Friday, January 11, 2019

38,2000 have read my blogs since I began - here is another

I want to go home
Happy New Year

The eve of a bright new dawn I was asked  would I like a hint as to what day it was to be the following day!

I kid you not.

Someone had had a 'senior' moment and thought the best way I was to be cared for in the Irish context during a daft period of Christmas/New Year was in a 'state of the art' nursing home for the elderly.

"Happy new year" I responded directly to this hint.

24hrs later I left or fled, take your pick!

I wrote an angered missive to the HSE, yet in retrospect they did me a service - proving a direction I will never take and I also said angrily,  I would rather shoot myself between the eyes.

It's been a grinding decade and more. So much promise when my twin returned to Ireland after 47yrs away.  So much joy anticipated, so much living to be lived and grasped on the cusp of the impossible - disability in Ireland.

I wanted it all, the fun, the happiness, my life to ever begin and I felt all my tomorrows had come together the day my twin returned to her homeland.

I was SO wrong.
The break up of everything, my personal home, my personal community, my way of living, my strategies and coping skills obliterated because the HSE determined I could do better, that is - have a better quality of life if I asked for a safer home to live in.  (they feared fire in an upstairs social housing unit).

I wasn't for turning.

-  but I turned - through heavy persuasion.

Again, the HSE had one of their first senior moment when they didn't seem to be aware I had landed like a lamb to the slaughter in a dangerous situation far greater than fire.

This wasn't my idea of a better quality of Life

I was without the ability to even open a wheelchair inside to full width to sit on or do anywhere there, no wifi, no tv no nada.

Even the ambulance couldn't find me.

So embedded, left and finally shot at, I fled.
Though very sick, I have always explained my needs - so have consultants, far too many - so too have advocates - far too many.
now penniless, the HSE followed, and words from the HSE followed and to the present day words spit out repeatedly against the all the findings of the "Brophy report" they do exactly what he castigated them for doing in making 'wild sweeping statements.'   My life is hell and burdensome.

There is no attempt to improve it, though I fight on, as we all do and must.
There has been the 'talk' and the 'ponderous,'  words such as 'complex case.'  
All serious in this serious complex case of ours, I think is simple from this side of the fence, very simple.

I am not being peg fed, I am not being spoon fed, I am not been lifted during the night, man handled in having to need washing, dressing, turning, nothing like that.

I simply am posing problems they seem unable to solve or unwilling to.  I cannot determine which - yet.  Even after ten and more years.

I am in hell.
That is all I know and I know my age (66yrs) and I know the year (Bravo, Ann)!

I want 2019 finally to end the hell and I snitch a bit of happiness back home where I belong.
The duty of care was to follow at all times directions made by medical personnel who named my living abilities, disabilities and needs - all ignored the first time round and still being ignored the twetieth time over and more besides.

I will give them a chance to shine, I think they would like that.   They would have to want to.  I cannot do that for them.
Its not impossible.  We are not sorting out the complexities of the USA, for instance.

There are many good people working within the ranks of the HSE.
So why can they not sort two sisters 'OUT?'

The battle now for basic medical care and a diagnosis, treatment,  therapies and social care has been pitched for too long.

I was left during 2018 to help in the home equal to that I was receiving in 2005 when first ill, and some parts of 2018 saw less and yet I decline by the day.

Home is where I want to be and where the 'WHO' talk of as being a place a person is familiar and comfortable in, within her own kind and what she is used to.

2014- We are sick here in Queens UK and we are sicker to day - give us the care we deserve
I need care, a European policy and directive on both chronic care, neurological care, and rare diseases care has been embraced by Ireland, but the shining has yet to come as in 'C'mon, HSE shine on these policies, and shine them on my horizon please.'

Shine through on paper in all fields and disciplines is no good, the books are closed and fail to reveal the light of it all.

This isnt what I had planned for my life as I lay in a UK hospital bed and returned to Ireland to - Nothing.
Shine where it needs to, on the citizens of the state who beg for the help.

I beg my life will change this year before someone or other is standing over my corpse.
(an event I envisaged towards the end of 2018 lying on a trolley in A'E with chest pains for over an hour without even a name tag.   Lying there thinking that next time they saw me could be in the hospital bushes having made the grand escape.  

Luckily I bypassed the bushes, made the escape and asked them 24 hours later - "did you miss me?)"

Naw not at all, doesnt matter if I had my own senior moment and a fit in the grounds ending pitched headlong into their bushes, aged 65yrs, a senior.  (it wouldn't look good for the doctor stake holder hospital that).  Yet they didn't care a toss, and didn't miss me either.

Please get me home.
Please get me a diagnosis.
Please get me treatment and care.

Bring on the sunshine, kindness and care.
Out black spot with the constant abuse and derogatory remarks and the prejudice against me.
It had always been YOUR shame, the way you treated the Kennedy Sisters, always.
It's a big black spot of the state on fragile lives, ending their lives in such trauma.

It's a crime.
its their crime against two sixty six year olds.
I hope they shine.

Surely to God someone in the organisation is capable of that?
I may be wrong, I may be wrong, I may be very wrong.

Truth is, (do they like the truth? NO,) they have destroyed me, my life, my hopes and taken away the best part of ten and more years, the lot of them - to date.

 I want to go home....I want to go home...I want to go home....HELP me achieve this in 


bring back this van to pick up my already packed boxes in prep for getting back to where I belong...

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