What's another Year? Post 2015

happy New Year - from ANN!

Happy New Year from Mags + Saffi!

Well, exactly...'what's another year?'  when this song won the Eurovision song contest i was in hospital for an entirely different reason, but said the same to myself then...'bloody hell, what IS another year'.

Fast forward to the age of 63 in Ireland, during austerity, commercialism, capitalism and lack of decency and any democracy that i can see or tell.
In the Ireland of utter abandonment by its government, by its public health care services.  We have the young ones, with intelligence and in despair leave these shores - yet again.
Over and over again Ireland exports most of its talent, generation after generation.

We fail to keep them here.
We fail our very own.

But for me personally, what can i say about 2015?
I can say it was a dreadful struggle.

Its been so bad that suicide has been thought more about than ever before and my life has taken on a cast of, sort of despair rather than any consideration for joy, living and purposeful engagement.
Most of the year was attempting in despair to get some care about my health demise and this takes every day of the year.
Unfortunately i found it impossible to move things forward, as did most people.
I am not the only one being abandoned.
the sick just are not being considered at all. And disappointingly, we are not considered by the family either.

it's important to remember, before being sick and disabled i had what is classified as - A LIFE - as an accomplished Artist.

 WENT TO A FABULOUS PLACE CALLED 'THE KIELDER TRUST' TWO HOURS NORTH OF NEWCASTLE.

they had cottages there for rental but in the main area they had a large cabin style building dedicated to the disabled.  The disabled, that was,  who were going into respite.  This was indeed the most fabulous respite care centre i have ever seen in my entire life.  Not to mention, its 'HOLIDAY'  more than respite in a beautiful area about two miles from Newcastle.
the young people who worked there were truly dedicated and terrific.  During the day nothing was too much for them.
the food too was top class.
the sick and the dying and the disabled were cared for VERY WELL, they were in 'respite' but really on holiday.  At night they opened a real 'Bar' so the sick could drink, real drink and have wheelchair races drunk and disorderly, style.
here now really, respite is considered three weeks in a bed, a hard one, with strict regimes of very little other than the bed away from home, be it at an end of life centre or rehab centre,but it ain't no adventure sports respite centre.
Here in Ireland these places are run by nurses, health and safety is Paramount, hardly the patient counts at all, its boot camp style and orderly.   This place was run by skilled healthy young people all ready and at the ready to please, chat, take photos, get wet (!) and do a lot of hard work.

zip wiring on a warm end of summer day was done by all, my twin and self included.
the mentally ill zipped, the damaged from surgery zipped, those who had cerebral palsy zipped and so too did many with terminal illness and paralysis.  The place was geared to make sure all had experience if they chose to, amazingly we all chose to.

When coming back to Newcastle and you tell the neurologist, she would mutter 'mother of god, not on your life!'
But life is so SHORT.

ZIPPING DOWN A WIRE IN PINK FLUFFY SLIPPERS DID NO DAMAGE TO ME AT ALL....

A VERY SHORT WALK IN THE GARDEN IN SHOES PROVIDED FOR FOOT DEFORMITY RIPPED MY TOENAIL OFF!

Well i enjoyed zipping so that is a big + and my next trick is abseiling down Dalkey Quarry cliff face, if we can work a way of getting to the top first!

EVEN THE TWIN, ZIPPED ON THAT WONDERFUL DAY.

Health again (but then i am consumed by health issues), i have managed to get a large organization of the IMP International Mitochondrial Patient group to come to Ireland at the end of 2016 to give a conference.  This now has to start in earnest, that is the preps for it have to start in earnest.
it is a coup for me and a really good thing for those who have mito disease in Ireland, for the families, the children and of course the many adults who are missed out now in the age of YOUTH.

But the distinction on youth v. aged is for another blog.

i also won a scholarship to Netherlands for a mito conference, that too is a coup, it will be for me a regular junket out of misery and a learning and networking experience.  I won through writing an inspirational piece, now that is so cool!
i intend to learn ALOT from it to bring back to Ireland, both on how to organise a conference and how to be a diplomat!

so it will be very skills based.

I do not think there were many pluses.
I had a holiday
I lived in despair
but also learnt a lot and will have a junket and learn more.
AND, my arch by the shed was resurrected by Darragh Stokes and John Bloomer  just before Christmas when storm Clodagh (it would be a girl) blew it down and nearly killed it altogether, well the wrens nest is gone, but the arch is up again and maybe the wren can do a bit of lateral thinking when it discovers its place of preference has been napped by the winds.

i will see a second European country for only the second time in my life.
all because of health issues, as was the first time out to Finland.
i hope to make some lasting friendships, as i had in Finland.

IN IRELAND THEY SAY 'HANDS-ON' PHYSIO IS NOT SUITABLE FOR MY BODY...IN FINLAND, THIS FINAL YEAR PHYSIO STUDENT HAD TO TAKE ME FROM THE CONFERENCE TO WORK FOR ABOUT AN HOUR ON MY BACK WHICH HAD GONE INTO SPASM - IT WAS TERRIFIC, AND I ENDED PAIN-FREE.

so i guess i have to show the start of the new year as the happy clappie plus addict that all want me to be.
well, how long will it last?
That depends on all manner of things, primarily on the provision of proper health care in Ireland.
 That is a huge battle for all of us sick here.

SPOT THE DIFFERENCE - HEALTH CARE IN FINLAND OFFERS A PROPER SOPHISTICATED WHEELCHAIR FOR THE SAME DISEASE, IRELAND MAKES YOU 'WALK THAT HORRIBLE WALK OF EXHAUSTION, PUSHING A CHAIR YOU CANNOT MANUALLY USE IF SEATED IN IT!

WHEN I SAY 2015 PRODUCED NO HEALTH CARE HERE, I MEAN, NONE, THIS FOOT HAS BEEN UNSUPPORTED, UNTREATED FOR ALMOST A DECADE IN IRELAND IT BELONGS TO MY TWIN SISTER.  IRISH HEALTH CARE WHERE ARE YOU?

I WANT YOU TO LOOK AT THIS VERY CAREFULLY - THIS IS MY TWIN SISTER SPEAKING IN BRUSSELS - SHE IS AT THE TOP OF HER CAREER HERE.  TELL ME, WHY SHOULD IRELAND, ITS HEALTH CARE NOW TREAT HER SO BADLY SHE IS WALKING ON THE SIDE OF HER FOOT AND HAS NO SUITABLE WHEELCHAIR?

i am damned if i do and damned if i don't....talk about it, for sure as eggs is eggs, we are going no where fast in improvement.  The care system is dangerous and becoming lethal and terminal rather than a functional healthy care system that cares.
To be honest, i believe it's classed as the worst in Europe, therefore i don't think it can go down the tubes any further.

DOUBLING UP - FOR FAN BENEFITS!

I just wish the sick can get cared elsewhere, anywhere but here because you worry as i do.
We have the Cross border Care initiative, i hope those who read my blogs and are concerned, will view this directive, its useful but they are failing us by not telling us about it all.  i have discovered it.

well now i am at the end of this blog so i better clap for the happy moments.
clap for those shites who do not want to talk on health care and advocacy for better health care
and clap for those bought over the fence who are in health care and wouldn't dare speak out because they are paid by the system.
And also clap for the one who doggedly try for their own kindred who are disabled and take on that responsibility of actually caring, now this is worth the clap for the end of this blog.
i know two women by name who are dealing with the trauma of health care issues so that makes four i know by name which includes that of my twin sister and myself.
I know groups sent up for those also fighting a battle they feel they are losing fast.
I know too many groups of people fighting a battle they feel they are losing.
I have heard gut wrenching agony stories i know to be true, they couldn't possibly be lies, they visually are so 'in your face' you gasp wondering if its possible, but in Ireland it IS possible.

I want to clap for those who will fight hard and faster, namely the universities, Flac, NUI Galway Centre for Law and Disability, Limerick OT Rosie Gowran and her fight for the acquirement of wheelchairs suitable for the disability that people actually have as well,  and others, all capable of fighting but you hear little from them, who may put people first before profit and do some good.

We need more doctors who will put themselves on the line, as did Prof. Crown in 2013 and also Prof. Orla Hardiman about the only present doctor in Ireland who will give out hell about the services.
The rest are sitting back saying nothing.

Is this weak or is this powerful?
Is it that they have too because of been bought off and bought out?
The same ones who will not offer care in the public service as they too have been told to cut back due to expensive public systems, but they get paid enormous wages in the private sector so Ireland is a two tier system.
The doctors do this now as a business,  they work to earn as much as they can any way they can and if that's for the private posh then they will push for that.
If it is for the poor they not only give hell to us they treat us badly, i do know on this one.
They also refuse care, i believe more often than not they do this.  I feel i know this one too.

so clap clap clap for the plus in life.
and my mathematics is not answering the call that one is better than the minus in life.

i just hope 2016 will be better and less hard.

SO YES WE SAY -
HAPPY NEW YEAR TO A HAPPY
2016 - FOR ALL - EQUALLY - EVEN DOGS!

AH SPEAKING OF DOGS......C'MON NOW GAL..............