheelchair which the HSE in their wisdom say gave  to me by mistake!
So fearful i will be left with nothing i use a machine that has already lost a wheel in action putting me into a wall!
I have lost bits off it and also the control knob when i was taking this out of an adapted van yesterday.

It doesnt end with the wheelchair.
In order to live in this country you will at some point alienate yourself with a large group of care givers.
The HSE who in turn will call you a pathological individual for which they have workshops to learn how to deal with a so called ‘atypical behaviour’
I have to remind the HSE, its probably very typical after what they put us through.

The waiting lists are long.
I have it for
Hearing aid
And the fight is mighty.
And so much more.

The waiting for emg, echocardiagram and other is even worse.
The doctor will only do bloods once in a blue moon and protest over doing other types of testing.

We have a system which is taking from us at the bottom and yet doing nothing to put good management at the top.
Another factor of huge note here -i may add- they are too keen in fact to tell you what to do with your own property, as they nearly forced me to have a wetroom for a bathroom in my own private home.

This is the Bath i managed to save! YIPPEEEE!

(I am still looking into the legality of that!)  the HSE are now taking over your life and saying how you live it, demand how you live it.
Even if you protest.
Like how you want your home to look, how you want to use your home as a creative individual and in severe pain, removing everything for the hole in the ground, prematurely is wrong.
Doing so against the owners wishes is also wrong.
She has a mind to decision making and she has made it future planning decisions!
The HSE is not in charge here, I am.

Of my home.

So you are spending all your days phoning up the various departments, getting td’s on your side and not having a life at all at all.

I hate it.
I dont know how i can change the fight.
Change it to peace and quite and purposeful engagement as once before.
Instead of being something pathological for the HSE.
But that i am.

This is an open decree to both the government and the general population.
I am disabled and also disabled by birth as well.
But i am my fathers beloved child, as is my twin sister.
But i could also be the Taoiseach’s child and the minister for Health, who has a grown up man working purposefully with a challenging condition, as a doctor’s son he would have got the help he so needed.

Not so myself and twin who have no one.
Except our wit, mind and pink bowler hats.

If you take all the professionals away from living purposefully and all the disabled people who are living according to yourselves a ‘wasted life’ then society is gone, caput.
We will have no variety.
No choice
No dynamic population.
We may have a country full of IT specialists only.
And banks for the bit of exchange.

What will happen if the banker gets sick or his son does
What will happen if the IT worker is sick and has a family with an out of work social worker for a wife?

What do you do then?
Do you get the gun?

When i weep over the pain of the achilles and the lack of support and weep over the harassment by the HSE taking a wheelchair back.
I ask society and the top thinkers and officials.
“What on earth did i do to deserve grovelling to such an extent?”
Surely to god its written in the constitution that i have my right to life.
Not right to the breath i take without the life i can have, that is.

When you try saving yourselves you are in fact killing yourselves.
Because when you have finished at the bottom then you have to start working upwards because cutting back is not going to impinge on deficit.
Working is, and the creation of jobs is.
Not telling people they cannot work in this country because they are cutting back on provision of care.

In real terms – you are shooting yourself in the foot.
It will Hurt, rest assured, it will hurt horribly.
I know.
When i am gone, one more disabled child will pop up in Ireland, statistically this is so!  You have not got rid of a preceived problem, but created more instead.

Saturday, August 10, 2013

researching stigma

it only takes a mini research project to see the world of the 50's so blantantly documented by the late Mary Raftery has never gone away.
we have a defo 'behind these walls' attitude still and i wonder when we will come out as modern.

Day after day combing medical files leave two women aghast at 'ignorance'.
How can a file present as 'the real mccoy when a  note on team meeting says that 'feeding aids were discussed and will be sourced'
its not a feeding tube but a spoon!
'a previous home help was bitten by a dog'
no not an rothweiler but no other than a chihuahua with very few teeth leaving no marks at all!

Just get it right, man, i say.

you cannot have clear reporting, with such language.
but i only place here the really banal, it does get far worse and the attitudes and collective thinking comes across as almost a desire for evidence when no evidence exists, so it goes round in innuendo and supposition and kinda word usage that both could be best replaced, done without or the users please go back to college!

We have cases within HSE documentation that are factually untruths.
the HSE is known for this and i wouldn't be the first to lay claim to have discovered it.
pages and pages of notes on one individual has two women sitting opposite each other studying and each shaking their heads in disbelief.

When one finds a flaw, the other finds another a few pages on.
when one finds something so illuminating as to change OUR perception of a situation to such a degree the typist has to get back to the review on that part and add or subtract.
when this is done we see a compete and utter change in the document.

such is the astounding revelations therein.

we are not talking about a criminal trial here.
we are trying to make sense of it all.
the only thing we cannot make sense of is HOW on EARTH can these ever pass as the truth!

today we found stuff that really changed our views.

when we then relax and chat about the hours spend over these today we say to ourselves, if this actually can happen in such an innoxuous case as ours, how much worse can it be in so many others.

also alarming is, Ireland is so small that pockets can be created whereby professionals are interlinked like a chain and the individual trying to find a way out can never do so.

when you find that a Doctor has let it known on the charts that under a medical card scheme the patient can only have a doctor within three miles of their home, yet none within that would have the individual we are examining for love nor money and sure as hell the poor person has to travel far beyond.

why so?
tell me why so?
a picture is building up of why so?
and it is alarming - mary raftery alarming.
and she would be, if she was alive today.

how we need and miss such a person.
Mary you went so soon long before your time.  I need you here so may your spirit help us untangle this mess.

Diplomatic endeavours huh?

       Introducing my companion for life - Ana Chi 
Yesterday was the day the two sides faced each other.
It was not exactly a shaking of hands but a realization on both parts - we think, only 'think!'
that the obscene dynamics of our health service providers to an individual had totally got out of hand.
someone somewhere had lost the run of themselves.
As a duo, my twin and i...she of Dr. Raging Wheels fame believe that a 'poached egg' and a 'woolly dog' did not amount to almost two years of sustained, inclusive and barbaric character assassination and labelling.
It did not warrant team meetings of all the major heads of (state)departments to ask and to discuss a matter of almost "What shall we do about Maria."
It did not warrant the suggestions that workshops would be held in the Health Centre to almost warn/teach and instruct from the top levels "what to do with Maria' and 'communication disconnect!'

Remember we are talking about a woman who challenged SLANDER of the most severe kind.
Remember that woman had left her home single handedly helped only by a disabled twin and she too sick, disabled, warn down and warn out and to shout at a provider of help that it wasn't on to leave twins, both in bed without providing even as much as a poached egg and walk out the door after playing for the hour in soap suds.

(that my friends i call 'the poached egg incident).'
the other 'incident' also saw, the same woman (oh that it would have been someone else here), scream and shout to attract her home helps to come out and try and get a woolly young dog off the road, as she was in serious danger of being DEAD MEAT!'

Thats all that happened in over two and a half years.
but that started a chain reaction of the highest order.

Who in this world can deal with having her name besmirched and denegrated.
being called this that and whatever without retaliation?
No one sits down under a label that is so derogatory it demanded withdrawal and an apology.  If not litigation!

No one will allow, if they are of sound mind, anyone, even absolute strangers call her names that are not true.
Put untruths into the public domain and run rampant through the health service that we have a problem with 'Maria!'

I stood up and asked all the above.
It has taken over one and three quarters of a year to demand this, and it has not happened yet.
It has taken one and and three quarters of a year of severe anquish, trauma (do they not think i had enough, losing my county fgs) and pain.
it saw a further deterioration in my physical health and it saw Insomnia set in so badly that i cannot get out of its grip.

Night after night wondering and screaming inside about INJUSTICE.
I still cannot understand the amount of time (tax payers money by the way`), the amount of paperwork, the amount of meetings, discussions, more paperwork and a trail of devastation to a person who was outside this professional confrontations and had to remain so and listen and hear the dreadful stuff bandied from department to department.

I say they wrote a bible on this.
they sure were the Matthew, Mark Luke and John.
it was evil.
just evil.
there isn't a better word.
there can be no softly softly approach to horrendous attitude and infiltration of inuendo to all who now are my care givers.

          I still want my name cleared.

Yesterday maybe was a peak of agreement.
that this had to sTOP, that Maria had to LIVE and let live.
that she should have appropiate wheelchair for her disability which doesn't lose a wheel on the way to the neurologist.
the acting head of the division has agreed.

this is good news.
this is the news i have been waiting for so long.

a year and a half or more after a poached egg incident and a woolly dog incident.

The labelling has to go.
there has been no further incidents.
No effort was made that there be no further incidents.
Maria was tired and exhausted and all over the place when she came down here.
so was a woolly dog.
We both have lived to tell the 'tail.'
but i want now to LIVE with an apology and an agreement - on paper, that the team will ensure that they get to know Maria, play on the same hymn sheet and all become a happy family by the lake.
will it happen?

Tuesday, August 6, 2013

when it starts getting nasty and bitter

the disappointment of it all at 60yrs of age causes me to write this blog tonight.

it wouldn\t have taken much to step up to them steps and say the friendly word 'hello.'

it didn't happen.

I saw one white haired person consider the situation with the brother who is also white haired but they just moved on and away, the deliberation was not long and it was perceived by us as the basic snub and obviously so.

one cheery face looked up with a gigantic wave and an effort was made to meet with us.

unfortunately the meal was over and we were out the door when we hit upon the only walker of the three who stayed to say that important 'hello' that important greeting, if only for that and nothing else.

we detected it was only that.
we tried to encourage engagement of a kind to come visit our new homes, it wasn't received that enthusiastically for the rhetoric of 'oh our stay is well mapped out by others.'
(nothing is written in stone). we feel.

we felt so lost so we did.
knowingly lost amongst those who we had considered one of 'us.'

we were and realised we are not one of them.

we are and we do understand this well...the flotsam.  the bits that no one really wants to be hung around with.
Or hung around their necks either.
the ones that are profoundly disturbing to be around.
i believe for one reason only we are disturbing to be around. we say it as it is and we have always done this.
it isn't much liked and i guess most wouldn't tolerate it for long either.

what we cannot cope with is the denial that we are kin.
the denial we are sick and disabled and its genetic and they have actually much to fear for the offspring of the rest of the decades ahead, when we are long gone.
what has 'got us' will 'get them!'  but they fail to see the enormity of it or the impact it presently has on us and could and will have on the next generation.

We are intrinsically linked.
We cannot be that forgotten even if they wished or wanted.
we will be remembered for the genetics bit if nothing else.

today i composed my funeral list and this isn't morbid or creepy.
what would be creepy would be the weeps and the nodding of heads on wrinkly necks and the younger generation standing by not really caring that much of a toss.
i would be sickened and turn and tap the inside of the casket.  knock, knock but i hear you all out there.
'ah she had a tough life all the same.'
'yes, she did.'
'she was her own worst enemy'
Ah she was.
but she was SO talented and creative.
yes she was.
Poor woman.
Its awful really when you think of it, how it all ended for her?
It is you know, you would never believe it would you.
she was difficult.
without a doubt she was, do you remember...ah i do, i remember that, and how we tried to help her then...

i am now suffering the restless legs i experienced when alive.
i am crashing around in the dark there and yearning to get out and about and trash the fecking lot who are going to place this coffin in the ground and bless themselves, toss some dirt on top of me and fling some plucked layby flowers onto the lid, the one with the brass cross.

yes, i see it all.
but it wont happen for the list will be made and i don't want them doing any such thing near any such casket and the hypocrisy of believing anything they ever did amounted to the 'much needed help' they whisper about and nod them wrinkly necks and the flap of the hens and cockerels.

i think i will be burnt.
fried, and cast out...which is only proper.

I felt very low today.
so did the twin sister.
it isnt much liked that we plan a fundraiser for the new van and the new wheelchairs, cos of course we show them up for what they are.
mean and grasping and fecking selfish.

If we put out there an account name and address so that we can get about together and try and enjoy our lives we are seen then as showing them up in some kind of fashion.

we would be showing them up in some kind of fashion.
they help us not a jot but could do and could shine with all if they partook and behaved half decently and rattled the few boxes and said 'hey we helping the two of them crips out there, who need the van and the chairs even to do the basics.
you do get kudos for shaking boxes, carrying the flag of the crips and claiming them as one of your own, not blaming them for that position in life.

everyone loves a person who can shine above the rest and show they care.
but all really that kind of stuff is lost on my lot.
they think that too is beneath them.
they never shaked a box anywhere, but might do if it brought even more notice to themselves.

in this instance its called honor glorified, the relatives are taking notice of the least able amongst them and there would be the words, 'fair do's' to them you know'
everyone loves this and everyone benefits, everyone feels the glow of the connectiveness of purpose.
but if, if you are mean and small minded you think of the embarrassment of how part of kit and kin could do such a thing.

to be sure the name will be writ in the bank tomorra.
and the bill board half paid for already where i shall post the bill.
the one which says Ann needs a if you can...sort of thing.

blast the one who think this is going to effect 'image' going to bring about 'shame and embarrassment' that we, of all the family should do such a thing.

but do it we must. we are not doing it to save the money we have in some bank account.
there isnt any in any bank account.
the very reason we are doing this.

we NEED the help of a suitable van and two suitable wheelchairs, not ones where the wheels fall off and leave one sister embedded in the wall on the way to the neurologist.

and that is why more will walk on by i guess within this incredibly law abiding family of ours.

i am not picking on anyone in particular, which is a good thing.
but what i felt today of the disconnect has made me react in a fashion that is true.  If i am not in, then why should i be so loyal fgs?
what holds me there in that place of reverence for my own, if they disown?

so we were crushed with disappointment that our kindred spirits were just that, ghosts and spirits, of maybe time past.
i am sure glad that day is over, this day is over.

I am not ashamed of disability and not ashamed of stating thats its far too hard to live with it, when your own are not that supportive at all at all.
so unsupportive they walk by and dont even think twice much about doing so.
walk on i say.
if we evoke such a response, maybe that is the better option.
we felt crushed though, as if left on the side lines with our chips and dead fish.
take care, the knocks will be heard from dark casket boxes if anyone puts me in them things.
i wont be afraid to wake half of you up.