suffering and trauma continues unabated

The launch of "Living well in Wicklow" 2013 by
TD Mr Simon Harris, now our Minister for Health.  Getting him to discuss health with his nice neighbours the twins is impossible.
That is my twin sister, now a shadow of her former self but eager beaver once to make a difference in our new county where the minister for health hails from. 
it is stormy here.

there is nothing 'normal' about my life anymore. 

'she has an expressive smile'
(so said a cynic of a consultant)
me as the flower girl!  i do smile, it's a nice one, its the body that is fucked doctor

i do not speak about having a disability or being a very ill person or being a rare diseases patient in a small country.

i am talking about the impossible task of living a normal life or even remotely akin to normal as i struggle against the odds to get what we call the recognised 'fundamental rights' which we uphold here, as europeans.

i struggle to get the acknowledged pathways of care for 'chronic diseases', (yes, we have a plan in Ireland for that), neurological care and pathways (yes, we have a plan for that too here) and 'Rare diseases plan'  (Yes, this was launched by the then minister for Health Dr. Leo Vladakar), who is now our Taoiseach, head of government and country parliment.

My local TD and representative of the citizens of this town and county is a neighbour, is the Minister for Health, i voted for him.

the Department of Health which he is head of claims that the Department of Health has nothing to do with heath and i am to contact the Health Service Exec.

believe me i find this strange - the World Health Organisation claims that the Healthcare system in Ireland is run by the Department of Health, and if you look at some of our wonderful graphs and pictograms, there is a pyramid of tiers of importants and structure within our healthcare system.  Who is at the top, like the star on the top of the spikey christmas tree?  The Minister for Health, of the Department of Health who claim to me a citizen, they have nothing to do with Health.

that to me is very spikey.

an update will find that i now am seriously ill, with a progressive neurodegenerative disease which is progressive and includes myopathy, complex autoimmune diseases, dystonia/parkinsonism and severe deafness with congenital rubella syndrome (not considered to be the cause of the rest of my medical mess of a body of mine.

i have had this now a long time, and the fight began then, it continues and very little achieved.

lets look at where we are at.
there were needs to be fulfilled by the healthcare system as top of the clinical medical teams are consultant medical doctors. 
we do not have any centres of excellence for any known group of diseases, in ireland.  we have none that fit the criteria set by the European networks for centres of excellence.

we have no real expertise in anything but we do have some excellent doctors here, just lack a cohesive plan of expertise for multidisciplinary care for very specific and difficult conditions.

but when we are sent out of the country to centres of excellence, where actually you can get no better opinions, reviews and medical advice, sent out for the advice, the reviews and considerations, what comes back to the country is ignored.

why send us you may ask if it is ignored.
i ask.
i wont find answers.
i will get one from a CEO "did you realise that the Irish doctors have a different take on how to care for you to the UK doctors?"

Yes, i reply i do its called "go home and die!'

i have rights to medical care under the european plan for care and i have rights to use even centres of excellences throughout the union.
but i am not being allowed use the unions policy on cross border care and use expertise when i need it badly.

the Irish state will not implement what is recommended by those who know far more than we ever will, and i will be dead before we ever have one place, hospital, unit, discipline that will be declared 'a centre of excellence' matching 'european standards to meet that criteria and designation.

with 17 separate conditions, and this is not with the neurological decline included i receive the following:

no therapies whatsoever.
hydrotherapy was first requested in 2005 - still not being offered.
neurophysiotheraphy assessment - never had it, recommended in 2015, isnt it time i had this after all this time being so sick with a progressive disease?
is it not time to do an assessment of need for this do you think?
can we vote on that?

a guided neuro-therapy programme taking into consideration the co-morbid conditions, (the consultant means here, that i tire very easily and have a metabolic disfunction that can be evaluated on a test we do not perform in Ireland at all, no one even knows what the name of the test means, and that is our consultants).

to be honest a therapy of maintenance would be better than nothing, nothing isnt therapy, and my body knows this and feels it.

i receive no real medical care, its sort of pitch in the dark and statements such as 'it is probably...'  but "Probably" is not a diagnostic term, its a vague sort of 'well, it could be or it could not be or it could be related to or it could not be.'
Do you get my drift?
it drifts onwards out to the horizon and the world is not round but flat.

chest pains in ireland doesn't look like the ambulance programmes you see on the telly in the country nearest us.
it doesnt mean you are air lifted, whizzed off to be in any intensive care or coronary heart department and instantly attended to as in life and death situation.

what happens is, you can die here because the nearest ambulance is 80miles away.
you can be put in a corridor next to - wait for it - 'the chest pain assessment unit' on a night there is no consultant on duty of any description whether it be nephrology, neurology or cardiology. nada.
he could be at the yacht club and if there is a prob.  the registrar will ring.

nope doesnt happen.
what happens, you are put in a corridor, you are not labelled as a human being with a name and left.
i was waiting for two hours before i asked a young rushed doctor when i will be seen by a doctor, 'who are you?' he asks.

good question.
a tough one too if the person who i am becames a cadavar in the state of post pasting to the next world and end in the morgue with no id, they are going to have a field day finding out who the hell was that lady on that trolley in the corridor about three rooms down to the left, right again and then left and behind a door and in front of a man and behind an old lady and opposite a sick young lady with her partner and next to the station with three nurses at it looking at screens but blocked by a wall with no window to see that the lady has had cardiac arrest and no one sees it happening and no buzz words or sounds marks the alarm that a dead is impending will all drop everything and bring the electric pads just in case to blast the chest of her before she is a nameless blob in the morgue.
we cannot afford to lose staff in detection work.
what does this patient do?
i walk, still with the chest pains.

and it takes me a further hour and a half to get out of the hospital.
i walk from A'e pass what is a war zone of bodies absolutely everywhere, no consultant but many very young registrars or even students drafted in to fill gaps in the missing expertise, of which we have little here.
i walk with my blankie, they are now not providing pillows and blankies so i come prepared to my hospitals with a blankie at least.
i walk and no one batts an eye lid, i just walk past the war, and i move into the next, thats the war zone ready to implode in the waiting room which is filled to the gills again of the sick and ill and battered and cut and split and bleeding.
out the door i go, walk around the building in the dark and try find a phone to get a taxi.

this is a woman who has a muscle wasting disease, no wheelchair (ambulances here wont take your wheelchair into the hospital with you), two sticks and a blankie walking the dark alleyways of an Irish hospital seeking the escape route plan.

gp's saying 'did they not hook you up to a moniter?' mystified, but in reality we all know our A'E's which now are called ED as if we are one of the more sophisticated kinds.

we are crashing the parties of the real ED's as seen on telly calling ours that is a stretch too far.

so i am still here, still no medical care, still cannot get out to centres of excellence, still cannot fecking move for care.

still no bed.
still no wheelchair review to make it more comfy for my battle riddled back in a bucket, sophisticated yes, but not person centred as it stands.
no therapies which were recommended in 2005, 2009, 2010, 13, 14, 15, 16 and 18 i kid you not, ongoing physiotherapy is met with:
"what do they mean by 'ongoing?"
that is our HSE exec, and professional asking me the lingo definitions here.
well i ask my facebook page and get versions from the US of A and the UK and further afield and the Oxford dictionary is at everyones disposal and so too is any google app as anything from toenails to nails to bad teeth and coronary heart disease is now cured through google mostly in ireland, for you cant get the real mccoy here.
i use it all the time to bring me knowledge cos i cannot get it in a human being here.

so progress is in my self invented eye-medicine, that is i-medicine, in wiki style.
i am hating all this.

its taking its toll on my health and sanity and terrifies the flipping life out of me.
meanwhile i am taking the odd photograph which are turning out well indeed.

but apart from that, life isnt living, its barely existing and arguing with the HSE is not a past time, a hobby or an education, its a disease and a profession at this stage.

thats progress report.