Monday, December 28, 2015

In this blighted house: 'Your allocated 'role' as a Disabled/ill person in...

In this blighted house: 'Your allocated 'role' as a Disabled/ill person in...: I have a progressive, rare neuro-muscular disease . I can walk with great difficulty but largely need a wheelchair. I find breathing, walk...

a blog written by my twin sister, and so good i am sharing here.

Saturday, December 26, 2015

the night terror continues but what will new year bring

in reality for most, days run after each other and all the thoughts and the pain continue, i do not think anyone is able to switch that lightbulb in the head.
the lightbulb goes out permanently when there is death or an end to a crisis, a situation or a trauma.

for me the lightbulb remains, but mostly comes to hit at night and in the silent hours of the day.
its there for a few reasons but mainly for one alone, which hits the neurons like none other.

the HSE.
it has caused me such agonising grief and pain like none other.
with a kindly, very kindly conversation with a member of the HSE who rang to wish me well over christmas, he stated that others see the situation differently to myself.
Of course they do!
they ARE the HSE and they are that for nothing.

they know why they see the situation differently, becuase the warped thinking within such a mafiosi organisation says that there is one thing only for them, as opposed to the sick, is, their organisation's integrity must be held intact against even the fleas that hop.

but the strange thing about all this is
1.  the healthcare services was formed to help the sick and vulnerable.
2.  every person in Ireland can see through the 'group think' of the HSE, and really understands what the HSe really is all about, and this i am sure the HSE know, unless of course they are really not listening at all to anyone.  Everyone is aware what the HSE is about - protecting themselves like no other organisation in the state.

We also know health care is not about health but budget.

the reason its about budget is because the HSE and those who were bought in about two years to put management onto a more professional standing still cannot get the HSE to budget well.  At all.

for instance.
problem solving.

problems are solved when they are faced square on.
it saves time to do this.
it saves everyone grief from all angles.
it saves time during the processes of letter writing, phone calls, emails, stamps, office time and group discussions.
it doesnt make economic sense to be answering letters and emails for over five years and do nothing at all.
it absolutely doesnt make sense to be answering the government of the day or representatives, almost on a daily basis about the pain of another and making excuses for why it is occurring.
to bash and bully sick people, is perverse.

it literally is very perverse.
the reason why the HSE was formed was to help the sick and the vulnerable.

why do i not sleep anymore - i feel tortured.
why - HSE are doing this to me.
why is there no let up, simply because the HSE have not done a damn thing to sort a mess of their creation.
alas, they have a situation where they join up arm in arm like the rugby line up during the National anthem, the gig a bit, they shuffle but all along the way they link like a chain in the dynamic all known to well in group participatory sports of a high calibre.
they have 'group think' down to a fine art, and the responses.

when this kindly gentleman rings me and says he is sorry he has been unable to move things on a bit faster for us, i thank him but know to batter against the same individuals, is like flogging a dead horse.

and we have more waste of money.

but what will the new year bring for me.
i am unsure.
when the district nurse txts me and says 'i hope 2016 will be a happier one.'
she knows how terrible i feel.

she also knows where i stand in the pecking order of family and the level of isolation i feel within this area and within the family and county.

i feel very much like as if i am on robin island.
i am very alone.

christmas has been and it is obvious where i stand.
again as twins receiving one slim book from one relative to share with twin sister by way of my christmas present which is also a book that is self published is mean and unfair as we are two different adults.
we cannot get them to think that twinship is not a blood, body bind, it is individuals who were born like this by mistake and chose their own path and ways and are in fact very different.
needing yes, the same love because we are also compared as in 'virtue compared'  which is sick and perverse too.
but then to have people not care enough to buy a present for us as individuals, and to clump two relatives together to get one item for a twin is unfair.

it shows, where love stands i am afraid.
Love is shown by deciding to show it.
to decide to save money by lumping together two individuals into one for expediency is wrong and we see this as lack of love for the individual.
and mean.
they have at least as much to give as two pensioners with high overhead expenses on a very fixed budget and which will never rise at all.

so will 2016  see a change.
someone on facebook put up a saying, you cannot change another but you can change yourself.

i intend to.
for too long i have been bashed and my confidence shattered, intensionally by state and family.
the only way up out of this is by me, bringing myself in to a place i know i have been before.
i have been happy, cofident and proud of what i have done in adversity.

to revel in this pride can only be achieved by piling on achievement after achievement.
this i intend to do.

of the HSE well i will never give up my stance, that there, i hold myself not to blame in any shape or form to what has happened here.
too many confirm for me that this is the case, and i have known from others too who struggle in the same fashion as i do and who are being punished in very much the same way.

regarding family, well they were always like this and that will never change.
Love is for someone else to offer another.
if it has never been there it can not be given so what do you do.
you do alot of loving, if that isnt good enough the love not returned, then i am afraid the colours going out are rainbow and the colours coming back in return are shades of grey.

but then that is showing their true colours.

my wish for myself is to bump up the confidence i have lost over the years.
put my life back on track but never let it be forgotten what has happened me ever and this i plan to continue to do, i will never let it be forgotten on the platform of policy the HSE is a dying breed and they like love can change this, but i will see what the new year brings, they have this choice.

even if they loathe me, to deny care is evil.  positively evil.

Sunday, December 13, 2015

the abuse-neglect behind the stats for those living with a disability in Ireland todayfo

The article in today’s Irish Times by Dr. Clonan sent people into their own personal painful stories of experiences.

I honestly didnt think it was as bad as it is, and yet it appears that it is so.

Many now indicate that the situation is dire, appealing to members of the Dail from all corners of Ireland for their childrens’ needs fall on deaf ears.

It does seem it is but the tip of the iceberg, raging waters of poverty of equipment and services and appliances for all four counties screams from the pages of disability groups and especially the mothers and fathers who are asked to cope against all the odds.

In disbelief of one persons story i asked another who had multiple disabled children, ‘can it really be this bad?’
Confirmation came through her own story.

So the economy is on the rise, the country is seemingly getting back on its feet, people are baying for the extra pennies that were lopped off wages within both public sector and private sector and yet not one disablity group seems to have crawled from the mire of austerity in any shape or form and it doesnt look, indeed as if disabled children ad adults,  life style chances of enhancement is coming soon, if ever.

In one family alone an older child’s powered wheelchair has cost a single mother over 3,000k and the second child coming after is squeezed into an already far too small chair as it is.

Both children have life limiting conditions.
The house is set out like a mini hospital and there is constant lock-down in health crisis, one after the other.

Splints, shoes, tubing, dressings, medicines etc all have to be juggled  alongside the the far larger bills for the wheelchairs and orthotics and shoes and apparatus baying for the limited funds within that household.

Hospital runs, appointments and emergencies are all occurring, sleepless nights, baby sitters to cover staying with one while the mother is in the hospital with the other.

In another case four children are disabled.
Again the same seems to be the case, a 4,500k wheelchair for a child is needed.  Mothers are going to companies who make up from bits and pieces of chairs a half decent one for the child or go to a second hand internet forum to find something similar and do payments in small chunks.

The days seem endless, mothers online for this and that.  The exhaustion much be profound.
The HSE promising to pay back when parents get a chair but this never happens of course.
The despair is reeking through these stories, but who really cares?
Fund raisers and fund raising are the order of the day but many families find ‘what another fund raiser, what for NOW?’ people are asking.
Its endless.

The fund raisers are driving the cash strapped public weary and bleary and the good samaritan is exhausted with the clang from the clash of coins in the next begging needy disabled family or group or for the family group.

Where can all this end?

Adults too find it very tough indeed.
Over 60% of those getting wheelchairs from the HSE services are dissatisfied with the ones they have received, and are seen and felt not fit for the disability they personally have.  (Dr. Gowran)

The idea that the wheelchair is more a luxury than a prosthesis is par for the course.

Even to the eyes of those working within the HSE, if a person stands up, all eyes are agog ‘i thought he/she was disabled’  but most know that there are so many variables that most using wheelchairs are actually able to use their legs, but with such limitations to make it impossible or too painful or tiring.

Not only do we have those with disabilities living below the poverty line we have parents trying to fund the care and needs of growing children and dependent adults also living in poverty as well.

When the Hse runs a second hand ‘outfit’ for second hand wheelchairs, its a disaster.
Wheels fly off and a sick person goes into a wall.  (this commentator’s).
Wheelchairs slither into the muck on the side of a slight gradient, and the user told ‘ah sure they were never made for wet paving. (this commentator’s), yet this time the commentator was told it was because the bar at the back had not locked into place, but as it happened again, i looked at it and sure enough it was in correct position.  Systems failure in other words, or dodgy indoor powered wheelchair never meant for paths going south as in gradient.

Fact being, wheelchairs now-a-days are slithering and slithering off course into a divet to the side could have been fatal.

I heard of one case of a person going into a river in a wheelchair.

So how on earth can we be very chuffed to be pulling away from austerity and getting back into the black.
Who is?
Where is it reflected that Ireland is in recovery?
Is it?

I do not see it.
The mothers and fathers of disabled children do not see it.
And adults with disabilities are still not getting well paid jobs, if jobs at all and the poverty of disease, weighs heavily on top of the poverty of services.

We are in crisis – the disability movements are in crisis and so too are those with disabilities.  We need to see major changes and shifts of emphasis.
Most people caring for sick and disabled children, if given a break and some leaway can offer more in spades.
Most adults with a disability as well, given the chances, the transport etc offer just as good a career path as abled bodied persons, but employers it seems, think maybe they are more of a liability.
Tosh i say.

The only liability is lack of change, empowerment, rights and equality.
I am enraged to hear the stories that i have placed here in this article from only three families i already know about.

The tip of the iceberg

Wednesday, December 2, 2015

thank you! hit the 20,000+ mark and another link to another blog

hello everyone.
just to send out a heartfelt 'thank you' for reading my blogs, in the short space of time i have been doing this, i have reached over 20,000 and i am so happy about that.

now here is another fantastic read and its that of my identical twin sister.
you will see a theme running through both, and i think together the team is strong.

we will never give up and will fight the injustice throughout society for those of us now labelled and having to live with disability.

here is her link well i hope it is, tell me you get it ok.
bye for the moment, the dogs are needing their dinner!