Tinge of everything AND A BIT OF COMMON SENSE

hello everyone.
again i am slow to keep up the blogging.

but again there is that stress, the humbug of stress.
and distress in a lot of things.

I am thinking of sickness.
not just for my sister and my self.

I am thinking of family
not just for my sister and myself.

I am also thinking of other words, they trip over each other to demand a dominant space to ponder, find a solution for and get cleared out of the lexicon.
we have for instance trotting one on top of the other.....
             Pain
             Isolation
             Ignorance
             Fear
             Financial worry
             cut backs
             Lack of services.
             Global pain (will explain)
             Unkindness
             pain - again - I will explain.
             Difference
             Inequality
             Crookery
             Devious
             Hopelessness
     ABANDONMENT FROM SOCIETY.  - I will address this as well.

I guess really, the final statement or cluster of words in an ungrammatical sentence would explain all the above as being the cause of all the above.

i will not go through the list but it does concentrate the mind away from the following:

              Energy
              Friendship
              purpose
              Engagement
              Fitness
              Carefree
              Laughing
              Freedom
              Opportunity
              Empathy
              Enabled

   INCLUDED IN ALL THINGS AS IN LIFE ITSELF

WHEN I WAS COLD YOU GAVE ME A COAT

ON EVERY LEVEL, IN EVERY WAY BY ALL THAT WE CONNECT WITH AND ALL THAT SURROUNDS US.

WHAT WE HAVE INSTEAD:

   is, a separation between those who do engage on a healthy level and find purpose and reasons that sustain them.
  people have enough energy to retain the friendships, explore the possibility of more and entertain with empathy.
HAVE full engagement without worry or stress. Energy will be no real difficulty so to cause a crash of regrets, slumber, agony and  depression.

Lonlieness is alienation from a world that is running on full.
Lonliness is a separation, you are caged either within four walls or soft bedding.
Lonliness means no communication because the world has decided to carry on without you.

I am alone!

Lonliness is feeling helpless to effect change due to sickness, disability.
Lonliness is the separation from the full tank of purposeful endeavour.

No you are not!

The connectedness of peoples are broken when an individual gets sick.
When a person becomes disabled there is a fear of abandonment, also many fights ensue which cause the gap to widen within society, a community,  a friendship and family.

Many roll on by and many decide to castigate the person so unwell as being a cause of something completely outside the disability itself.
when the clash begins between a well person and an unwell person it can lead to feuding, misunderstanding, alienation and silence and this may last for years or decades or weeks.

................I am alone................

The distance then becomes wider and the gap is getting bigger not narrowing to bring all to a place where one does embrace the other.

Reason goes out the window.
The sick know in their hearts that they need help but as far as it goes, that help is to assist them remain in society.
This is the agenda for the sick and disabled.
There is the right to carry on as equal and this is not a contentious issue in itself, its a reasonable request of the sick and disabled.   Belonging is part of what we call 'society.'

The well, the healthy and the able see it in a totally different way.

 They remark with horror how you do not cope but fail to understand the dynamic of coping.
Most do cope with help, when sick and disabled.
This notion seems to be lacking in the psyche of the person who is bouncing about with glee, enthusiasm and focus.

They also feel that with sickness something may happen their own joie la vie, but this isn't necessarily so.
No person who is disabled requires or demands the full and undivided attention of another.

...........NO!  YOU ARE NOT!...........

Many just want an easier way to cope which requires  a tad bit of help.

The vast difference between what a disabled person perceives as need and what an abled bodied person perceives (with fear of demand) of need by another individual are two entirely different concepts.

I can illustrate with ease some ideas around how help, assistance and care are not expensive of time, energy or money.

Anyone would have a lunch out from time to time with others and banter and chat.
The only difference of providing this for a disabled person is a bit of arranging around schedule, accessability and time frames.

The lunch may be nearer to home, may be shorter and may require a bigger transport vehicle and just a tiny edge of time both sides of the lunch, but actually if the lunch was to become shorter, no time is actually wasted.

The rest is simples.
The banter and chat can be equal and all come away happy.

i know someone will then say there are different levels of disability that require far more input.
if so, and yes so, then the intervention can be less frequent, less complicated and others can step in for a slot if arrangement by phone can take place.

A sickie may then need or require a bowl of soup to her/his home.
The banter will be less fraught for all and cuts to the chase.

To abandon completely to lonlieness in the face of laziness is just that.
Abandonment which is not justified is unhelpful and causes harm to both parties.

Family and society breaks apart when perceptions are twisted in such a way.

The disabled are as a group 'hard work.'
..................NOT SO.............................

Because............ (people are all hard work), 
...........................it just demands a bit of heart.
most don't really like work, but heart is cheap.
There is not a difference to the quality of engagement, the quality of acceptance and the quality of love when someone becomes sick and unwell and disabled.

when two people fall out especially if they never have before and its over disability, need and desire then its about perception of input that usually is to blame.
Most are not asking a lot just a bit of accommodation and tweaking of ways of engagement.

Disabled people need to be part of society as equal in a way that brings enjoyment for everyone.
None want antagonism, quarrelling and pain of the different kind.
most just want to be part of the world going round until it stops for you or us or when the world stops anyway because we also are crucifying it!
That is another blog entirely.

I bet you will find that blog is about the same.
Work if another way is can be found, a perception of cost, perception of time and perception of hardship.

in essence, humans seem to demand an easy life.



 Some get it and a vast number have a life of pain, anquish and abandonment on a grand scale.
hardly fair when we are social beings and consider ourselves as such and enjoy being so.
it seems though
.........'it all depends......'
..............so it does............
........IS IT TOO HARD WORK THEN?..............

when shock decides the value of LIfe

SHOCK.
Electric
Pain
burning
HURT
AGONY
Electric
its between TWO of US and we don't fully understand how we got there/here and how we get out, alive or DEAD!

Can i image living like this for the last decade of my life?
No.
Do i need it, do i want it and do i actually deserve it.

No.  I am in a London Hospital trying to find out why i am so Rare

tell me this as well....
why should two individuals in so much pain be neglected in such a manner to have to infuse their lives with the Pain of SHOCK now and every day ahead until the day we die?

We look at one such individual, my twin sister.
she spoke at the UN.
She had a TV documentary made about her.
she won the Emma Humphries Memorial Prize for outstanding contribution to women in the UK.

where is she now?
she is sitting watching the TV on the top of a small hill in a small village.
she is disabled, sick and very alone.

tell me do you think this right?
Did she mean to end this way?
No she didn't.
why did she?

I tell you why...because when you are sick and disabled the CULTURE now is to blame us (yes i am in the same rocky boat) for the ills of the world and for the Pain of financial loss within society.
this is not what has happened.
My twin paid her taxes, albeit she began working very late and she has her reasons for this.
she was true to her calling 'to do good, if i can, and when i can' and she did just that.
she didn't gamble on the stock market or do insider dealings, defraud or sell us to the highest bidder.
she worked hard, steadily improving lives of vulnerable women and children.
now she watches telly on the top of the hill.
she hears from very few people.
she gets out even less.
she doesn't drive.

she hasn't a reliable wheelchair.
she is alone and she has been left.
Mary Raftery god bless her, wrote a piece before she died at how the Irish doesn't even see a person named Margaret and Mary lauded her in the Irish times for getting the Emma Humphries Memorial prize.
but the silence of our nation to those who have received due honour for good works is deafening.

she has done alot for others isn't it time someone did something for her, give back to her a modicum of what she gave of her self to others? My dear twin sister, lying in a London hospital trying to find out why she too is so Rare.  the despair of not understanding or knowing any reasons.

and why should I, who was abused, in psychiatry for all the wrong reasons, be near her and see this and feel this pain too.
why should i be penniless now because i wasn't fortunate to have the education, the ability to move away from Ireland and then i was dumped unceremoniously into the hands of psychiatry because i too was vulnerable and scared and had a reason to be.

why should two individuals who did actually work for others be left in such a mess at the end of their lives?

we are in shock.
we are in pain, both physically and mentally.
we are very alone.

we are only 61 and in real terms most do not have to face this so early and certainly some do not face disability or pain or illness at all.
they may face old age, i feel that and more.

the singing ambulance man tries to cheer us up when he finds us in the corridor, London hospital recently

my fate and it is fate will mean that i will have to try and so will my twin have to attempt to find the way to deal with a spare decade of decline.  if i see it now for say the past few weeks, i would hate to believe it will be like this.

waking and sleeping seeing no one, not doing a lot and being too unwell anyway to do much at all.
imagine being so jaded tired that you cannot turn over physically in the bed.
imagine being so tired you weep and tears fall knowing you have to be the one to get off the sofa and go make a meal.
imagine being so tired knowing that there isn't a lot you can actually DO to bring your eyes back in focus when they go out of focus due to exhaustion.

Pain, real physical pain makes it impossible for me to sleep, my body is an alien thing, turning me into a twisted heap, trying to get comfortable and never being able 

to you cannot do anything with extreme fatigue and we are this way because of Mito Disease.

we are this way because our energy mito cells are dying.

so when an energy filled life and style ends do you just forget that individual, leave her to die alone on the top of a hill despite all that this individual has given to society.
and do you allow it happen.
because as i see it, you are allowing this happen to your own.
your very own.

 I will sing to you and so he does before i go to the theatre for a small op to take muscle from my thigh, a quest to find out the reasons why so ill and so so tired all the time....but he may sings but only he does for either of us

st patrick's day 2014

i find it odd, every year we have a colouring book of only green for one 'glorious' day and then its grime again.

do people around the world REALLY understand Ireland and who is this patriotic outpouring in aid off, i call it 'boil over.'

i think to admire three minutes of video expounding the virtues of Ireland is missing the point entirely.
we are more than the sum total of green, the grass and the hills and bumps of Eire.

we are a tiny country that seems not to be able to manage itself, but seemingly its people do well once they leave.

what that says about us is anyone's guess.
the guessing has been done of course many times, conclusions reached and we'd be eggits if we didnt know why.

we are a country rife with distress, dysfunction, corruption and crookery.
we are a country with brilliant artists from all disciplines, theatre, literature, art to a degree and of course poetry.

but we are also a country of people who know the saying 'you scratch my back and i will scratch yours.'  the country who approve of 'brown envelops' because these still appear at everything from local county council levels to the Dail chambers, charities, banks and all manner of organisations.

you just have to wave a few wads of cash or other favour and another will be done unto you.

and this kind of economic madness caused the economic mad crash.
speculating too and trying to cover arse is also a good irish trait from cheltenham to making phone calls and joking about how you conned the government and calling it Moolah.

we are good at these things.

St Patrick may have banished the snakes, but he left the oddest kind here.
the christian nation of saints and scholars.

Will i be celebrating St. Patricks Day.
not for the reasons many will, no.  but i will go and see who turns up and out for the parade.
very good snoop value indeed, and a photoshoot opportunity.

to say i am disappointed to be calling myself Irish is putting it mildly.
i am cringing with embarrassment at being one and sending another eggit half way across the globe to shake the hands of you know who.

we do this flight of earls in modern times, yearly, all the quacks queue up for the gangway and gangplanks of planes rushing out for the party, leaving much devastation at home.

the mighty crash has left a huge amount of our youth leaving our shores.
the mighty crash has left behind poverty not seen before since famine times.
modern poverty - house repossession, bankruptcy for young families, small business men and women, small shops closing, large factories and work sources closing.
streets emptied of retail outlets.
Disability pensions constantly slashed at every budget.
mobility allowances being stopped.
small allowances for the elderly being eroded time and time leaving many without communication with their own families, without money for heating and food.
many now worry about health care and provision of end of life care.
A & E's are frightening places of danger.
hospitals are brimming with bed blockers and these poor victims have no place to go so they lay in wait.
things like hearing aids are now out of the reach of many.
wheelchair provision is being fought for with bitter fights between embroiled hse staff asked to tighten control on their budgets and despairing sick and disabled.
anger in all camps really with work place contentment at an all time low.

patients being sent obnoxious letters by overpaid consultants who are also overworked but its not the fault of patients who ask for care and they cannot cope.

we have the worst neurological care provision in the whole of Europe.
no green beer will blot this one out my friends.

tip the glass and tip the Irish for they need it badly.
begging do they go our ministers, ministering and grovelling to the rich countries on our behalf.
Buy up something of ours, they squeal, and they do!
our dogs, our zoos, our trees.
our country.
it isnt Irish anymore.

We do not own our country, those that do are just about every one else bar us.

the Tricolour should be multi-coloured but there are too many colours to design a flag with.

So Slainte for the day that harkens worldwide.
from the Ban of this Ti.

In this blighted house: Chritmas is over-2014 becons

In this blighted house: Chritmas is over-2014 becons: Yes, I'm pretty pleased too.  It's exhausting to one soooo sick. The stress of it mind-boggling when everyday matters like putting o...
a connect to  my twin's blog another 'must read'

there is more in society than children of the future

why in ireland do we worship the children so?
we give all under five a free medical card INSTANTLY, its illogical.
we give all babies and mothers such profound care in the public health system that the poor nurses do nothing more than baby clinics for everything these days, leaving vast amounts of vulnerable unattended at a fragile part of their own lives.
Mothers and Babies actually do very well in this country, there will always be some that are not doing so well.
but we do know for sure, most people in the catagory of disability, ill health and old age are not doing well at all.

Let me consider one group as a group but they are indivduals, equal to you and i.
they are what we call 'the elderly'
remember too, that no one is 'disabled,'  no one is 'vunerable'  no one is 'needy.'

why do i say this?
because these are labels.
we are People living from birth til death.
when adverse circumstances occur we are pigeoned then, so that we are 'seen' easily or in most cases not so easily.

we lose part of SELF when we become part of 'disabled,' 'elderly' vulnerable and needy.

we are all humans.

so why then do we forget my biggest group for worry, the elderly?
tell me why it is ok never to think of the elderly as needing as much if not more care than the under fives?
why are we ignoring the parents of the generation that now has under fives.
why?
are we actually forgetting them for a reason and if we know the reason will someone tell me after they have read this.

because when we 'forget' these groups, and the elderly are about the most powerful. we forget what they can offer society.
no, we may have to pay for it, but then all service providers do get paid!
what is the wealth of the elderly?
how valuable is it?
it is vast.
the elderly oose wisdom, through their ways of getting by, the ways of passing time, the ways of education, detection, instruction, giving and seeing.
they will have seen far more than an under five, therefore they could give the children who have past five to say under ten a wealth of experience of how it can be done, if modernity has worked.
because not all in the modern age is working.

certainly to produce mini emperors and queens, is not going to benefit society long term, for its an unbalance view which will become a type of psychopathy and sociopathy, people will actually not be able to feel for another, if they believe only they count, and thats what we are now producing.
children who are made to believe only they count and that the world revolves around themselves.
they are going to get a great land when they reached 60 and onwards.
they will be dumped, and by the time they get possibly a decade earlier than this the way society is running so fast they will be dumped sooner or exterminated as useless sooner.

they then will forget that they created this for themselves.
what the elderly can and do do for us is pull in the reins and make us think of consequences.
and the consequences of divorcing from family of all ages.
within the group i speak there is unspeakable loneliness and global neglect.
not only have the children abandoned the very people who have given them everything so too has the government and society.
we corral the elderly into nursing homes.
these are not homes by any stretch of the imagination.
they are a form of control for cost effectiveness, and even that isnt working because its not cost effective.
the children of the day think the elderly are cared for in these places.
they are not.
the only thing that happens in these places is, that they are kept alive longer, to realise how lonely they are, longer.
and we do this to them.
instead they should be in the hive of activity,the centre of the family, embraced for their contribution which is anything but small.
they should be in their homes, with the help we can give them, not neglect and distain for staying alive longer.
we are creating a society that breeds neglect at every level.
and when this happens society not only loses soul but loses the chance to fully understand.
we are producing a society where more and more are bored, lonely and on their own for too long each and every day.

if we could understand more about why elderly are important, we can make their lives a living joy and healthy living for their end.
rather than the misery that detachment from this group has caused, this same detachment coming sooner with each generation until not only do we have the misery of detachment, loneliness but the misery of living, sooner rather than later.

we must embrace everyone as equal, and that means our elderly.
our grandparents and parents all those who never married, the aunts and uncles and then we all will truely be alive with connectedness to the wealth that if variety in the human experience.

embrace the elderly for Being human is being alive and being elderly is being human wanting to be alive.

bankers, bailouts, charity and disability - dirty words

to me, fighting is the disease of being who i am.
it reluctantly is part of practise, part of knowing there seems no other way.

what do you think i may be fighting over?
it isnt anything that most would be because this part of most lives is relatively well managed and controlled so that it isnt a difficulty problem or either isnt really on a personal agenda.

one day it could be.

when that comes, dont say i didnt warn you because then the disease will sicken you to the core and leave you war weary for ever more.
there isnt a let up once it sets in.

bailout glory is not the glory of the people.
its a glory of 'construct' to the powerful and to those that way to feel 'better' rather than 'dutiful' and 'caring'
being a politician exhonorates you of the latter entirely.

but then who is dutiful and caring.
the people.
try.
get together and raise money to fill gaps but the gaps should not be there, because the money is there.
funny no one knew this!
the diseased did!
once you try to surgically remove this disease new thoughts are coming to the fore, and further investigations take place.
everyone with the disease do investigate and themore they do the worse it appears.

occassionally we see it set in stone in the media.
how long it stays in the collective concience is a bit less well determined.
i should think not long because collectively we are not such a diseased nation to allow it impinge on personal life.
but here it is, stated in the media and not for the first time.
this is a warning.
that the disease will in Budget 2014 are being cut services further, care packages, equiptment and much more will never be available again.
the government of the day are abjucating their responsibilty but causing a culture of vultures in a sector that never was to be a business nor a top up on the citizens of the state who are affected by disease.
Disease here i mean three things and very forcibly i state it effects every family in the land.
its called disability, becoming part of the elder section and being very vulnerable, sod it if you fall into all these catagories as i do as too my twin sister, who still fight the disease and the cuts
we still on the fight for the powered wheelchairs which are as in this article states part of our rights for nothing has changed bar the fact we are losing ability to walk!
please read how eloquently it is put here and excuse the typos in this missive, too tired to go back and correct this time.
talk soon
http://www.independent.ie/opinion/columnists/gene-kerrigan/its-deja-vu-on-charity-chiefs-big-bucks-29839158.html

the irish bailout- is it glorious? i don't feel it.

ireland now is exiting this bailout which caused our county to land on knees.
the trouble being, the knees were those who could least afford this.
we saw far more homelessness, we saw disabled and elderly being crucified and will be crucified for many years in the future because indeed we are told already that there will be more social and medical health cuts in budget 2014.

i do feel that the austerity has been profound for the least able.
we didn't have equable responsibility as a state.

the rich saw no cuts.
no cuts at all.

when people talk today in the media, we are talking about the positiveness of increase in jobs and economy.
but not one person who is working within the disability sector has been asked questions in the media, only those in business, policy makers and economists.
who is asking those who are ill, disabled and vulnerable how it is to be exiting the bailout today?

i can say on the 'historic weekend ahead'  that i have had prescription charges trebled in the cuts.
no services provided for my health care which will make life or my health anyway better or my quality of live, health any better.
i am being denied even a wheelchair of any use.

i have at present a wheelchair so clapped out and reconstituted that it continually breaks down continually lose body parts and now been told that before released to me, that the bolts which hold the wheels on are in fact the wrong ones.
yet always the HSE has consistently said that wheelchairs are vetted by engineers before being allocated to disabled people.
this isn't so.
this one wasn't and this one lost wheels.

i think people have to start to wake up and feel for us.
because as a commentator said today we better not sleep walk back into the future.
can we ask the irish nation not to sleep walk all over the people who are your brothers, sisters, aunts and uncles, your wives, husbands, grannies and grandfathers.
because, believe me we are leaving a vast swathe of our fellow human beings unaccounted for in quality for their life which is about the only life they will have.

when i think about preciousness of life i do look on this as equal for everyone.
not just those who can contribute to the pot.
not everyone is equal in this and a lot is down to luck and good fortune of who you were born and how you were born.
but does that actually say 'well that is just tough bloody luck for you, none of my business.?
this is what is being said.

I have not, ever in the past few years been supported by a family who have the means to support two very sick ladies with chronic, neurodegenerative disorders.
neither my twin or i have received the following:

a gesture of a meal at the family homes and extended family homes, only at festive times.
a gesture of a trip out for lunch, theatre, film or a drive, not once, oh, ah yes, once and we had a ball when we were taken to a film "the life of Pi"

further, we have not had support by way of anger by our family members at the state of the wheelchairs we have been provided with, instead we have received the anger from siblings for trying to start a fundraiser for these chairs.

i have not had nor has my twin, being delivered a simple meal to either of our homes, by more healthy family members, extended and other so that at least we might have a meal we didn't cook, have to go to shops and struggle through checkouts for.

we have not had either a family member support us to a doctors appointment, speak to a medical person about our situation and ask questions about our future, or our health or our disabilities and illnesses, they wouldn't be that interested and some hardly know what is wrong.

we have not in all these years had help by way of  another family member suggest a carpenter, builder, van repairer, electrician or other when we needed such advice.

we just have felt totally alone in everything with the only suggestion ever made being we should go into the funny farms of sheltered accommodation.

it is fact...we are in dangerous times for sick and elderly and disabled.
even some of the carers we have, (and we have only a limited amount we are by no means being 'cared by the state.' a belief of the wealthy family and extended family), been told that most sick and disabled do have family support and its tragic that we do not.
this has been said from the district nurse, by the doctors we have and by the home help providers.

they all tell us that we are unfortunate because in these times, those who have family fare better and its rare to not have family.

do you think then that my twin sister and i are not grieving right now?
we are, we feel the loss of this support and never having it when we could do with it.
we feel frightened of the future.
we feel alone and frightened of the future.
we feel frightened of the level of health care, for honestly, those who have family who can demand better usually get better.
when you do not have this behind you, you are at the mercy of the state who couldn't care a shite about you whether you lived or died.
if you have family who cared, then you have a chance or half a chance of living because they will make sure the state will not kill you off.

if you think this is extreme thinking, its not only my thinking, its that of others who have said the same and to me and also when in conversation with disability groups, media, commentators who are not the commentators on the radio right now, they say the same.

we as a nation need the support of each other more than every before.
my twin and i have no one bar the few home help ladies who come and help us for the few hours they do.

there again the family can retort that we are 'lucky' and feel fully convinced that these helpers are doing everything, that is cooking, cleaning, washing and shopping.
this is far from the truth and is self soothing perception to help them and help them get off the hook with ease.

what about love in all this?
isn't that too part of being family?
we don't feel loved.

we have been told already that one sister is taking out a barring order so we wont go onto her land, but this threat has passed and never came to pass, but it was said,  because we shouted in her car park and some of her staff might hear.  We shouted for good reason, not because we were obnoxious.

we do not feel loved when we were not invited to a family wedding and nor a 90th birthday to a now deceased aunt we adored and the pain of being left out is enormous for myself, i loved this woman and i was not there for a great occassion, because i was not invited.

we do not feel loved for being left out of not attending a sisters wedding before her husband of decades died a horrible and sad death.

At christmas time its about 'where and what will we do with the twins, ' in other words, who will have them.
and sometimes no one has.
one year our first away from the county of our birth no one had us, we were together alone and saddened.

this year i am having my brother and his family and thoroughly looking forward to this and hope i will be able to do it well given i am so jaded tired.
but i am looking forward to this.

but we have all these sorts of things happening right across holy ireland right now.

wealthy still wealthy.
some have support and others completely and utterly abandoned no matter what the social class or criteria.

we must all pull together to give everyone a chance for equality.
that means the disabled count.
the sick count.
the elderly count
and family count.

all count in a fragile world where we are living for only a very short while.
does it feel that fair that some are abandoned to constant pain, struggle, fear and lonliness and poverty and homelessness and suffering?
especially when we all can do more and do our bit to make it easier.
if you helped you are giving and the feeling of giving is more than the feeling of taking.

i am angry tonight.
we will as a country not change much before i die.
and i am dying believe me i am dying and dying in pain and misery left as a piece of shit amongst both family and society.
the only reason why i have a roof over my head is because of my dad's wonderful gift of leaving my twin and i the home of my sister above us who died prematurely.
we owe the roof over our heads to the dead.

but myself never having worked, only have a disability pension.
that is it. final.
so will my end be that.
final.
i am a frightened lady.