Tuesday, January 29, 2019

HSE meeting - a new turning point

I have had enough
Turning tables around CAN produce a 'turning point.'
Perspectives change and a new way begins which opens up new thoughts, ideas and people are seen I hope more as human beings, rather than 'done unto.'

we started the day and week with absolute dread.
This has been a fierce fight, for many basic healthcare needs to be met and more so too, perception of us as human beings who are only wishing for healthcare appropriate to the disease process.

given we still have no diagnosis any turning point is welcomed in this 'frey'

the tables in the room were turned, from a board room meeting to a class room style teacher at top and pupils watching and listening.

ALL listened!
the orchestra conductor was a seasoned consumer of the HSE care services.
Seasoned in debate
Seasoned in understanding inch by inch the methodology used.
Seasoned in the language used, against her and the absolute 'fed up with that woman' approach which creeps in when all consumers want is care, sometimes only basic but sometimes very sophisticated, e.g. diagnosis for rare diseases.

the conductor asked me to read out how I felt.
So I did:

How I feel

I wake early these days and go to bed late.
I am usually in pain, always depressed.
Dreading another day of more of the same only words will capture how I actually feel.
Helpless, hopeless, fractured and traumatised.
Suffering goes without saying.
Struggling is not my lifestyle choice, but its added to this list.
An agonising wait for the 8am postman and the jump in terror as the envelop slips through, dogs bark.
I open with sweat bristling my forehead.
Will this be a day I have to flee up to twin in collapse or crying.
HSE ‘stuff’ Doctor ‘Stuff’ yet again.

Isolated from all I had known, I am lost in hostility all around.
‘Leave grey stones’ scratched still on the van.  Where the hell have I placed myself.
Beaten and broken, I look out with empty joyless eyes.  I have long gone from loving life at all.

I attempt to live and thwarted daily.  HSE etched on all surfaces, even my brain.
My physicality deteriorating four years off seventy I just want to go home, be where I long to be and amongst safety, security, peace and calm.
I never expected this or asked for it.
I am in a hell.
I attempt to soothe some hell from my twin sister and I try to phycialy fill gaps which I know I cannot do anymore, more tears, more pain in my limbs as I know I can’t do all that is expected of me.
I want to sit on the pavement and just weep.
I beg inside for the spiralling pain to leave me, someone to save me from it and let it all go away and I get back to what I know.

I chose art for a reason, beauty, skill, aesthetic, it comes naturally that I use vision over verbal communication, I do what I do well, and I want to leave the rest.
I never used language to any great degree, I couldn’t.  I didn’t hear it enough to form good sentences, but then I heard enough to understand and others firing at me language and prejudice needs answers I couldn’t give, articulate and I was left in a heap with no skills at all, I felt beaten down to a pulp, and its ongoing and I am bereft.
This is how I feel, it isnt a one day wonder, its permanent, and its persistent, its painful.

Terror is a word I would use to describe my level of care across the board and the basic assessments and dismissal

The snot and tears ran in uncontrolled rivulets down my cheeks, my soul was bursting in grief, my heart thumping in agony and I was weeping as if it had come to this head - to them.
to ask them, to listen I could not take any more.
they listened.
the sensitive bit was the pensive responses which indicated for once - at last - I was heard.

I tried desperately to stem the stem of body fluids around my nose and eyes, with a lovely scarf I wore, wiping hopeless and more followed more, in drenches.

I do believe they felt shocked and saddened that so much was inside needing to be heard on how I felt.

its been a long time like this - ten years.
so its a lot to get out in a short two minutes.
its shocking really that any very sick chronically ill individual, sits there bearing her soul to basically strangers who hold so much weight in their capacity to give the medical and social care mandated by the state for community care.

if this does anything now to move forward a pace of care provision that is swift I would welcome it so much.

I am after all four years off 70yrs of age and ten years of stalemate is not something that I am happy about.

nothing more than bone tired
life moves on not goes backwards, those years now are lost to me and my twin sister where quality too was snuffed out in this tragic fight for the care and needs to be met.

to be met with anguish and jumpy anticipation by me on the next accusation and the next derogatory statement and the many in the past going back so long.

it has to be unpicked and examined.
because it is so endemic even doctors begin to take up this small island approach of gossip, recently hearing a consultant had investigated me, yes and found information from 2009 which is unreal.
given the state of the nation, the over worked consultants, the panic of so many people in a public healthcare system which is failing so many a consultant has that time to ring three different entities on one patient and then write humdingers to the patient says a lot to me really.

but baby steps have been made.
today my head is singing.
the menieres is bizarre, the tinnitus is a band gone wild.
the exhaustion is a dancing awfulness on a moving body that wants to collapse.
I felt beaten down to a pulp, and its ongoing and I am bereft.
This is how I feel, it isnt a one day wonder, its permanent, and its persistent, its painful.

Terror is a word I would use to describe my level of care across the board and the basic assessments and dismissal

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