a single persons perspective cannot be all wrong

Labouring to understand - decline....personal, financial, economic both of myself and my country one has to find a way to explain to oneself and to others who care to hear.

the purpose of FOCUS, usually is, to er, focus.

the purpose of personality, perspective, possibilities, is to exchange the view of person's experience in light of the collective problems of my country.

it is as if i am doing a one person statistic analysis of cause and effect.

and the cause is real and the effect even more so.

We now have crisis and personality and the truth be told how does one explain it other than in how it effects a person and thats my aim.

I chose to explain austerity by how it effects a disabled woman, which i am but no, by definition, my disability does not define me but it does define how being disabled is detrimental to my health in the light of cuts, bludgeon cuts, without rhymn nor reason cuts.

its absolutely true to say the reasoning behind the cuts at the bottom strata of the economic divide makes no sense at all.
Look at the headlines today - we have a systems failure in accounting where millions were just more or less handed out in payments now found to be incorrect - by my government and its department of social welfare.
its not going to be written off by anyone, thats more than an educated guess here.
it will come down to you and me and all the rest of the eegits who do not protest the wrongs of my country.
it will be whipped from our pockets as 'austerity has caused this and so we have had to do this in light of the crisis our country is in....'

no, actually you do not have to do this.
what you do do is shape up your employment/employee and get the administration right - for a change and stop blaming austerity on 'crisis of country.'

Same too with non collection of further millions from hospital expenditure and VHI payments.
have you chased after all that?

well, i have heard a deafening silence here, well have we collected back what we should have or rather has the department of Health and Finance managed to do this?

I would be doubtful in the competency of staff to actually know where to start yet alone finish on this one.

We then have expenditure, rather than accounting next.

we discover under FOI, (please can the person who traced this to overpayments under FOI get in touch with me i want to source other corruption in this vein please).  there has been fistfuls of your money - not really  mine as i am a sickie and do not pay tax except on my house, taken off of ye and given over to managers who manage to either take money off ye again by not supplying need, eg HOme helps, physio, appliances, shoes, psychology, mobility allowances, aids and all manner of things.
they get allowances and perks, but these i think are given out if the managers do something for this.

what they can do is make sure they are keeping within budgets.
the health budget being one.
and the community and primary care budgets being another.
if a manager cuts and cuts what they give out to us, sickie and disabled would it be a far stretch of the imagination to believe that they then get some sort of perk.

and cause and effect sees me daily seeing more and more blunders in admin and burocracy and a glossing over malpractise and abuse of the wording 'in the name of austerity and the crisis in this country we have to....'
nope we do not.

the banking inquiry eh?  you have decided my country that they are all squeeky clean, so clean you do not think their is a case against anglo for instance.
cowen
Bertie....both slipping in under cover of 'events'
we are in crisis alright.
we are corrupting the sense of right and wrong in  the interest of 'austerity and for the sake of the nation.'
we are not getting our act together.
we are cutting at the bottom, society's most vulnerable and least able.

and of course, in the interest of austerity, the crisis of the country and woa we are getting back on our feet isnt that just brill?'
and will there be a big thank you for the disabled for allowing you, against their will, cut the physiotherapy they need, the medical cards, transport grants, home helps, PA's educational assistants, support worker, support appliances, and it goes on forever what 'austerity has done.'

we are sick to death (and might be actually) of austerity measures.
and i am frightened to dead about the forthcoming budget.
if there is any light at the end of the tunnel for us, will you explain it for i need an explaination i think i deserve it.
we saved this country, not the banks nor the govenment, now can i get my perk please?

the following know of my blog

Taoiseach Mr. Enda Kenny TD
Ann Ferris  TD
Simon Harris TD
Kathleen Lynch TD  special responsibility for people with disabilities.
James Reilly TD Minister for Health

HSE personel.
The Irish Times
The Independent
East Coast Radio
Health Editors of most Irish newspapers
Activists in the Health Advocacy sector
Whum Radio America
Helen Keller Foundation (I think, i hope)
Twitter
Greystones.com
University College Dublin
Trinity College Dublin
NUI Galway Disability and Law unit.

Please SHARE the message i put out.
Please SHARE the blog i write.
Please SHARE the state of Health in the Irish Nation.
Please HELP those with disabilities worldwide.


Please Treat us as worthy
Please consider us as equal
Please MAKE us worthy and equal.

After that, when we are equal in health, housing, nutrition, care and love.

Love us as part of the world.

We are PART of the WORLD and we are not going away - just yet!
so there is time, short yes, but time, to begin the process to end in LOVE.

PLEASE SHARE PLEASE SHARE PLEASE SHARE.

PLEASE CONTRIBUTE BY MAKING COMMENTS
PLEASE CONTRIBUTE BY MAKING COMMENTS
PLEASE CONTRIBUTE.
THANK YOU FROM THE BOTTOM OF MY HEART.

I LOVE LIVING, BELIEVE IT OR NOT!

what we know about the Irish Health System

FACT - the public health service doesnt exist.

FACT - if you can afford it, you can get health care here.

            Now all the following are FACTS......

this is an important hand




You can wait two years for a colonoscopy and go private to be told there is a lump there and you will need a scope.  STart praying my blog readers.  within a week hopefully.

You can wait over 6 years to get a new pair of shoes - for deformed feet and you have to keep these for two years until you are 'awarded' another single pair.

You can wait 2 years for an MRI on a knee, even if you have fallen down twice on that knee and cannot get off a chair.

You can wait over six months for a electocardiograph.


You can wait another six months for a holster testing.

You can wait three years or more, without having very swollen achilles ultrasound.

After which they are permanently damaged as mine now are.

You can have a HSE official demand a powered chair BACK!

they can also blackmail you in saying 'well its either the powered scooter (which is broken) or the powered chair (also misbehaving), you decide.  YOu cannot and you will not.

you can have a HSE official tell you how to design your home, even if you paid 208k for it and will pay property tax for the rest of your life.

You can have a HSE official appoint an OT 55 miles away, when you should have one ten minutes away (this is when the HSE official doesnt like you)!

You can be called 'aggressive' if you shout in despair.
You can be called 'dangerous' if you shout in despair.
You can be said to have 'violent behaviour' when you shout in despair.

the Mayor of my new town better watch out, he is sitting beside a violent geriatric!

when you complain about this...over and over...over and over...and ask for all the requests stated below....you will then be noted as having  a 'persistent complainent behaviour'

You will be denied your wish to have a character reference tell the HSE you are none of the above (many can say this)!

You can be denied a 'risk assessment' when they tell you the above, and beg for one to prove them wrong.

you will be told there is no one to do a 'risk assessment' but there is!

You can have a HSE official take home care staff away and then investigate why the home care staff has been taken away (one HSE official has done both on the same case) (fgs)!

You can have your GP refuse to do bloods.
You can have your GP refuse to test you for certain things, even though you know its common in UK or America.

You can have a consultant say 'you dont have parkinsons, you just want it'  even though a test which is supposed to be 97% accurate, costs 3,000k a whack.
You can be considered as having parkinsons disease a second time at a different hospital, same test, same 3,000k and the consultant who ordered it then say 'you don't have it!'

Your movement disorder then is labelled 'learned response from some past trauma.

Finally when all else fails to find out what is wrong you can then:

study the bloods you do have.
go online
check out some sites especially people with same blood results already diagnosed.
you can get the nearest overseas consultants in the discipline which best 'hits the spot'

finally after over ten years you 'hit JACKSPOT' and get a diagnosis.

you then move on a bit.
get sicker.
you then go over to a different country and fiftteen years later get another "JACKSPOT(s)!"

in one full year, finally maybe only maybe i will have a diagnosis for sure as they are almost sure  - in a different country to the Irish health system.

zipped in - unzipped out!

i think i do 'get it' now.

Secrecy.
Why so secret.
Systems do stink.

these systems, where there are many players, pawns, kings, queens and far too many er, managers cause a pecking order, cause a cautiousness as if in prison.

if you are small fry in a big organisation its best you stay quiet, and this too includes licking arse, being restrained in use of language, vocabulary and literacy when note taking is part of your job for instance.  i name but one example.


Literally.
when at a meeting someone may say something that is very correct and yet the note taker has been warned.
More than warned.
DO NOT WRITE ANYTHING down that you may live to regret.
so we have the pen stop mid sentence whilst new wording is considered and something else entirely  gets written down in the place or is left out, completely.

this leaving out has been noted.  a cautious use of language, an over simplification, but also a florid word or two goes a long way in starting a chain reaction.

 i have noticed this - FOI is a good place to start.
this i advise everyone to consider if they are concerned for their lives, their health and their dealings with state bodies.
ALL can apply for personal notes by any organisation under the Freedom of Information Act.
But remember the word Freedom is actually too liberal.  it isn't that free but you do learn an awful lot, i mean an AWFUL lot indeed.

its also a good way of finding out how systems actually work, for good or ill for a person.
you can trace where bad blood begins for instance.
what people are thinking and what people are saying and doing and also what they are not doing and why.
you can also see Slander there  which is illegal for everyone has a legal 'right of reply' to anyone calling them names for instance.
you just cannot do it!
most know this.
but unless you contest it, then they will continue it.

Zipped means that many do not find out the truth.
and they do not since they don't go to the source to find it.
it takes a strong man or woman to watch a process in the making.
the denigration of an individual is not a pretty sight.
if its you, then its awful.
its harrowing, bitter, upsetting and causes fractures in feelings, emotions and vulnerability.
but its the strong thing to do to find out where it began, who is saying certain things.

we have to start analysis.
for instance, why is snowden now finding it difficult to find refuge anywhere.
and why does a nation and more want to string him high.
he found out and he spoke out.
but i think he did this for all the right reasons.
we cannot allow secrecy which impacts on individuals who haven't a notion that such things are even happening.

in many respects it is about RESPECT.
slaughtering people behind their backs, is against human right legislation.
slander, taking a persons name and good character away is personal assassination that most would fight to the death to retrieve and rightly so.
If a person is good and honest, trustworthy and gentle then, to be considered less than this and named as such is evil.
I don't use this word lightly, but honour is at stake and a persons honour is the best part of every persons belief system.
insinuation and deviousness in dealing with certain people also is callous and immoral.

whole sections of society can go down the tube if such is let simmer and rot and stew and broil and over spill.
large swathes of peoples are and can be named and treated as less than equal.
we have the poor.
In Ireland we have a wealthy population who have a distain for the poor.
I don't only say this, Emily O'Reilly believes it too, and she has believed this since 2004 and things have become far worse since.

this is when the society begins to fracture.
some think they have a god given right to better treatment than others and so we start to see more and more who are treated badly and fewer who actually believe life and the worldly goods are entirely their own alone.

I can walk down the corridor of a private hospital in Ireland and a public hospital in Ireland and see the difference.
its disgusting actually.
there are real leather chairs and armchairs in the lounge of one, and plastic seats in the other.
there is a real glass for juice in one and plastic cups in another, real cutlery in one and plastic in another.
cigarette butts in the cracks of the communal toilets on a public ward and en suite in another.
in one alcohol wipes and cleanliness is in short supply in one and liberal fastidious in another.

we also have consultants speak to a sick person as if the person is a VIP, in another, the public system, they speak at times as if they are contemptuous of them and see them as shite.

when a private patient rings their consultant, they usually get a phone call back.
not so a public patient.
if you ring a private consultants secretary you can get an appointment tomorrow and with a smile.
if you ring a pubic clinic or secretary the phone rings out or you get an answering machine which no one ever hears and no one ever answers let alone replies.
you see your consultant if your lucky every six months and that's it, whereas if you are private you receive a consult on demand.

in the public system its more 'how dare you even ASK!'

if you have  a professional title for instance, it has been known for nurses to drop files and run for the attention that is needed for that person.
this is the patient in this instance.
but if you are a person on the dole, on disability pension or being in the psychiatric system - once, then the likelihood of being passed over is very very high indeed.
you might not even get fed for twenty four hours.
you do not believe me.
i kid you not.

this is why i say that secrecy has no place in society.
we must know the truth for the good of ALL.
if on a personal level you do not know the truth and want to know the truth then you go to find out and you do not give up until you do.
if you feel wronged then you go to all lengths necessary to put to right what has been wronged because if you do this, and more do it then what happens is a domino effect.
its less likely to happen and society as a whole starts to grow a spine and strength.

to be scared of an individual you know to be your equal is dreadful.
all are equal.
some societies have a caste system.
Ireland has, oh yes it has!
and having this, realising this its time to stem the rot and the split between the haves and the have nots.
and it cannot come soon enough as the gulf is widening by the minute.
also secrecy and silence are the same thing.

if you want an action or an activation of human rights then you have to speak up.
i will end what has been a long blog by saying we are now on the cusp of another budget.
we are warned it will be dangerously strict and restrictive.
but not to those at the top but the disability groups are bracing themselves for known cuts.
where are the screamers and the collective resentment on this.
where are the protests, the physical protests?
where are the people starting now stating that there will be revolt if any more cuts happen to the least able to absorb more?
well there are none.
and this my friend is feeding into the split.
the cause of divide.
the reason why it happens.
no speak, more cuts.
literally.
more shouts, more cautiousness on those who cut.
there is no votes in hatred.
if you are not approved in gov.  the votes go down.
so collective action is a good thing.
it reaps rewards, it also sets a high moral tone.

a country is weak if it cannot defend its own and a country is weak if it does not defend the rights of those who are not that capable of striking forth to do it for themselves.
we owe this to our neighbour actually.
and if we do this we are doing it for those who may come after who will be disabled, elderly, sick or unemployed.
i am meaning YOU!

If you have a comment that you would like to leave on any of my posts please feel free to do so, i welcome them and would like to expect them each time i open again and see they have arrived for consideration!

Merkel wins but Ireland Loses

i believe this is so.

many now are puffing and patting each other on their backs for managing to pull Ireland out of recession.

Have we?

Who managed to pull us out of this recession?
who got us into it in the first place?

What has been the cost of austerity?
Who suffered most?
who suffered not at all?

what happened during the reign of austerity?

--How i feel Laws were broken.
--How i feel human rights Law was infringed, denied and set aside.
------------Abuse was and continues to be rife.

We have many suffering and far more than we are led to believe and in incidious, hideous ways as well.

Ok, some say that we had to get our soverinty back and i guess so, i guess we had to be 'our own people' again.
But i do not see that we are actually our own people and i do not forsee this happening in my lifetime nor in the next generation's time or the time again after that.

in order to pull ourselves out of debt and bankrupcy we have sold all our goods to more powerful nations.
How can we say that we actually own that much anymore as the spoils are split between America, China and Europe?

In order to pull ourselves out of recession how did we achieve this and who suffered.
We had an AUSTERITY programme which ran amok i say.

None of the bankers, politicians and upper middle class (economic middle class) were  starving during this period.
they retained a lifestyle to which they were used to and maintained a wage packet and bonuses just as before.
some even, gave themselves more and had no moral concience about the suffering poor at all.

it was indeed a dancing on the graves.

When I read Emily O'Reilly say two things regarding Austerity this morning in the Irish Times, she said that we had 'rationing by stealth.'
People understand Emily O'Reilly for being forthright with the truth, she isnt escaping Ireland for nothing.  She has been noted and accepted as Authority in most things.
When Emily speaks, others listen and that is the truth.
she does use wonderful literal language.

she calls it rationing by stealth because she is a diplomat.
I say we had stealing by wilful individuals, departments and  government, who stole and denied so much to the least able in order to achieve an aim of Europe.
In doing this, they kept their own money, priveledges, rights and standards of living.

We, the underclass, namely the disabled saw our life style so attacked that we were and will be left in our homes without being able to even MOVE OUT to enter the world, this is not a metaphorical turn of phrase, i am speaking literally.  I am speaking here of 'imprisonment' and 'against our will, too.'
we are being cut mobility grants, care assistants, appliances as in powered chairs and All of these means one thing - allowing us to MOBILISE!
without these, we are literally 'fucked.'

We have also a denial by many that this is wrong.
they say it is 'necessary' because 'we are in hard times and must get out of recession, we must get back our sovereignty'
but not at all!
We do not have to go through the lives of vulnerable adults and children with a hatchet austerity programme when it wasnt beyond the laws that were in it to go for those at the top of the ladder.

they wouldnt do this of course, we have a society where if 'you scratch my back, so too i shall scratch yours.'
 In this type of society you cannot, simply cannot go after your own kind because in the long term you then lose out on back handers, vote approvals, slaps on back and payments under the counter, into the off shore counts and priveledges second to none.

who could afford to lose all THAT?

But children can lose out on special needs education.
mobility allowances to get them to sports and respite.
they loose out on services, speech therapy, austistic services, special schools, transport, adults too lose out on respite and do a job now that in most cases is not paid and for which they receive no claps on backs and no back handers either.

we have people struggling to make ends meet, with lack of breakfast for the kiddies in order to stave off the baillifs.

We have bullying on a grand scale by the HSE which i have documented at length on these pages.
this sort of onslaught attacks the fibre of society accross the board.

morality goes out the window.
Laws which protect us against Human Rights abuses are being flaunted and many turn their backs on the wrongs of policy making that attacks such rights for those individuals who have little by way of power to effect change.

No one now sees the silent suffering in the homes of Ireland.
No one sees the suicidal ideation of young men, families with trauma in their lives, the sick, the vulnerable and the disabled.

We have a stripping of Ireland of all that was held dear and good.
we cared for the least able.
now we care for no one but ourselves, and just about stomp all over everyone else.
we are beginning too to believe a belief that is taking hold in the rest of Europe, that those who are disabled are denying the rest the right to social welfare, housing, benefits and special attention above all the rest.

this is so not true.
You only have to examine a case of a sick and disabled woman aged 60yrs, which also puts her in the bracket of Geriatric and see that far from snapping up anyone elses monetary goods, she is having her basic disability pension reduced and reduced on every budget day and its a basic pension, nothing very special at all!

she is made pay far more for her medication than ever before, in fact double what she had a year ago.
many medications now are off the list for funding.
ditto the gluten free products are gone and she bakes her own bread (not in a long time as she has been too tired of late).

she is also being harrassed in a vile way to hand back her powered chair and have her mobility needs reassesed.
This is what Emily O'Reilly also alludes too when she says her one regret was her inability to develop an Adult relationship with the HSE and the Department of Health.
This speaks volumes for we have an advocate in our midst, who saw by the profiles of those appealing to her for assistance against such health abuse that she could not engage with these forces in a meaningful adult way.


After reading the shocking stories which abound in UK this lady will not give back her powered chair which is the lifeblood that sustains her ability to move around, with free will and not be tied any place at all.

If we cherish the need for our soverign nation again can we cherish what was good then about our nation?
our once treasured good will toward all, especially all who were vulnerable and ill.

Can we regain and make a better notion of christianity and morality, instead of sexually abusing those we are caring for, locking them away and imprisoning them in their homes can we view or have a 'groupthink' on how we wish our spirituality should develop and move pass the grimy past of religion?

Human Rights is a 'dirty word' in Ireland right now.
Human rights means a very different thing in our 'new Ireland'
It is based on Economics not the human person for which the rights should be attached.

We, in effect are killing the soul of the Irish Psyche, causing a sarcasm of soul, a disbelief that we can ever be a great little country again.
the confidence is actually gone, in our ability to move and make the right moves in society on all levels, not just economics.

we are now forever looking to someone else to show us how to do things.
but in this we also say and do what ever it takes to please anyone other than ourselves.
we also have lost the moral fibre to say NO, to Merkel and the EU.
we have lost the moral fibre to say NO, we cannot have anymore austerity packages effecting the least able again.
WE CANNOT SAY WITH THE CONFIDENCE OF THE IRISH -'WE WILL NOT SUBJECT OUR CITIZENS TO MORE OF THE SAME, SLAUGHTER'

CAN WE DO THIS.
CAN THOSE OF US WHO ARE UNAFRAID TO SAY THINGS AS I HAVE DONE IN MY SMALL WAY AND  OF COURSE EMILY O'REILLY HAS CONTINUALLY SAID IN HER FANTASTIC DIPLOMATIC WAY -
'WE WILL NOT SUBJECT OUR CITIZENS TO  MORE OF THE SAME, SLAUGHTER'

when politik vitriolik meets ann vitriolics

it is obscene to cause distress to a sick person when this distress is caused by a body of professionals who all have been to university to study years, in order to care for the sick!

I name here in violent distress the Health Service Executive of Ireland.

for the past two years i have unrelenting harrassment by professionals of the HSe.

Yes, of course i am seeking advice.

to do assessments, then say they were 'mistakes'
to give powered chairs and then say it was a 'mistake'
to demand back this same wheelchair.
to continue this for months on end is nothing short of scandalous.

when i ring the politicians of the day, Minister Reilly at the helm of the Department of Health i was told again today it had nothing to do with his department but the HSE.

surely to God HE is the man in charge of the blasted HSE?
surely to God he formulates the structures, the payments etc to the Blasted HSE.
surely to God, he a GP should be able to see that to whip away a powered chair from a person suffering a neurodegenerative neuromuscular decline and myopathy should see what is happening is a crime against humanity.

you cannot stand idly by and allow this nonsense go on for months on end.
as it has been for myself.

Now we think of a powered chair as an item for need for those in need.
no one who doesnt have this need would scream from the roof top for one would they?
No, cos to be in one puts a very different slant on life, believe me, it does!
so its not exactly the 'fashion icon' of the decade or even the century.
its a necessity.
and i need one, and i need it now but the one i have is banjaxed with bits falling off, including wheels and the control knobs.
something has to be done for sure.

when i ring in about it, that its sick i am told then to hand it back, its been given by mistake fgs!

yes, like what happened all the money in this country that was squandered by mistake, will that be given back?  To US!
ah nah, no.

but my bloody wheelchair clapped as it is has to go back to the great HSE who is the organisation Minister Howlin has declare 'not fit for purpose.'

you bet Minister its not fit for purpose, and while you are at it, will you tell THEM and also Minister Reilly GP TD?
cos this woman who now is in the geriatric stage of life having hit the great 60 and about to hit 61 is having to deal with the HSe whipping wheelchair offa me.
Will you deal with your errant children?
them that got to the great universities and who got a chance to vote for the Seanad? I didn't.

I have had enough of the HSE, my belly full of the HSE.
i live daily with it, fighting it, writing to it, and hating it.
i sleep distressed and dream about it, the wrongs done to me and how i get out of it all, i wake with dull sickness in the pit of my stomach and the first thought is HSE.

its a disease.
it feels like a disease and its killing me.

when the HSE want to take a wheelchair away it would leave me powerless, as in electric powerless.
these items as i say are no luxuries.
but they are expensive.

this expense entirely driven by the fact most don't need them.
therefore to produce them is little but less is needed so the few are more expensive on the mark up.
that isn't my fault!
nor can i afford it...i cannot afford a powered chair from my pension and my disability pension.
given that i was and am disabled all my life, i hardly worked, but thats not my fault either!

No one deserves a free lunch you may say.
no, no one really does.
but do you whip the legs from under people too?

what will be the next step if the HSE cannot afford a powered chair for a disabled woman?
will it be shooting her at dawn down by the greystones harbour?

well having typed up all the names in order of appearance in health and other who have been involved in my health care over the past two years, it runs to about 50.
the paper trail them lot has produced doesn't bear thinking about.
the time spent speaking on phones, dialoguing, discussion,meetings etc regarding my care doesnt bear thinking about either.

but what DOES bear thinking about is the COST of all this.
Leave the damn wheelchair out of this for a minute.
when we take over 50 people engaging with each other and self regarding my health care for a period of two years that has to add up to a lot of wheelchairs in monetary terms.

so if you sort a problem within two weeks when it comes to this here 60 year old geriatric you could afford to give me the wheelchair and all would be happy but in that brief process, and doing without the agony of the past two years, you could have been able to afford far more wheelchairs for other individuals who need them.
Instead you start on a campaign of harrassment, threat, name calling, labelling, banning and vitriolic.
well you have one lady here fit to kill.

Christmas is coming, will Santa either please Bring me a powered chair in my stocking or do me a favour and ask Scrooge would he employ them?  that is, the HSE.  for it seems scrooge would welcome such a shower.
i dont want them and will sell them off to the highest bidder, who bids me please?

Family values, family ties and living lies

thinking of family i am looking back at where i belonged within. without my work i would not have survived to the present day

when my twin came home, she never thought it would be to this, this alienation and annihilation.  without her work she is finding it very tough going indeed.  

Now we say, without our family we will not find it easy at all and we need the family

i am now pondering on the modern aspects of 'family' and how in such a short space of time, say a few decades the role of Family as a collective unit has shifted very drastically away from Family.

I also ponder on "loyalty" and how you can consider you have won that loyalty for services to the 'family.'

in this context are we talking mafia style?
middle class style?
or family personal style?  as in some families have one set of rules and many have another.

It isn't easy knowing that the emphasis is shifting away from family ties so quickly but also isn't easy to understand how the ties, loyalties and emphasis which held my family as a unit has gone from within this unit, this generation.

So the rules, even of my mother and father have disappeared within one decade.
the rules regarding the next generation are a wide mile away from  our understanding of family.

Hardship, allowed Family loyalty to prevail, so that when times are rough it is instinctual to collectively ban together to help the individual(s) who are the least able cope, cope.
so that All can live equally within the unit of family.

but when hardship allowed this ten years ago, ten years hence it allows the family to run the other way.

on this day we awoke to freezing temperatures and knew we had to drive over and lay the sand bags so that the men could come up the hill to clear out our house.  No one helped two women with a neurodegenerative disorder this day, we did it alone in utter despair in our souls.  we knew then, how alone we were and would be.
and this is happening now and i want to question why?





what values are of VALUE?
is it the socially elite which actually makes those who revere this stay loyal to the ones who made it into this elitism.

kindness and togetherness happens once a year

Is it the wealthy who has brought a new 'class' within the family structure, so that this value is good and honorable, enough to lick arse and excuse my phraseology but actually its this that really bugs me very much.



With a companion for Life 
what happens when the parents go and die off and the siblings are getting older and something of trauma happens then within the dying generation that is touching the grave, so to speak, which makes these siblings, their cousins and their cousins children as well as the siblings children literally turn away and run away from the members of the family who are least able?

my twin and i were spending a very pleasant day together.  We do not as sisters always gel together, but one thing that binds us fast and hard is loyalty and disadvantage and care for each other.
we can have incredible bust ups which are legend.
but we have a core value, that intrinsic realisation that we are now very sick, very disabled and very lonely but we also know that we cannot walk away and we know that to do so would be utterly cruel, criminal and uncaring.

we also have Love, within so deep sometimes never expressed.
Love gets us by in the way nothing else does.
and when we have the bust ups these are dreadful and soul destroying but always we see how we can help back to a better place.

we were having a pleasant day yesterday and we went to a store to buy and browse, but unfortunately so too did our cousin and his wife.

this should have been a meeting in the aisles with cheer as we rarely see each other.
it should have been a five minute chat and burst of enthusiasm to catch up briefly on the extended family.
what it was and how it happened, happened quickly and hurtfully.
the cousin spotted us and ran the other way.

the wife was more uncertain, waiting a while and trying to make that decision, and she walked down the aisle of her husband.

my twin and i moved on, one on a rollator and the other a powered chair, we moved on to continue what was a good day, but you are inevitably left feeling dreadful.

this i ask in the beginning, what has happened that has been so dreadful to cause a cooling of such that means further isolation occurs when family could be so much and mean so much for all.

its not as if the sickies and the dying have nothing to offer.
its not that we will ask much other than to support and chat and come have tea come talk about the next generation and politics and boy there, is a wealth of chat in that.

but no, the twins.  the twins are made go it alone.
made struggle alone.
made feel utterly outside the box its unbearable.

made to feel unworthy of that attention that would mean so much and be yardage of joy for days on end.
instead we have to do everything alone.

My family now is my twin and her family is me.

I love you my twin and know you love me!

I love you my twin and i know you love me!

we have a very We come from a large family, we had certain values rooted in the christian message of 'love your neighbour as yourself', but family has 

 also gone the middle class route mafia style they now abide by ostracising and annihilation and for no good reason actually.

there was a bit of Barny a few years ago,  but in the irish context it wasnt massive by any stretch of the imagination. 

no one has been that hurt by the disagreements.

no one

certainly has been defrauded.
no one lost a wife or husband.
no one lost anything when it came to my twin and i.
but we lost everyone, this generation and the next and even the next in a couple of years they all went.

apart from disability and the traumas of the twins what else meant that this seems to be the way it will play out til we die.
that we will die alone and in the dying have to deal with this alone.
but also never to see a friendly family face or group again without some strange wariness that could be avoided if those who have mistrust would speak it first, clear the air second and then get on with it.

but my twin and i have chasing down aisles away from two woman aged 61yrs of age and running away without looking back when spotting us.
its utterly bizarre i have to say.

i am still trying to work out all the 'whys' of this dynamic.
some i do know but not enough to create such a split and rupture.
nothing along the lines of politik has happened.
we are though a family sectioned off in tiny boxes and the old are getting old alone and the next generation is doing its own thing.

from the point of view of 'the way its all going,' family structure has broken down and doesnt exist anymore.
there is no loyalty within the families of ireland as i see it.
the individualistic styles of living now where all seem out for themselves and the next in kin or friendship is only important for the gold they can offer or the friendship until one day the friendship isn't wanted, so an individual then is tossed away like rubbish onto a heap.

Loyalty is a dirty word.
loyalty sometimes means slowing the pace for the elders.  stopping a while to say the 'hello' but the youngsters are not that keen to do this.

so in a country where family was all important i see a massive change and it came with modernity of a kind that was and is global.
no one cares for the least well off and all now run away.
all do not care for the other.
all just think if there is a sniff of difficulty in that persons life i dont want to know thank you.

To 'Gift' the best part BACK.

 i am comforted by my Mags.....

how many of you have reached that point of - looking back and doing so far more than - looking forward.

why do we do this?  What are the benefits?

I think really it is to make sense of mistakes and also sense of relationships and how it all panned out over the decades.

Most in life will have chasms of guilt and pain and many seem to have a lifetime of this.

So when you do reach a certain stage as i have, you do look back.  You wish to place the jiz saw pieces at the corners first, work around the edges and then toward the middle, inch by inch, piece by piece.

Today was such a day that brought me to this point.
I went BACK and forward.  I met and then considered.
I chatted and realised.
I came home, BACK and looked forward.

I met a very vibrant person who will not mind being named, as Maggie Brown, photographer.

Remember Maggie as we parted with outstretched arms, hair flying and saying 'Embrace, embrace all this, the AIR!'  well, that was your idea. but what a picture.
one seated wheelchair user and one long and tall and dark haired sparkle.
i giggled and laughed as i electronified the walk back to my van.
i felt all warm inside.

i had a good day Back there, I did a nice bit of shopping, and found out nicely that my fingers were not broken.
i also informed the lady doctor that 'disabled people do not use the term 'wheelchair bound' now but 'wheelchair user'  "oh" she replied, "I shall remember that."

this woman from a tropical island somewhere in the sun had been in that A'E for a very long time,  it seems, and she saw my sister die and saw me in pain on too many occassions.  i do feel good in A'E when she is there.

ah back to the other beauty.
we did, chat.
we spoke about photography and spoke about ideas.
MY TWIN AND CONSIDER HOW MANY HAVE DONE THE SAME AS I WISH NOW TO DO....

placing ideas and many times to place these in context of where we are at, right now.
i am at that point..... of placing my work down for posterity.
there is, now and always was far more to me than the ravages of personality, but more of that anon.

what could i do now at this age that will be of use, when 60?

time has passed and the creative life blood is with the young.  As a 'Wrinkly' the computer age and multi-faceted media that all young now embrace from about four years of age is theirs.
Mine was and has been the paper and the pen
but i have touched and sniffed the new age and become literate, but only to a small degree.
i have to combine what i had always known and what i now know.
to place solid facts in details and fill the cracks of the jig saws for both me and my relatives to come.

I call it - TO GIFT THE BEST PART BACK.

Mulling on this and all the ideas and how they fly we spoke too of how full my head is actually with ideas and invention of ideas and bringing them to reality.
we giggled at how fast they fly and how so many stay in the air so none is really  held a moment to fully understand and place down.
i have to start a calming.
this would be difficult.
I then LOOKED BACK at who i was once, and how it was once.

i remembered the kiddie in the garden racing around on a blustery day wild with excitement.
A day so like to-day actually.  It was wild out there, Maggie Brown's hair flew.
Back then i grasped maybe a flower, a bee or a racing cloud and saw possibilities and saw colour and movement and joy.
I always saw that.  The JOY in the possibilities.
Fun was who i was but like most the life around shaped me.
it wasn't that fun.

So you get shaped and held against your Will, so to speak.
The movement of a society, of a family hemmed many in methinks.
It's like the autumn in all.
The time when the fruit falls and bursts open to spread the seeds.

Back then i felt encased.

Overwhelmed and suppressed. 
 I felt different
Not many around me was of like mind.
Not many wanted really to hear my story of the ladybird on a leaf i had found at the top of the garden.
as i gabbled and recounted i remembered now the 'oh would you be quiet.' said harshly to an excited child.
I was, for a very long time, especially inside.

I wanted to run.
I never wanted to be still, to conform, to be part of much.
i wanted to see things, use things, and do things.
colour and nature, the wind, rain, sky and earth was about as much as i wanted.

people absolutely, NO.
I wanted nothing at all to do with them.

I neither understood them, or wanted them.
but inside i did wish to be like those around me and knew i never would.
It is important for a human being to feel they belong to their own kind and family.  it hurts when this is not so and never was to be so.

It took me decades to come full circle.
the in-between time was the trauma unfolding, of escaping, trying, not succeeding, spoiling and ruining both self and also the chances i had to actually work hard on belonging.

you look back and say of certain people "only for you i might have been...." and "if it wasn't for what you had done i could have achieved..."

Some part of you can be very bitter on that!

Then i look at personality and wonder was it really so terrible to be who i was after all?

And who saw that i was?
If they saw this, was it important in the end that they did?
not really, i suppose.
But it is regrettful.

You did want to be together in all things.
If not so, can anyone be at fault, least all yourself?
Because shaping of an individual takes so LONG, and long past the grave beyond the person shall sing.

If i was the person i was at four and remained that person can one say then that the actual human that is before you has done wrong?
i think not.
Remember the child of the ladybird story.
"oh Ann, will you be still, shut up and sit down!"

The hurt!
Imagine being stopped in such a violent way for telling a story so dear and you wanted to share it with your family so dear to you?
Imagine the tears there, stinging in innocence and not fully understanding at all.
Imagine running away from that and feeling the hurt?
I did.  I did often.

I stayed away a long time.
Decades and forever.
I then never knew quite when to speak, how long for, when to shut up and for how long.

So the best really was never to speak!
I learnt that.
 I ran on the sports field, there i let vent the anger and the joy and the spin of a young child who embraced Joy but was never allowed express it the way she wanted to.

Gabbling with words a-tumbling, is not a sin.
relating, engaging, all too fast is neither a sin or wrong.
 To do it cohesively may be the challenge of this child.
And still.
Be still enough to do it even now.

So i am taking the jig saw by the corners of the page and making the picture real.
for all time and for myself and Peace.

remember when we live a lifetime its not time for the regret of each day in passing in pain.
when you have walked the walk of pain you want the peace and you will do anything for this.

If this peace is to make amends by offering the best you have within and for real then that PEACE you will have earned in spades and settled the debt of an age.

But within that i hope to show where i had shone and what i had found beautiful.
Where i had also found hurt and suffering.

Remember that i was that different child working on the great experiment of 'belonging.'
Also remember that on this journey so bloody long i discovered a thing or two which surprised me and yet didn't so much.
i have noted brain damage.
 Now i see.
 Can others do the same?
 Can others take this acceptance or this offering and calming for a woman old now who had that brain damage and yet held the best until last?
We shall see in the next few years if all will meet in a type of forgiveness and togetherness.
it is a final time for learning and for making amends and the PEACE that comes with this.

I am deeply saddened with the life that has passed -in human terms, that is.
Not at all saddened at who I am for I am proud of my honesty, my love and my joy.
i am glad for the strength that I truly had for I was sent many trials and continue to have them come fling to my Face to face.
So,  I am glad that the hurt has made a tough egg of me and my personality.
I am who i was at four.
I am who i was at four.
I remain four.
And i am sixty years of age.

Not unhappy, but not happy either.
Now do i belong in the world or not?

I most certainly DO.
Very much so.
All will say this at the end.
I am not unhappy, but i am not happy either.
If you say otherwise, you are not human!

Mito and me/us!

hello firstly, to all the 'Mighty Mitos' amongst us.

we are mighty for we fight a mito battle.

we have - Mitochondrial Disease

 and 

THIS WEEK IS MITOCHONDRIAL AWARENESS WEEK.

What is Mitochondrial Disease?

Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection

I will now tell you what its like to be effected and how not to judge us if you are not aware of it all.

it is important to get the awareness out, to let others know not because we alone suffer but because awareness can mean life, it can mean death and it can mean a better quality of life and also an even worse quality of life.

be Aware....
................ this is big,
...............................its genetic.....

the funny thing about mitochondrial disease, you can go all your life without knowing you have it, or, you can go half your life without knowing, but also you can defo start your life knowing and even worse children are worst effected as they are still developing bodies so this makes sense that they are.  More children die of mitochondrial disease than childhood cancers.

Mitochondrial disease comes in all shapes and forms, but the basics are - its an energy disease.

the Mito is a tiny part of each cell in the body which converts food into energy, when these do not work, the body begins failing.
some rapidly fail and some with specific mito disease fail more so than other parts of the body, depending which is worst effected.

it is multi systemic and variable.
and once diagnosed you then become aware that its genetic and the whole family must become aware of how it works, and how it can develop and all families should be offered genetic counselling.
it helps to stay informed of choices.

there is no cure and no treatment.
but most people are on a vast cocktails of vitamins, CoEnzyme Q10 (In Ireland this is NOT on the medical card) which is frightening and other types of medications too.

now i will add a bit about wheelchairs because its a vital component to any one's life, especially if they have mito disease.
some days mito people might be OK, that is they may function better than on other days.
Most will rely on the wheelchair part of the day, all of the day or as the day progresses.
some will be in a wheelchair all day and every day.
it can depend on a lot of factors, including stress.
this is a high energy burner, STRESS can burn and hurt bad.

if you see a person get out of the car and walk to the back of their van/hatch back and take out a wheelchair, it doesn't mean we have a fake on our hands.
we have mito in our bodies and we are giving whats left of energy a chance even to get out and function and we may have less on this day or indeed this may be such a familiar pattern that people with mito know that the most they can do is drive, take out the wheelchair, use it and pop it back into van/car and go home.

Once home they may be able to walk around their own homes, plenty of seating, plenty of resting booths.
but not so when out.
you cannot sit down on the street when the banks are all used up.
you cannot lie horizontal when sleep is beckoning rather faster than anticipated.

its also a progressive conditions as mito die at varying rates and the wheelchair may be a permanent feature and may replace legs entirely.

by the time mito experts understand they have mito and know about it, they also know how their body functions and what they need to do to get by and operate in the everyday world, including getting out and about.

this is common my friends with any condition - YOU KNOW you are sick when you are sick!
you know you are tired when you are tired.

and most know they are too tired when they are too tired!

for mito though we are tired all the time, without a let up even with sleep.

Sleep too can bring its difficulties.
some go to bed with breathing apparatus.
I am nearing this phase.
for the energy is lowered by night time and for my twin and i we find it hard to sustain a breathing pattern and find it physically difficult to keep breathing.
its very scary when we overdo it.
we also know our hearts are effected as we feel it.  it does what we call 'something funny.'

this is about the biggest thing my twin and i will have assessed when we get to the UK.
we also are now at the stage we are using wheelchairs almost daily.

personally speaking walking is now agony for me.
with arthritis, sjogrens syndrome, a moisture gland condition but also multisystemic (does effects the joints and causes in its own right chronic fatigue as Venus Williams is all to aware of), fibro which effects pain levels and neuro stuff going on i am not able to walk anymore in comfort at all.  Each step i take is with a grimace.
i also have a muscle wasting condition and dystonia, my legs feel like lead weights.
my feet are deformed so they are crippled inside them shoes, which are supposed to help but do not.

I want to be in the wheelchair all the time
but also i know to function to max i have to walk.
we need to walk and keep whats left at optimum and sometimes that requires pain to do this, even if this is only for short spurts daily, i want to keep this up but i don't like it.
I hate it.

it isn't a factor for us to walk fifty yards so you're OK mate.
this isn't about the physical act of walking.  its about pain, exhaustion and fatigue like nothing else.
if you have had to go to work, with a belt of a virus as well as falling half way down the stairs and missed breakfast this will give you an idea on a small scale what it could be like if you did this everyday and much more.

you cannot visually see if a person has mito in a lot of cases, but in others you can, many children  who have mito are visibly unwell, in wheelchairs and sometimes suffering many manifestations including 'seizures.'
but many in wheelchairs look healthy specimens!
others look very sick.

what i am trying to say, this is the invisible illness and condition, and there are a lot of conditions like this.

You know the one of 'well, you didn't need it yesterday why today?'
or 'you were fine yesterday!'
'you don't look sick to me'
'you could if you made an effort.'
'have you tried?'
or 'just this once you can stay up/out late, awake.'
or 'bloody hell i put the kids to bed last night why AGAIN tonight?'
or 'its your turn and i am not doing it, ' oh oh oh, agony.
how many households have rows, fights and misunderstandings occurred with a mito adult or child in that home?
how many have found such a household and relationships just too much a struggle and members who are healthy have left for good?

how many sickies with mito have caused rifts to occur which mean isolation of that sickie from all family now takes place and there is that sense of alienation, just at a time you need 'family' most.

this week in International Mitochondrial Awareness week.
its to try and get people focused, for one week only on this very long word for a very big condition.
its a dreadful condition.
To be aware is to allow you space and others space to think about how others cope with such a condition and how best to respond.
this is the purpose of being aware.
AWARE to all the permutations, and all the possibilities, living, caring and knowing about mitochondrial disease.

Some one near you may have it.
some one near you does.
it can be right beside you and you may not know it.
you may have it and may not know it.
or suddenly you found out that a member of your family has it.

but in this instance, I have it and so does my twin.
At least we have been told as much as much as anyone can be.
its an educated guess at this right now, but now we need to have further investigations to pinpoint how it effects us, how badly and what care plan to put in place.
I am supposed not to come back to Ireland until it is safe to do so.
as my learned GP has said to me recently - you could be away a very long time!
i am hoping that the HSE will see this and be aware.
i hope.
I do.
I hope.

http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7929671/k.BDF0/Home.htm

http://www.mitochondrialncg.nhs.uk/
http://mda.org/disease/mitochondrial-myopathies/overview

The budget looming

Joan Burton TD has a job to slash a large amount from the costs of social welfare and this is ordered by Troika.

We are supposed to be rising out of the doldrums of economic collapse.
so why cut so deep when we are again a rising star?

We had up until now treated the vulnerable in a way that few countries did.  We treated most who were misfortunate a bit better than other nations.  We were known for having a better social welfare system, but is that wrong?

We are not a high flier now and in the scheme of things never will.
we are on a string and we do not pull.

i worry so much about the upcoming budget.
those of us at the bottom of the ladder are struggling.
the seniors who gave so much to both society and the country.
the seniors who created the bodies of the men and women in Ireland and those who have left these shores.
we then have the disabled.
some have been so since birth.
This is no crime and no burden.

we are after all supposed to care for each other.

the disabled did nothing wrong, and some say didn't chose to be born.
but I, as a disabled person am glad i am alive.
I would prefer though if i was living.
because the cuts have not only crucified the health service which i badly need but the health service in their harsh ways these days have made life hell for me and my twin sister.

If any body i could blame for making my life a misery its the HSE and they know full well this is so.
I don't entirely blame the individuals within the hse, but do blame 'attitude,'  'stigma'  personalisation which is 'not being professional' as you do not think of a person's personality when deciding how to care for them.
you think of their disability first.

but never so the HSe, who love the old Irish way of favouritism.
Favouritism means that you lick arse.

It is true the only way in Ireland it seems to get anywhere or achieve anything is to 'lick arse.'

We have not fought these cuts the way we should have.
We have not stood up for human rights, people with disabilities, are so crushed and fearful that they too have taken little political action as i see it.
if you do not demonstrate vocally and loudly about cuts to spending that eat into the basics of living eg mobility, independence, equality and human rights then you have not stood up for the least able nor yourselves, if you are a disabled group.

we are going the way of the strong, we are smashing the weak.
this is what a nation does when money is the only thing that matters.
before we had the 'big ideas' and the 'celtic tiger' we didn't need or wish to be say, Germany, or France, Italy, Finland or Denmark, nor the UK or America.

we were a confident small nation looking after each other.
but we began to feel we 'were not good enough' and had to be equal to the rest of Europe and had to be 'big and powerful.\
what happened then was the need to be equal in Europe led to greed and we had a major collapse and our ethos died.
we lost our souls, sold our souls.

I see this budget now coming as Not Ours, but that dictated by those who love to trash for the sake of power and money and that wasn't our ethos at all.

be afraid, be very afraid, we are going the way of other nations, but we now have begun not to exist.
we shall no longer be our own person.
we will be amalgamated into the pot of blandness, money and congealed to power of others, we have lost our way and we definitely have lost our voices.

I feel Ireland has gone.
we no longer are Irish in ethos.  In the way we think of others.
the way we extend the hand of friendship and care and had a sense of family and believed in the Irish family unit.

there was a lot wrong with Ireland, the church, our adherence to it in such an incestuous way, but can the adherence to 'love your neighbour as yourself,' be worse than 'love money and forget eveythig else.'

fight this budget because we have had these cuts on the lower end of the economic strata now since the mighty crash.
no one who is rich in Ireland has seen a life less well lived.
we have.
we don't live.
and in so many other nations, those at the bottom are dirt.
I am now being treated like dirt and this is a direct result of power, greed and cuts.
if the financial pot for the least well off had been left alone, we would not be treating the least well off in such a horrible fashion on a personal and a psychological level.
the elderly, the disabled and the poor will always be with us.
the elderly, the disabled and the poor had never the means to crash a country to its knees and leave ghost estates smashing down all over our land.
we just wanted to stay warm, fed and enjoy a simple life with a bit of help from the neighbours.