Saturday, March 29, 2014

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.....
             Financial worry
             cut backs
             Lack of services.
             Global pain (will explain)
             pain - again - I will explain.
     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:




   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) 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......' it does............
........IS IT TOO HARD WORK THEN?..............

Tuesday, March 18, 2014

when shock decides the value of LIfe

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?
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

Friday, March 14, 2014

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.