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

        i have MITOCHRONDRIAL DISEASE.

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

Wheelchair

Shoes

Dentures

Hearing aid

And the fight is mighty.

Physiotherapy

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.

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.
Accusations.
Slander

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.
SHE HAS SAID IT WILL STOP!

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?
I say, 'WATCH THIS SPACE!.

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.
yep.

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 van..help 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.

A very HSE day

it was a difficult day.

I was SO tired as the HSE official and a Council official plus twin, plus disab advocate and surveyor stood in my new home yesterday to discuss the merits of the rebuild aka adaptation grant.

Why oh why does a man have to stand over you when you so tired you cannot even be as tall as him (them) and say such things as 'why did you not have a project manager?'
'Why did you get such a door?'

of the first - no money, does it occur to anyone at all, in 60yrs of life, i hardly ever worked and when you are ill and get a grant (i asked for a bit extra for just that, a project manager)! and when you are ill and have not been a brickie nor a glazier nor an architect nor a builder, how on earth do i know anything about patio doors?

I do know aesthetically what i would wish for, but thats about it.

so that part of the day was fraught, leading to knackerland.
After that fraught day i proceeded that eve to wallpaper the back wall of the bedroom, change the colour throws on the bed and sofa to try, attempt squeeze some juice of enthusiasm from some place.
result, even more knackered and so to bed, 1am.

the day also started badly.
no bread for my lovely spanish lady which upset me cos i was too tired yesterday to go to bank and go get money.
no money in the tank for petrol which meant a diversion on the way to town at first possible chance to get a post office open.
i had to aim for that as i then would have been too late for the dentist.
this took me back to where i had come before i hit G.....
and once on the sniff of familiarity i burst into tears and that finished off today too!
Again the angst set in against one body of our care service, the HSE.
the very HSE who effectively destroyed my life as i know it, in the only way the HSE know how to do this.
I believe they do it with such finesse and with such flourish that it had to be honed to perfection in other peoples' lives before i was so unfortunate to meet the HSE!

You meet the HSE through Health.
usually BAD health, they come on board in a sort of invasive way.  You are referred to the HSE and when very sick they refer you to  many in the HSE, in fact the Health Service IS the HSE!

and soon you are consumed and denied even a life due to the HSE and being flooded, so that you bloody drown and are effectively taken over.

My life ended when the very first HSE person entered my life in my own home.
she walked into my life and walked out, leaving a trail of devastation.
this included managing to pursuade me to move out of an apartment and area i utterly adored.
At first i told her 'no way, i was leaving in a box'
after that she 'worked on me.'

so much so i left.
not only there but the whole county. Why did i leave the county?  i was allocated a dangerous small social housing unit that wasnt first inspected by the HSE as to its suitability and in the end i had children shoot at me and alcoholic men jump walls to attack me when the council spray painted out the parking bays of men who had lived in this area for over 14yrs, for a tosh that is me... as this bay was needed for a person with a disability who has a van that is adapted.
and there were messages to the HSE.
many!
and they all advised the famous HSE about how i dealt with change, (badly.)
how i needed certain things, (i did).
and all these messages were from consultants.
and all to a letter were either ignored, or at worst lost in the paperwork of HSE which has gone out of control, pretty much like the HSe.
at team meetings which were held in urgency when it went pear shaped found even the social worker not penning the fact that someone far more superior in status and experience was actually present in the room!  That person being my twin sister!  A social worker trainer in another country and with a doctorate, she was sitting there at his side and not even noted as present on that day at that team meeting.  That, my friends is as bad as it gets.

the day that Reilly says in the Dail that the HSE is gone, will be the day i will crack champagne over the heads of those who destroyed my life

it will be as jubilant as the George of Cambridge.
just as.
the dynasty has ended.
the dictatorship has been broken.
the king has lost his head and humpty dumpty will never be put together again.

thats the day i hope will come in my lifetime.

Also i shall digress for a minute, but not long.

I also want to see the day that disabled people stand up and be counted.
because i believe they are crushed and squashed like i was and have been.
One thing i will not do, is name it.
the abuse of the sick.
and I name it in and within the HSE.

I also want everyone who has to struggle ill health, struggle disability and struggle disadvantage, to not grovel for needs to be met, but to stand tall with dignity and face full frontal all who want to put you down and crush rather than lift up.
Anyone who denies another freedom to enjoy the life they were and are entitled to shall be named, in full.
there are so many within this organisation who stood by and let what happened me happen. i have to say as a collective entity they are equal in their efforts to not uphold the values which is in the job descriptions they hold.
the denial of their duty reeks through the pages of documents and how they manage to lift the phone and get the votes of colleagues so their backs and fronts are covered and so its an infected collective disease.
the HSE.

If the HSE feel and believe that i have gone away they are very much mistaken.
the pink bowler howler rules ok.
and for sure.
the pink bowler will not be hung up like old rugby boots until i can say i have been vindicated.
the day that justice is done for one individual who cruelly met up with the HSe and was put down by the HSE will be the day, a beginning of a routing of a sort.
the beginning of one individual who has enabled others to start their own personal battles for their needs to be met.
not grovelling.
not being shoved into the spot of 'Its all your fault!'
this is a factor of dynamic the HSE are particularly good at.
turning things askew.
but the wheels are turning.
and i believe i have it beneath the bowler hat, pink in colour, supported with the other pink bowler to say to the HSE - This is one individual you cannot mess around with.

I do have supporters.
there are still many who see me as kind, though fragile.
kind and gentle though at times too vocal, as in vocalizing distress.
kind and giving, and i do this, i believe in spades.
i am also creative, practical and inventive.
you learn that by being poverty stricken and never leaving that zone either.

one day it will be the part of who i am that is fully appreciated.
but will only be so once the HSE departs from their format of 'slash and burn' tactics.
because the HSE is so powerful it does destroy, and has destroyed.
look to the annuals of how they treat those of the children of this state who have been unfortunate enough to be cared for the state.
what happened, many are now - DEAD before they have reached the age of 21yrs old.

and that is directly due to lack of professionalism, of - THE HSE.

time is not on my side for diplomacy.
there is no sweet talking from me, because we have not the decade left to sort stuff and things are slow enough to get done in this country.
I have gone directly to the jugular here.
i have had to because, time my friends.

who it be any better anyway if i stated in a sealed and closed letter "to whom it concerned, I am writing to the HSE to kindly request that they be kind to me."
i doubt that would work.
WE ARE kind is their answer and so be it.
their unkindness has to be dealt with in this format.
the unkind way.
for now.
Do i know the HSE read this.
i guess some do peek in.
i guess they do.

To this very day i see and remember the first day the HSE knocked on my door, for the first time.
I don't wish to remember it.

lost but found and lost again

hi everyone,
sorry for not posting as frequently as i should.
the health has taken a dive.

shall i start with the good news then?  ah why not!
it is in short supply so the blog will not really contain much more, except at the end something might happen, you never can tell....but it might.


I have been granted permission by the HSE overseas treatment fund to get over to Queens Square for review, assessment and consideration.
this is GREAT news actually!
it is MEANT to prepare a care plan for my return.

Have i heard these words before - answer, yes.
but i am very hopeful that this will produce this as its coming from the top brass in UK and possibly europe.

we have to remain forever positive.

On the downside the slide is downwards, i am afraid.
the HSE continue the harrasment over returning the bucket chair, the powered wheelchair.
no one seems to be that ignited to fight for me but i am fighting.
I have indeed contacted ah Brian Crowley MEP, and by the end of this email should remember his first name, forgive me for forgetting but i do a lot of that these days, its easy really when your brain is effectively witless tired and jaded. (its been slotted in now remembered)!

I am waiting for physio, thats like butterflies, the one day wonders that come about when well, when butterflies decide to fly for the one day some day if not at all day, but no not for six months, but now we (twin and i are on the list)
I am also on the list for psychological input, not to sort my head at all but to make sure it stays on the shoulders and to try repair the confidence plummet after moving to this land of - well i thought peace and tranquillity for ever and ever amen and more.

that hasnt happened.
the care in this county for older people is non existant.
but as my staying guest/student who is going to fund the stay, 'there are a lot of babies in G...'
indeed there are...nice and rounded, fat pink and healthy.
so why are the babies then clogging up all the nurses time and attention at these weigh in clinics and advice clinics.
you see them enter in the expensive prams and looking good.
so why cant parenting be as primeval as it was intended, natural.  Most parents are good parents.
i am not denying the fact that vulnerable groups need to be watched and cared for.
not at all.
i dont think its either cost effective or fair to just have every baby in the county turn up at an alarming frequency.
and for each baby there is a triplicate report, thats obligatory.
the nurses are jaded and weary.
the elderly in the county, the disabled and other many vulnerable groups are missing out from the community care now practically consumed by babies
its not that equal in my opinion and having babies is sort of natural.  Mothers are good to them, in the main.
but a lonely 88yr old crashing to the floor and having a bloodied head which needs attending, needs the input from a district nurse, she needs watching.
oh same woman is angry that she is being told all about what she can avail of, you know home help and stuff.  she doesnt want it.
i know why.
it can be goddam invasive,  many cannot cope.
i have to cos i badly need it, but no i find it hard to cope with this.
hence the waiting list for the psych help, not psychiatry no, just someone to ease the burden of stress over coming here.
where the babies are.
what else have i not got and what list do i remain on.
well the emg never happened and am on the list for that.
the heart 24hr monitor never happened so waiting for that.
achilles attention never happened so continue to be in awful pain but waiting for an ultrasound and a dye thing xray for a hand that has now developed a trigger finger.
i am badly needing summer shoes and the denial and withdrawal of that funding means i am wearing clapped out orthotic shoes for deformed feet which saw me too hit the deck and gain a sprained ankle, its the same ankle as the busted achilles so now extra pain and no one cares a sh...how i attempt to walk.
i dont see health professionals except to give me a jab for the cytamin injection which is usually awfully painful for some reason.
i never had a painful injection before and the gp refuses to do it to ease my pain.

i have a lovely spanish lady staying with me as part of a three week stay educational like and she is a leader making sure the 15yr olds do nothing silly and move without supervision..they are testing her nightly...i think so far she has contained them to the rules, ok.

lovely girl i have to say.
its been fine but i have to learn now to have someone in my new home, its kinda financially testing to keep going on the disab pension and i manage just about so extra has to come.

is there any final good news eh?
well we are putting in to the equality tribunal a report to support our/my claim under the equal status act against the HSE.
i believe i am right in doing this.
it can however be a test case to see if ireland can deliver justice... we have to see on that.
Dr. Margaret raging Wheels has been working flat out on the documents.
she of EU fame and training social worker fame and saving lives of those who were abused by clergy.
she rang me this morning when reviewing some of the details "god ann this is awful stuff!'
need i say more.
oh oh good news i forgot.

well we went to the Moxie studios to look at photo books i enjoyed it and believe my twin did too, but next day i had the weeps and bawling yawling on the swinger collapsed in utter exhaustion.
still lying horizontal and shattered but there you are there you go.
still debating genetics and pain with people who i think find this subject rather baffling and confusing, comparisons been made on how children suffer worse than adults.
i do not buy this comparison at all.
children actually have a naievity that gets them by and love which can come in spades and hope because they have a 'magic thinking' mindset.
the adults however can feel drained, have an intellectual understanding that its never ending and they would be right,that they are left to fight for their needs usually alone and they have to live it like children do not.
rarely is a grown adult soothed other the rough patches. you sit it out or in my case lie it out.
the dyamics of communication defeats me most times, i find it difficult.
but for sure, it is worth it and it can start a debate that may end in a positive outcome, but i shall leave it once the name calling begins, because i am too tired to go down that route of whatever.
so so so so ah.
ann

super super moon from ireland

this was taken at around ten tonight outside my hall door, the super moon that prevented me from going to bed
great fun really great....glad i attempted this!
FEEDBACK now....am waiting......!