Monday, December 16, 2019

Christmas and a yo to you too

My mother, before she got married, did volunteering with 'st. john's ambulance brigade, working mostly in Baggot St. Hospital.
Dad and 'Uncle Bob'  two wonderful men, sadly missed at Christmas.
Christmas has never been the best time of year for me.
recently i tried to think back, did i ever enjoy it.
I did!
excitement of waiting for santa, the bottle of milk at the end of the bed and some crackers for the bearded one.
- that is, until i saw my dad come in and sit down, drink and leave.
I did!
when i ran around banging on tin drums with my twin sister, up and down and causing chaos, unit my Mum came in and put her foot down on that.
I did, i say with the lovely little dresses and pink ballet shoes with silk ribbons, the little white cardi and the fuss and pomp with table glistening shiny and best silver polished and placed neatly, candles red and lit, crackers criss cross down the centre and places ear marked for the usual sitters, and the odd stragglers of older sisters x boyfriends, present boyfriends or friends of friends - at a loss for the festive season.
i enjoyed watching my grandma coming in, laden down in a real fur coat of motley proportions and weighty and mangey, we all laughed at that - no one knew where it came from, it suddenly seem to appear late in her life.
my auntie sat beside me.  a petit little lady with a hooked nose with a poorly thought out nickname of 'Polly' but we all loved Polly unreservedly she was kind and gentle and thoughtful.
she wore thick beige stockings, a bit wrinkled, but she was a tiny person.
twice i was sick for christmas, and it was Auntie Polly who bothered to climb the 13 stairs to my nursery and pull a cracker and wish me well or sit and chat.
once even she bought me my first record, an EP with goldilocks and the three bears on one side, and 'donno' on the other.
i was carried into the sitting room to listen, and she held my head and stroked my young face and hair.  She was to me a beautiful woman.

instant reminders of christmas brings flooding back my time with Aunt Polly, and her final days.

Memories as time flooded onwards and older still, i grew to hate it all.
i became overcome in silence.

"You are very quiet down there," my Dad would say from the top of the table, it was a big table from Frescati, Blackrock where he was brought up.

it held a multitude for this yearly feast.
alas if 13 sat down, the youngest was given a small table of her own so as not to make the full circle unlucky.

we all had our designated places for decades.
i sat near Mum and Aunt Polly was to my right.
Louise, long deceased sat nearest Dad.

the meal passed off usually in gentile and calmness, but maybe not so always as the meal ended, it was time for 'who is doing the washing up - this year.'  Louise was on to that quite quickly or my twin sister or i.
i never remember the older ones doing it or even volunteering.

afterwards the drawing room was roasting in a blaze of heat from a tiny coal and peat fire.
The Kennedy clan.
b. row Gerald and Elizabeth, the eldest.
F. row, L to R, Louise, twins (we can't tell each other apart even now) and Jane
Granny got the Masters armchair and Polly got the middle of the sofa with whoever on either side.
Louise lay out front of all and Jane fell asleep.
Mags and i sat on the floor leaning up against large chairs, I usually aimed for my Gran, as she loved to stroke my hair and that was gorgeous and intimate and nice for a seven year old.

talking for a few hours, it could be testy for some and we had a 'storm out' (or two) as the years went by.
a lot of teasing went on, i didnt approve of that.

years on i was glad the ritual was coming to a natural end.  Siblings married, moved out and on.  soon the numbers were much smaller, meaningless and purposeless.

Like Christmas ritual, Sunday was another when Mum was left behind doing the Sunday roast.  Dad took us up Burma Hill, Killiney for a walk
but for tradition it carried on as pastiche of a time when i did enjoy, pre about seven years of age.

Now i am 67yrs old.  i hate it.
My lovely Dad is long gone, my mum, gran and Polly, Uncle bob and the Conans too, with their christmas eve visit all pass on by and forgotten now.
Its not the same.

i remain the youngest of the old class of the generation, waiting now to see if anyone invites me to their table, despite for the full year i may not seen them or received a phone call.
as the spinster, something like Polly, the family joke/scapegoat for funny fun of some kind, i tag along as the tagger for no other reason but, well 'we should really.'

I have bought a lovely outfit, something i have not done in donkey's years.
i bought it to relieve my deep depression of recent months and so lets hope the invite comes.

so far a nephew has enthused about meeting me and doing something of an afternoon when he comes home from London.
So far a wonderful neice has sent a letter to say she is looking forward to meeting up and having a chat, from France, over too for the first time in over a year.

i love these young uns.
i rarely see them, but hope i count to some of them.
so i wil be pleased it soon will be done and dusted for another year.

plenty too to forget of 2019, it was a ghastly year, like none other and most can reasonably guess why.

but not to put the bitter pill out for all to take, i want to wish all a very happy christmas, as some do still enjoy it and it uplifts many and rejuvenates a bonding of family kinship, so we have to remember those who are thicker than water so.
happy christmas from Scrooge, who actually is waiting for the invite and turn into a better human being for at least a day or conversion of some kind, but it couldnt be worse i say either.

So looking forward to meeting up with Katie my favourite Niece.

Taken at a past christmas, i look rather beautiful.  I look forward to meeting John and his new wife Jane soon

I will spare a thought for my next in line sis, Louise, who died too young at 47yrs

The chipboard christmas,  2009 with our meal balancing on a strip of wobbly  board between two stools in social housing

relocated to a ghastly dangerous social housing unit, margaret moves her bed from eight floor boards, limited space between fire grate and chairs, and returned home not long before with serious illness.  We never recovered from this traumatic time

Saturday, December 14, 2019

i am back in time for christmas

I am delighted to be back in time for Christmas 2019.

A LOT has happened indeed.

I have been to America - and back!

this is not something i would do normally, i don't travel to shop cheap, travel to view the sights, "nothing no more" sort of thing.

As usual not a lot has changed, but to welcome my discovery of getting back into my actual blog i will share recent images cos its a nice way to ease my readers back.

It is always fun for snoop value if nothing else.

who doesn't want to see images, out of interest.

Ann and Margaret in Washington DC

Ann puts a pin for Ireland on the Map of those who have attended the Rare Diseases Programme with Catherine my co-ordinator for the time there

Blood Letting but important

Dr Toro, neurologist, Dr Gahl, Director of NIH undiagnosed programme NIH

We are on the way!  I designed t-shirts in the honour of the trip!

when you find an important notice you 'snap' it!

waiting to board the plane, after a scary start as my twin's visa was not accepted, but thankfully it came through in time.
it could have scuppered the whole trip.

Now this is something ELSE entirely!

23rd May my wheelchair did a nasty 'twirl' and broke my leg and my elbow, and i incurred a further crush foot injury - same damn wheelchair at fault.

Not good, already broken leg, already broken elbow, never expected the busted foot.  Braced leg because i would never have managed a cast, dog and margaret gives me some comfort.

the comfort bit, telly and the dog

this should not happen in a 'modern society' on the 'UP'  a bucket/storage bin being used as a toilet with improvisation for a grab rail, taken from the main bathroom

The pain of this left foot was off the wall awful, and it was dreadful as it all could have been avoided, my too large wheelchair went into a door jam when the healthcare provider refused me a temporary smaller wheelchair to use while i recovered from the broken bones

this damn painful foot

damn foot! OUT DAMN FOOT!
I will end of a very light note ok? Or some are love notes, light notes and never to be forgotten notes, amen.

Isn't she beautiful?  My deceased Ana Chi.
A never to be forgotten 'note,' just in case doctors do forget, and have forgotten

You never forget being shot at by an underage child with a gun, given she is an adult now and much changed, i post up.



As promised the truly beautiful, my baby dogs as adults and elderly, and my lovely twin sister, scrubbed up outside Dail Eireann a few years ago, with myself on her right.

Them were the days!

Saturday, April 6, 2019

Recipient of HSE medical and community care and BROKEN by it.

I am broken by the engagement with the HSE, our Health caring services.

My twin, left and myself in RESPITE.  we got five days away in a lovely place.  we are assessed as and given allocated respite four times a year.  we never get this of course.  Despite being allocated as needed.
 it is badly needed right now.  (they say I can get it, if I go into an 'old people's home.  I won't as its not appropriate for me.  Rightly so, and I have no choice which to me therefore would be 'enforced'   respite against my wishes.
I was assessed and allocated hours in the home for care.
in three months I have lost 92hrs of care, the HSE claim they cannot find anyone to fill the slot the lovely PA left when she retired.

I am exhausted from this engagement which the HSE was asked to engage in, in 2015 and yet here we are in 2019 with little or nothing to show for it.  In fact its all getting decidedly worse.

I am suffering.
It's very real and we are talking about human beings in this situation, not monkeys or dogs, or cats or zoo animals but real flesh and bones - human beings.

we, as human beings have won the right to live as equal to those who are not disabled roughly this time last year with the ratification of the UNCRPD.    I have seen no change in an anxiety riddled life cursed by the dynamic of dysfunction in my small country.

we have sat at the mediation table for five years.  - this to me is a waste of my life.

Each meeting produces 'action plans' to be done.
we are talking about very little needing done.
we are talking about what ALWAYS should have been done and although agreed in principle should be done, its just not getting done.

The action plans have not translated into Action.

Anyone going to a talks table brings an agenda of issues with them.
This agenda is not on the scale of BREXIT.
Its on a minor scale in the, er, scale of things.
Its two human beings against a very large organisation which was mandated to apologise, sort the issues and 'own' their responsibility.

I woke this morning screaming just that.  I had a nightmare.

I have been sleeping with my twin sister on her put-up bed in her living room as my home has had no heating for months and I am ill and cold.
I woke at 5am screaming. I got tea and toast, and wondered if I would sneak out on my wheelchair and go home with my baby dogs.

Shouting out loud "sort these issues."  I found myself in a small room with a few individuals, all of whom I know within the HSE.  My twin was in the room, weeping in the corner.
I stood screaming at the main protagonist in the charade.  Explaining in my nightmare that I am on morphine and other pain relievers saw me wake in a sweat.

"Sort the issues,"   ringing in my ear.
"Sort the bloody issues."

I feel my life slipping away in a psychological mess and distress, a circus and extreme fatigue and suffering.

Many see it, all see it in fact.  Those who want to see it, that is.
The HSE felt very saddened at my 'impact' statement which I read out at the meeting before last.
But nothing has changed.

Sadness and expressions of it, don't change practical dilemmas.

It will not change, for instance, how individuals - identical twins are continually treated with extreme difference - even if both have the very same set of complex issues, bar one.  One has severe arthritis and needs hip and knee surgery, but this is offset by the other who had a very bad fall and banjaxed her shoulder, and a written report that I have other serious autoimmune diseases which my twin sister does not and require the help (support letter from a neurologist).

My sister and I understand the bad treatment of pitting one twin is distress against the other.
Its the worst sort of dynamic which can cause havoc in a relationship.
I watch my care decrease and hers increase for the past two years.

 I have been in disarray, carers coming in ad hoc and now dialoguing the mess I have lost 92hrs of care allocated to me through assessment of need from February to this April 5th. 

That is a lot of hours lost.
I am so exhausted I have asked if these hours lost, presumably unpaid to who was supposed to give it, is still 'banked,'  could the HSE use the monies to give me a 'Respite Grant' to go chill out and rest, something I badly need.

The Respite grant scheme has been changed.  It's only for Carers.
I can only go into a nursing home aka old people's home and watch patients with dementia holding dolls and teddy bears.

I am not the human being now that I have reached 66yrs of age.

There appears many dilemmas here in this case of identical twins.
Its not a complex case, its relatively simple.
I believe my rights in all of this have been infringed.
we have to see this as a 'human rights' issue now as the suffering has become so great and severe.
we are in an era which claims that we deserve our lives, to be as equal as many others.
I cannot see this playing out in mine.

What I see happening is I am slowly dying in front of the Health Caring Service Providers and they watch on and say 'Too Bad.'  and just hope I die soon.

I have let my local TD's and councillors know about my case.  Nothing changes.

I have informed my own representative who happens to be the present Minister for Health.  I have not felt his impact in this case at all.  He should have acted in his role at the top of the chain in our healthcare services.  Yes, the Minister for Health is the legal 'boss' of Healthcare in Ireland.  

I believe the UNCRPD is been breached on a daily basis across the country.

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

Monday, January 14, 2019

HSE - further questions on my medical care need answering

Who wants to go on Facebook and Twitter and splatter their details on social media?

The worst year in over ten.  The suffering has been extreme for twin and myself.
I ask 'Santa' that if we could, would he allow me us 'be free.'
Allow a quality of life befitting those with chronic disease.
That I have my medical needs met in full.
I have access to therapies recommended
I have access to expertise, which isn't here.
Ageism is against the constitution where all are equal in law and under the constitution
Who wants to do this at the age of 66yrs?

If you try and mend a broken care system for very sick people behind closed doors and it fails where do you go next in a country like Ireland?

Three years of mediation has produced incredibly little.
this is my nudge to the HEALTH CARE SYSTEM, with special nudge to my local representative TD and Minister for Health Simon Harris.

I believe with 'good will', with a great dollop of maturity, drive, sensible decision making, my life could be a thousand times better and my quality of life uplifted - BY THEM, rather than be placed on the bottom rung of the population for quality of life.

It isn't an accident I am suffering PTSD at a severe level with one of the lowest quality of life within the population - as neuro-psychologically tested by a specialist in the field.

This isn't a massive, complex problem here.
But questions remain and so I place them down to study,  for your consideration and help us twins transcend.

My sister and I are 'rare disease' cases.

  • Why did a CEO claim that 'did you know that the Irish doctors have a different idea of how to care for you to that of the UK doctors?'
  • (I certainly did)!
  • Why was every single MEDICAL recommendation since 2005 never followed through?
  • Why would the HSE Healthcare funder enable two sisters travel out of the country under the E112 agreement only for recommendations made during the 'out' to expertise, never implemented on our return?
  • Why has 'ongoing physiotherapy' never been supplied in any shape or form other than 4 sessions ever six months, the same as at the beginning of illness and now ten years on?
  • Why do the HSE ask of me 'what do they mean, 'ongoing?'
  • Is this not self explanatory?
  • Why has the HSE never found me a Hydro-pool for therapy recommended by many Irish and UK consultants that I avail of hydrotherapy, ongoing to maintain my body - again ten years waiting.
  • Why has the Irish state never really bothered about getting me a diagnosis for the complex condition I am suffering from which at present is unknown to my sister and myself?
  • How many can go through life knowing they are declining without a disease name, even if no cure?
  • Why has the Irish consultant base never  followed the recommendations that our disease process was most likely a primary muscle disease and further tests need to be done - (2016 and still not instigated).
  • Why have I been left to die alone with no real considerations on my care.
  • Why has the HSE not provided a key worker, better social care support and why do I struggle so badly even with the basic tasks of daily living?
  • Why can an important investigation be found in our favour and upheld and the HSE successfully drag this out for well over three years, with a lot of denigration, accusation, slur and no real meat or substance presented on the table.
Can I please beg for the help I need in 2019?
Will doing so deliver more bad practises and denigration?
The needs, the care, the diagnosis and the maintenance therapies, are NOT overly weighty.
They require planning and operational management.
This is not a complex case - in deed its incredibly standard.

I remind the HSE I am not bed-ridden, I am not peg-fed, I am not needing extensive body management or handling.
I am very sick with a complex disease with many facets that do need oversight, but with a good manager, good will, ability to deliver and a good heart and sensible management skills, this can all be delivered swiftly and should not take ten years to sort, and allow to fester.

There are far too many GOOD individuals within the HSE so to me I cannot fathom this morass of a mess.

Sunday, January 13, 2019

HSE deny me access to information on my own files

It is very tough becoming ill.

It is even tougher losing the community you loved and served for decades.

It's grossly tough when you knew you had wonderful supporters in consultants and clinicians who gave their advice on what my housing needs were and what would suit me best when I was a very sick older woman with complex needs and difficulties and more and more using mobility aids.

The toughest about all of this is the fact I was rehoused but so badly I do need answers from the people I had trusted - who will never get my trust back in any shape or form.

I have been very shabbily treated.

Working in an Inter-Agency fashion, the County Council and the HSE were discussing my housing in depth for months.
Sometimes I was present as was my identical twin sister.

All references were given in by myself and some even directly sent by consultants, to the HSE and to the Council, good recommendations, accurate recommendations of my needs, my ways of living, how best I could be served and how I needed to be embedded in the community I loved and did so well in.

Questions have to be asked why major consultants professional opinions held no weight and I was shoved into a tiny backwater of prodominantly men who drank heavily and the HSE claim they never got to hear of it all!

I cannot believe this.

My question being, too,  after being shot at in this new enclave I have this to say:

  • Why did the Healthcare service leave a very sick person in a dangerous housing situation?
  • What did the HSE do with all the letters/reports/advice/ recommendations made to them and the council, because they are not on the  patient's community file.  Where are they?
  • Why are pages and pages and pages redacted from my view when I asked under FOI to receive community files.
  • Why did the HSE close the file leaving me stuck in an alcholic enclave of men, alone, afraid and terrorised.
  • How could they do it when it is mentioned at a team meeting I was physically and psychologically declining in the social housing unit?
  • How could they do this and leave a sick person to the mercy of the men and walk away in the other direction, knowing I had made two suicide attempts there?
  • Where is the file of the Director of Public Health on this case.   He was a Director of Public Health of the HSE and no file should be erased during the lifetime of the living patient.
  • Why do they refuse to speak of this time, allow me see the paperwork and claim files do not exist when one or two pages can be gleaned on the files I already have.
  • Why did one consultant who made recommendations who now works for the HSE redact her recommendations to the council from my files after I left as a patient between the time she gave in the recommendations and sometimes after I left her.   I was a patient of hers.  these files are legal documents and are not allowed be tampered with.  They are now not on file in recent FOI requests.
  • Files are legal documents, you are not allowed tamper with them.  Redactions of major recommendations for the rehousing of seriously ill patients, whom you advocate for a certain living arrangement to be missing off the hospital file is a serious offence in my eyes.
to Me, the HSE has many questions to answer.

I have suffered badly having such a health caring organisation doing any community work for me.
I have been left penniless, out of my county I yearn to return to, I have no means to make any decision, no means to attempt to get home.
the consultants all made sound judgements, but these get tossed to the winds.
This is our healthcare service.
this is the only one protecting those who are sick.
did I feel protected when they walked away after I was shot at and attempted suicide in a situation where I was way out of my depth and which was dangerously violent.