Monday, December 24, 2012

berries and bury

well tis christmas, and we drawn to the red berries for the birds on prickly branches, berries for the turkey  of a sauce and berries as in cheery cheery drunken cheer of all that it means,  Christmas.

Christmas, a time to welcome the family. celebrating the joy of birth and rebirth, to offer  christian action, (even if it's this one family dinner) and then my friends retire:
back to the hangover
back to the far flung countries
back to work
and for a lot - back to turmoil, sickness, strife and loneliness and this final 'back' is actually not so 'back' but 'continue'.
The ban has been lifted and i am allowed be present at a family dinner!
Woa, until one time in the following year when i lose favour again and believe me i will..the ban will resume in many ways.

Right now i consider and look back at the year - the year i was deemed a criminal for shouting for help to get a puppy dog off the road, which resulted in the home help walking out and never returning.
Resulting too in the home help provider saying i was too dangerous to allow staff in my home.
Resulting in this Christmas i am left all alone to do my chores, light my fire, build my fire and carry coal buckets for a full two weeks.
the different home help provider has left me high and dry.
Because she is careless.
Another difference i have to face with the identical twin, all because i have asperger syndrome.
i have asperger, poor communications and i am discriminated against for this presentation. A presentation that gets worse when i am very distressed and tired.
Lets see what else i had to face over the past year -
the adaptation grant - a manager Occupational therapist in the wicklow area has decided in her wisdom i should have a wetroom, this being against my will and unnecessary and i seemingly have no say in this matter and she will not meet with me or speak to me.
The distress of this cause me to postpone the grant process until the very last minute.
A deep trench mark the boundaries of the extension and yet i still have this fight into the new year to retain the bath.
this is still leaving me stressed and worn out with sleepless nights and a christmas fraught.

to know too that the community primary care team run from me as i try to clear my name and because of this my the distress is too vocal.
Try to have my home the way i want it for all the other disabilities, the Disress is noted, i am far too vocal.
So not even the social worker will speak to me!
I am far too vocal and the manager of this area will rather speak to twin about me but not to me.

even thought this vocal distress is borne out of prejudice and injustice as i am treated far worse than twin.  No one ever gave me a chance in this county.
this county has done things to me that i never experienced in my last.
this county is Wicklow, the land of milk and honey, the 'garden of Ireland' many coming in the following year will take trips into the garden and admire all the beauty that is here in abundance.
What they wont see is the very provincialism that is rife within the irish psyche,supposedly  our educated people.
the ones leaving university with a degree in occupational therapy who say the reason why i need a wet room is because i have a neurodegenerative disorder and the reason why twin doesn't is because she has parkinsons!

 we have team care providers withdrawing staff from a sickie, who once had a history of BEING in the psych system but never having a psychiatric illness.  She suffered depression due to social isolation.  No higher form of professional was asked of my 'danger status' and so i am blacklisted forever, as no consultant who could assess me as being dangerous or not was proffered, in the absence of a fair trial, i am blacklisted.
when one is deaf and raises her voice in alarm, it is seen as 'danger' aaaaah, "get my home help worker out of that place!"
to be considered a tyrant is dreadful.
imagine waking daily to understand that the educated nurses, occupational therapist, and all consider you a danger, and you are avoided.
the woman who stayed close to her home and never went out.
the woman who never saw a person ever from day to day and now finally who wants to do this, having arrived in a new home, new country with my my first efforts in freedom has been stymied by this county that in no other words can describe as ' bog irish ignorant'
i have to deal with the emotions of fallout, resulting in further trauma.
i wake knowing that i am unloved by family, neglected by family, avoided by the care team and also having things done to my new home which are violently against my will.
also knowing that a neighbour four doors down has pulled her staff for no good reason.
in all this i am powerless to effect change.
there is nothing i can do if the professionals will not lift phones, meet me even with support, or discuss the way forward.
there is nothing i can do to clear my name or even get a basic care package in for me, which doesn't require a battle like this, being left for christmas without home help cover for a full two weeks, and when i try to ask my PA workers to fill the void, there is nothing i can do when they refuse to answer the phones, a situation that happens when they dont want to be free for work.
This is about as subservient as you can get.
This is about as poor as you can get.

there were times i wanted even yearned to go see the doctor for support, but he resides in a different county and i was too poorly to drive over.
this county found not one doctor agreeing to take me on.
a fact shocking beyond shocking. this not because of my personality presentation for they never even allowed me one consult, but on hearing all that is wrong with me, they wouldnt have me!
when ignored in life how can you have even a good life, how can this equate to quality in the 21st century when the world is awakening and knows such things as autism spectrum disorders, but such modern thinking has not hit  holy ireland.
Ireland with stigma and ignorance leaves ann, without the means to celebrate her first christmas here in her home as the build was delayed as we fought over the bath.
no wheelchair as the ramp has not been put down.
no home help because ann screamed trying to get the twin's dog off the road. Ann with a mobility difficulty and found it impossible to do this without help from home help who was inside.
a christmas knowing that the fight will resume in the new year but right now - i have no home help cover for christmas and the twin does, and i am just as sick.
i despair and am very very depressed.
there is no point in pretending it other.
i will not be able to enjoy christmas, with the weight i have on my psyche of being disliked and avoided in my new county.
where getting help is doubly as difficult as it is for my twin.
and i beg to differ, in saying it should not be so.
when you are sick.

Monday, December 17, 2012

a walk in the Black Forest and bloody twinklies

there is no doubt about it, its a dark place to be - the forest, any forest especially in dead of winter.

when a forest can be the sea shore in december, a bright day in june or an autumn day of living, when its dark its dark and can get very dark indeed.

where was our drowning out of light for us twins today?
it was wet, blustery and mild, a nice trot on the strand in greystones, but a weepy one which required a gentle prod and tap on the back, two sticks stuck in damp sand as useless legs, tried out the stepping.
three dogs happier than two humans.
they ran amok and we watched.

but dampened down were we, with the ongoing struggle of our decline, too early in life and not knowing what is going on.
where is the biopsy piece of your body twin?
its in Kings and needs to get to Queens.
where is your body part Twin, well mine is in Newcastle and now is being tested for common mitro deletion whatever that is.

but maybe we may never find out what is wrong.
but certainly complacency on the part of medics is not helping as twins are stuck in the middle of communication errors and one consultant not making the request for body part and the other thinking the other was taking care of this and no, secretaries are not involved so what do you do then, months later, you give a body part, you pay for having that done and you are now minus any results from testing, thus far.
not the fault of the body part giver.

if they want any more when we are dead and interesting will they get it?
highly unlikely as they have not helped us when alive.
they cannot expect my brain to investigate once i am dead when they make my life an utter misery when alive.
why should i be a body donator when dead because i am rare and could be interesting to science.
NO, my will of leaving it is fast eroding as twins slap sticks in damp sand and weep together.

what else happened got stuck in the toilet twice, a small cubicle with twins in it together, the one sitting on needed damp cloths to brow, a massage of back, a fan of the scarf twin holds in front of her, this because one is about to pass out due to wrong food and crohns and ceoliac, one twin made a major departure from a very strict diet.
this has a cause and effect, biggun.

right world, we are in economic crisis, but does that mean the individual gets lost in misery because of this?
where is thy neighbour in all this and when will thy neighbour ever consider more than self and basically get up off arse and tend to the less able.
I really am angry that we do not do more for each other.
the disability agenda is there, what is known is there, where there are deficiencies we KNOW and darn all done about it.
YOU CAN make a difference but you have to voice and you have to act.
do not expect change without effort.
nothing comes by putting the bum on a soft pillow of sofas and warming by the fire or in the bed under blankets.
nothing is achieved by silence and inertia.
nothing is achieved by making pals with people in high places in order to maintain the status quo.
you have to bark to alert the intruder in disabled peoples' lives.
making enemies for a good reason is better than making pals for no results at all, if the pals be at the top and have an agenda to effect change, then they have to be made aware that those of us who can, will not pander to them but make them work FOR THEM>

i  am not liked terribly much and i am saddened by that.
but what i have tried to do was effect change for the better of my own personal life.
this i did and i lost out on many things in doing so but i did effect change away from gun slinging children.
i was in the centre of a violent community of drinking men, a woman alone and apart.
i needed out.
but it destroyed many things in my life but now i am safe at least.
i am angry here that far too many people sit by and do not act to help the least able.
i am furious that twins in the 21st century are left alone in Ireland, very alone with little support anywhere, this is within the community, closer community and the broader agenda of health in ireland.
neglect is the word.
as one limps by and helps the other as we shall always do.
but i am livid it has to be so hard slap in the middle of middle class ireland.
this is the ethos now of living beings.

Walk by and do not accept the responsibilty for less able.
just walk on by and forget that we are killing souls, wishing our elderly dead and depriving our disabled of equal rights through massive health cuts.
depriving the least able is what Hitler did.
he killed them all off in gass chambers.
is there anything different today i ask, not a lot.
we are starved in body, soul, spirit and freedom and that is what Hitler did, but he did it the fast way.
i am angry

we have absolutely no health care at means of getting around, no physio, no psychological help for one of the twins, no pain management, no real help in the home but lazy home helps who shave off fiveteen minutes and do as little as possible leaving the disabled behind in effectively not much better than when the home helps arrive.
there is no monitoring of this service.

we have nothing but fresh air to live on and spirit, we have that in spades.
and i have no twinkly lights for the christmas tree, there were far more pressing issues to deal with and at the end the pleasure gets left out when time doesnt allow and energy definitely is not there.
we are a weak and sad country all round.

Wednesday, December 12, 2012

budget blah and woolly hats

SO much of this country is simply ...WRONG.

and being in the thick of depression as we are now people are actually beginning to do the 'step over him/her' trot.

Literally, its everyone for him/herself now and the feeling that its there, the feeling OF it, is sensed by everyone.

all are wrapped in envelopes of protection, against the world, yet in the world, for oneself and darn to everyone else in it.

a trash time to get the coppers mentality and a trash time of self pity too of 'i am having it real tough, no one understands how tough it is for me.'\
actually most do understand, but couldn't care less if you are or not.

we are walking away from hurt and pain and suffering of our fellow human beings instead of collectively shoring each other up in this time of need.

here is an example...i visit an elderly neighbour and find him wearing a woolly hat and no heating on...he is aged 97yrs old and recently out of hospital.

who will ever see this man as meaningful or purposeful or necessary now.
I do for one, and i do so cos i feel the suffering of being cold and being worried.

this man is iconic of Ireland ALL of ireland.  COLD.

brain dead and very cold.

and 'the woe is me' syndrome goes further.

i woke today dreading it.
i slept on the sofa until 4am, restless, depressed and physically in pain and mentally out of my brain with worry.

How can i manage on what i am expected to manage on?
You can tell people what you have and what you have not, no one will listen or acknowledge you or your own circumstances, they have their own.

you lie restless knowing there isn't anyone you can turn to, you have become isolated, weary and no amount of suffering will alert others to this fact.  they have their own.

so you don't go to bed.
you scream inside, yearning so badly to be relieved of the depression caused by worry.
you do not want those few hours, if you get them of release in sleep only to wake, realise you are suffering and then burst into tears, knowing a full day is ahead and pretty much as yesterday was and the next day and the next.

there was a film once called 'the glass menagerie'  i watched it as a young person on black and white tv.
it was about a young learning disabled girl who hit behind her four walls and collected crystal ornaments.  when i saw the film i suddenly 'knew her' and never forgot her.
this is why i visit the elderly and have done since aged 18.
there is something in everyone, even if to most is meaningless.

but on a personal level you know too, that you are indeed very much like the elder man and the younger lady.  there is a bit of me there on either end of the age continium.

dont forget who you are.  you are a bit of everyone walking abroad.

but last night and every night i do know and understand the dilemma of worry, an economic and personal financial crash.
you also know about trust and about cheating and about distasteful people who are very real and you never knew they existed.

you know each day will merge one into the other.
that no one will phone to ask how you are or even visit with a cheery smile to chat.
you know this never does happen ever, not regularly and certainly so infrequently we are measuring this in months not days.

never to have the phone ring.
never to have a meal brought to your door in friendship and concern.
never being asked 'is there anything you would like me to do for you.'
never being asked out, for that meal, or stroll on the prom cup of tea.

Never being given much of anything that in whats called once, a christian society would have been most available.  The little things that make the difference, as ringing someone is in the scheme of things, 'little.'

to understand hardship, sickness, disability, lonliness and isolation all wrapped up in one is about the hardest an individual can face on a daily basis.

so remember, hardship is in the 'feeling of it.'
and each person is the sum total of everyone else. So no different.
but what is different, what makes us what we should be, (intelligent beings), is the capacity to feel for another.
right now what i see, is a trotting by carelessly and a stepping over others with contempt, carelessness, lack of charity and lack of concern.

we are losing ourselves to a deep 'SOUL DEATH' and inaction is happening when a gentle touch of care in a small gesture or small gift is enough to lift a vulnerable person to the level of maybe even considering that 'its worth it after all'

dont wrap up your troubles in a small personal envelop, go out and share em, and chat with others and discuss the possibilities of getting out of trouble and sharing ideas for the collective, to get out of trouble, and these are things we can do, and we may have something to offer the other.
we usually do...if only we would SHARE the gifts we are lucky to posess.

sorry for the preachy tone, but the days have been dreary and i believe needlessly so.
most cannot overcome or triumph on their own.
most need a nudge up from others.

Saturday, December 8, 2012


This is a considered email of a person i know,

 an email sent to every TD she has been in contact over these past few years as a person with severe disabilities.

Please see her breakdown of her basic payment through Disability Pension : 

in total 
Payments                           Deductions

Flat    193.50                      Phon:     20.00
Fuel     20                           ESB:      15.00
Laa        7.70

Tot Pmts  221.20               Total Deductions  35.00

Total amount received   186.20  THIS IS WHAT I AM LEFT EACH WEEK TO LIVE ON - not including deductions made now for  the following:

Prescription medications  : 
morphine patch
sulpha quinnine
macular degeneration meds                                                                  18etooth paste to save teeth as effected by sjogrens syndrome                   17e
fish oils  - brain nourishment                                                                  10e
eye drops  gel
ceoliac pasta/cornflakes/breads      eradicated from med list                 25e per week at least (no tax rebate as i do not work)

12 chargeable items now TREBLED in cost leaving a bill per month for myself of - 19e monthly

Cost of my medication per month will now be          18e
                                                                      _____________                              89.60 per month in costs.

my weekly pension after deductions at source is now -  186.20  if i divide my med bill in four i will then deduct again from this the sum of 
22.25  leaving me with a basic living fund of 103.95e

this does not include Coal
  -  van insurance - petrol
  -  VHI payment  ( i certainly could not quarentee best practise for crohns surgery to the public health sector with the high incidents of     post-operative infections, my first surgery nearly saw me die in @@@@@ from post op infections, see their latest rating on this matter)!.
 - phone bill.

please explain to me how on earth i am to live on this?

in the last few budgets i saw my basic rate of disabilty pension cut twice and an increase of medication payments.

to consider major items for my disability have already been funded this year 

- repair to my mobility scooter -   500e
- acquiring a Lidl rollator                99e
- spoon and knife                          37e  I refused to pay this - specialised protective clothing in  summer as the sun rays are so damaging to Lupus patients
- specialised wrap around sun glasses to protect eyes from sun, loss of moisture and cornea damage - see conditions above.
- back supports for computer chair.
- hearing aids     E1.500e eachwhat you have done to me has beggared me
                                               threatened my peace of mind
                                               put the fear of god into me for my future
                                               left me cold this winter (there isnt any oil in the tank at present)
                                               i am fearful of best medical practise at the mercy of a very suspect local hospital. 

 I hope you sleep well in your bed tonight after seeing the above detailed outpouring of one sick individual living alone in this state where the European charter for people with disabilities has not been ratified, when all other european states have done so. 

if anyone call inform me how a person can live on this with the cost of living here in Ireland higher than most of the rest of europe and add on taxes, levies, and so on so forth.

this is one individual and there are many many more that this goverment has brought to its knees in utter terror.

this email had received no acknowledgement this morning and i will await with held breath to see if one comes, on second thoughts maybe i should not, for i then would surely die for lack of oxygen.  

Don't you just love politicians especially the ones devoted to being Leftish creative, eg our labour party?
  Labour, you will never get my vote again ever.  If i can help it, neither will people with disabilities ever believe you are on our left side serving us, the ones who depend on good decisions being made on our behalf.