A very HSE day

it was a difficult day.

I was SO tired as the HSE official and a Council official plus twin, plus disab advocate and surveyor stood in my new home yesterday to discuss the merits of the rebuild aka adaptation grant.

Why oh why does a man have to stand over you when you so tired you cannot even be as tall as him (them) and say such things as 'why did you not have a project manager?'
'Why did you get such a door?'

of the first - no money, does it occur to anyone at all, in 60yrs of life, i hardly ever worked and when you are ill and get a grant (i asked for a bit extra for just that, a project manager)! and when you are ill and have not been a brickie nor a glazier nor an architect nor a builder, how on earth do i know anything about patio doors?

I do know aesthetically what i would wish for, but thats about it.

so that part of the day was fraught, leading to knackerland.
After that fraught day i proceeded that eve to wallpaper the back wall of the bedroom, change the colour throws on the bed and sofa to try, attempt squeeze some juice of enthusiasm from some place.
result, even more knackered and so to bed, 1am.

the day also started badly.
no bread for my lovely spanish lady which upset me cos i was too tired yesterday to go to bank and go get money.
no money in the tank for petrol which meant a diversion on the way to town at first possible chance to get a post office open.
i had to aim for that as i then would have been too late for the dentist.
this took me back to where i had come before i hit G.....
and once on the sniff of familiarity i burst into tears and that finished off today too!
Again the angst set in against one body of our care service, the HSE.
the very HSE who effectively destroyed my life as i know it, in the only way the HSE know how to do this.
I believe they do it with such finesse and with such flourish that it had to be honed to perfection in other peoples' lives before i was so unfortunate to meet the HSE!

You meet the HSE through Health.
usually BAD health, they come on board in a sort of invasive way.  You are referred to the HSE and when very sick they refer you to  many in the HSE, in fact the Health Service IS the HSE!

and soon you are consumed and denied even a life due to the HSE and being flooded, so that you bloody drown and are effectively taken over.

My life ended when the very first HSE person entered my life in my own home.
she walked into my life and walked out, leaving a trail of devastation.
this included managing to pursuade me to move out of an apartment and area i utterly adored.
At first i told her 'no way, i was leaving in a box'
after that she 'worked on me.'

so much so i left.
not only there but the whole county. Why did i leave the county?  i was allocated a dangerous small social housing unit that wasnt first inspected by the HSE as to its suitability and in the end i had children shoot at me and alcoholic men jump walls to attack me when the council spray painted out the parking bays of men who had lived in this area for over 14yrs, for a tosh that is me... as this bay was needed for a person with a disability who has a van that is adapted.
and there were messages to the HSE.
many!
and they all advised the famous HSE about how i dealt with change, (badly.)
how i needed certain things, (i did).
and all these messages were from consultants.
and all to a letter were either ignored, or at worst lost in the paperwork of HSE which has gone out of control, pretty much like the HSe.
at team meetings which were held in urgency when it went pear shaped found even the social worker not penning the fact that someone far more superior in status and experience was actually present in the room!  That person being my twin sister!  A social worker trainer in another country and with a doctorate, she was sitting there at his side and not even noted as present on that day at that team meeting.  That, my friends is as bad as it gets.

the day that Reilly says in the Dail that the HSE is gone, will be the day i will crack champagne over the heads of those who destroyed my life

it will be as jubilant as the George of Cambridge.
just as.
the dynasty has ended.
the dictatorship has been broken.
the king has lost his head and humpty dumpty will never be put together again.

thats the day i hope will come in my lifetime.

Also i shall digress for a minute, but not long.

I also want to see the day that disabled people stand up and be counted.
because i believe they are crushed and squashed like i was and have been.
One thing i will not do, is name it.
the abuse of the sick.
and I name it in and within the HSE.

I also want everyone who has to struggle ill health, struggle disability and struggle disadvantage, to not grovel for needs to be met, but to stand tall with dignity and face full frontal all who want to put you down and crush rather than lift up.
Anyone who denies another freedom to enjoy the life they were and are entitled to shall be named, in full.
there are so many within this organisation who stood by and let what happened me happen. i have to say as a collective entity they are equal in their efforts to not uphold the values which is in the job descriptions they hold.
the denial of their duty reeks through the pages of documents and how they manage to lift the phone and get the votes of colleagues so their backs and fronts are covered and so its an infected collective disease.
the HSE.

If the HSE feel and believe that i have gone away they are very much mistaken.
the pink bowler howler rules ok.
and for sure.
the pink bowler will not be hung up like old rugby boots until i can say i have been vindicated.
the day that justice is done for one individual who cruelly met up with the HSe and was put down by the HSE will be the day, a beginning of a routing of a sort.
the beginning of one individual who has enabled others to start their own personal battles for their needs to be met.
not grovelling.
not being shoved into the spot of 'Its all your fault!'
this is a factor of dynamic the HSE are particularly good at.
turning things askew.
but the wheels are turning.
and i believe i have it beneath the bowler hat, pink in colour, supported with the other pink bowler to say to the HSE - This is one individual you cannot mess around with.

I do have supporters.
there are still many who see me as kind, though fragile.
kind and gentle though at times too vocal, as in vocalizing distress.
kind and giving, and i do this, i believe in spades.
i am also creative, practical and inventive.
you learn that by being poverty stricken and never leaving that zone either.

one day it will be the part of who i am that is fully appreciated.
but will only be so once the HSE departs from their format of 'slash and burn' tactics.
because the HSE is so powerful it does destroy, and has destroyed.
look to the annuals of how they treat those of the children of this state who have been unfortunate enough to be cared for the state.
what happened, many are now - DEAD before they have reached the age of 21yrs old.

and that is directly due to lack of professionalism, of - THE HSE.

time is not on my side for diplomacy.
there is no sweet talking from me, because we have not the decade left to sort stuff and things are slow enough to get done in this country.
I have gone directly to the jugular here.
i have had to because, time my friends.

who it be any better anyway if i stated in a sealed and closed letter "to whom it concerned, I am writing to the HSE to kindly request that they be kind to me."
i doubt that would work.
WE ARE kind is their answer and so be it.
their unkindness has to be dealt with in this format.
the unkind way.
for now.
Do i know the HSE read this.
i guess some do peek in.
i guess they do.

To this very day i see and remember the first day the HSE knocked on my door, for the first time.
I don't wish to remember it.

lost but found and lost again

hi everyone,
sorry for not posting as frequently as i should.
the health has taken a dive.

shall i start with the good news then?  ah why not!
it is in short supply so the blog will not really contain much more, except at the end something might happen, you never can tell....but it might.


I have been granted permission by the HSE overseas treatment fund to get over to Queens Square for review, assessment and consideration.
this is GREAT news actually!
it is MEANT to prepare a care plan for my return.

Have i heard these words before - answer, yes.
but i am very hopeful that this will produce this as its coming from the top brass in UK and possibly europe.

we have to remain forever positive.

On the downside the slide is downwards, i am afraid.
the HSE continue the harrasment over returning the bucket chair, the powered wheelchair.
no one seems to be that ignited to fight for me but i am fighting.
I have indeed contacted ah Brian Crowley MEP, and by the end of this email should remember his first name, forgive me for forgetting but i do a lot of that these days, its easy really when your brain is effectively witless tired and jaded. (its been slotted in now remembered)!

I am waiting for physio, thats like butterflies, the one day wonders that come about when well, when butterflies decide to fly for the one day some day if not at all day, but no not for six months, but now we (twin and i are on the list)
I am also on the list for psychological input, not to sort my head at all but to make sure it stays on the shoulders and to try repair the confidence plummet after moving to this land of - well i thought peace and tranquillity for ever and ever amen and more.

that hasnt happened.
the care in this county for older people is non existant.
but as my staying guest/student who is going to fund the stay, 'there are a lot of babies in G...'
indeed there are...nice and rounded, fat pink and healthy.
so why are the babies then clogging up all the nurses time and attention at these weigh in clinics and advice clinics.
you see them enter in the expensive prams and looking good.
so why cant parenting be as primeval as it was intended, natural.  Most parents are good parents.
i am not denying the fact that vulnerable groups need to be watched and cared for.
not at all.
i dont think its either cost effective or fair to just have every baby in the county turn up at an alarming frequency.
and for each baby there is a triplicate report, thats obligatory.
the nurses are jaded and weary.
the elderly in the county, the disabled and other many vulnerable groups are missing out from the community care now practically consumed by babies
its not that equal in my opinion and having babies is sort of natural.  Mothers are good to them, in the main.
but a lonely 88yr old crashing to the floor and having a bloodied head which needs attending, needs the input from a district nurse, she needs watching.
oh same woman is angry that she is being told all about what she can avail of, you know home help and stuff.  she doesnt want it.
i know why.
it can be goddam invasive,  many cannot cope.
i have to cos i badly need it, but no i find it hard to cope with this.
hence the waiting list for the psych help, not psychiatry no, just someone to ease the burden of stress over coming here.
where the babies are.
what else have i not got and what list do i remain on.
well the emg never happened and am on the list for that.
the heart 24hr monitor never happened so waiting for that.
achilles attention never happened so continue to be in awful pain but waiting for an ultrasound and a dye thing xray for a hand that has now developed a trigger finger.
i am badly needing summer shoes and the denial and withdrawal of that funding means i am wearing clapped out orthotic shoes for deformed feet which saw me too hit the deck and gain a sprained ankle, its the same ankle as the busted achilles so now extra pain and no one cares a sh...how i attempt to walk.
i dont see health professionals except to give me a jab for the cytamin injection which is usually awfully painful for some reason.
i never had a painful injection before and the gp refuses to do it to ease my pain.

i have a lovely spanish lady staying with me as part of a three week stay educational like and she is a leader making sure the 15yr olds do nothing silly and move without supervision..they are testing her nightly...i think so far she has contained them to the rules, ok.

lovely girl i have to say.
its been fine but i have to learn now to have someone in my new home, its kinda financially testing to keep going on the disab pension and i manage just about so extra has to come.

is there any final good news eh?
well we are putting in to the equality tribunal a report to support our/my claim under the equal status act against the HSE.
i believe i am right in doing this.
it can however be a test case to see if ireland can deliver justice... we have to see on that.
Dr. Margaret raging Wheels has been working flat out on the documents.
she of EU fame and training social worker fame and saving lives of those who were abused by clergy.
she rang me this morning when reviewing some of the details "god ann this is awful stuff!'
need i say more.
oh oh good news i forgot.

well we went to the Moxie studios to look at photo books i enjoyed it and believe my twin did too, but next day i had the weeps and bawling yawling on the swinger collapsed in utter exhaustion.
still lying horizontal and shattered but there you are there you go.
still debating genetics and pain with people who i think find this subject rather baffling and confusing, comparisons been made on how children suffer worse than adults.
i do not buy this comparison at all.
children actually have a naievity that gets them by and love which can come in spades and hope because they have a 'magic thinking' mindset.
the adults however can feel drained, have an intellectual understanding that its never ending and they would be right,that they are left to fight for their needs usually alone and they have to live it like children do not.
rarely is a grown adult soothed other the rough patches. you sit it out or in my case lie it out.
the dyamics of communication defeats me most times, i find it difficult.
but for sure, it is worth it and it can start a debate that may end in a positive outcome, but i shall leave it once the name calling begins, because i am too tired to go down that route of whatever.
so so so so ah.
ann

super super moon from ireland

this was taken at around ten tonight outside my hall door, the super moon that prevented me from going to bed
great fun really great....glad i attempted this!
FEEDBACK now....am waiting......!

the little mitro defects

well yes i best tell my blog community that now we seem to have a problem!

its kind a macro one really but comes in the form of a mitro.

its called mitro disease.
we have it - evidently.

well, yes we DID know of course we KNEW but we spent at least 8 years trying to find out how to know.
where to go
who to see
how to get there
and how to know how to get there.

it was long

and took a detective not afraid of assassins at every corner with the logic of their guns :  you dont have parkinsons you just want it.
but why CANT you do five minutes on the exercise bike?
A learned movement disorder from a past trauma.
we have real patients here.
a touch of anxiety and wind
she too dangerous to have home helps in her house
i wont take you shouting at me - if aroused my voice peaks and i have so little hearing i find it hard to moderate downwards, 30% hearing would do this you know.

so the bullets came and still keep coming as they want to take my powered wheelchair away, oh yes the HSE are even prepared to go legal on this, i am told!

well i shall say to the HSE that you have given me grief since the day i entered one of your famed, infamous institutions and if i have bashed away the demons why cannot you?
why cannot you even open your eyes and educate yourselves and leave us little mitro defects alone.

now thats the gun from my side of the argument.
my identical twin and i now know what is wrong with us.
we are what are called mitro defects and have mitrochondrial disease.
i am pasting in a link to a youtube video worth watching.
it usually effects children but can and does effect adults.
we will need far more support than we are presently getting.
both our breathing now is implicated and we will need oxygen by night and sooner rather than later.
we both need the blasted wheelchairs and i need them without the warrant for their arrests

this little mitro had to work hard to find the cause of our malaise, and it was me because through me then twin could go to the UK Lupus centre where they had a muscle specialist and so we reach this point.
one little mitro defect detected and one waiting with baited breath to be investigated in Queens Square london.
we are identical twins with the same dna and same/similar presentations so it doesnt take rocket science to deduce that i have it, and the good professor said as much today in an email but he still needs to get to examine me and find out.
i could have hopped skipped the loop but i doubt it very much.  i feel very mitro defective indeed.

so here is the link and any hse official or doctor who peaks at my blog where the link is attached to all emails, please be kind, please be more understanding and most of all PLEASE HELP and not make our lives more difficult than they need to be.
the LINK:http://www.youtube.com/watch?v=tXJ4zK4sgT4

Cow Jumping has temporarily stopped

yes, i can say that right now the different type of cow jumping i am referring to is - i will not even attempt the cows right at this moment.

I am so tired the cows can do what they wish and i can be and seem to be as disabled as i feel.

tomorrow is a big day at the hospital.
i feel a 'meltdown' coming on.
the inaction.
years of it in Ireland for me.

I visited another hospital today and spoke with a neuropsychologist.
I referred to the treatment by the HSE as 'professional abuse.'
Simply and plainly -abuse.

Expressing my distress with tears and sorrow i asked why after years trying to transcend  certain other types of abuse, like clerical sexual abuse and dysfunction in my life i had to face this at 60.
i overcame drink, prescribed medication, hospitalizations, rape in hospital by other patients. clerical abuse when so so vulnerable.
also overdosing and cutting up.

i came a long way and am taking charge of what is left, its called Responsible Living.
I am staying active and trying to remain fit, given my disability.
i am making decisions about the future in case i do get worse.
i also am taking action right now to remain as well as i can.
but all is in vain when my Quality of Life is what is not so good.

there is little i can do to beg anymore for such things as the HSE to stop the phone calling about returning my wheelchair.
stop the HSe writing letters to me to say if i wasnt happy refer to the Ombudsman.
what i say to the HSE, i am not happy and they should refer to ME!
speak to me, normally.
speak to me as a human being.
treat me decently and see my achievements and not laugh behind closed doors and putting their personal professional phone on speaker so all else can hear.
I will state that i recounted this today to the psychologist.
he was appalled that a member of staff within the HSE put her phone on speaker into her office and where i heard her laughing and heard another voice, and i was addressing the issues of 'neurodegeneration' she was so disrespectful.
how on earth can you stop such behaviours?

One way for sure being that i will note it, and address it here.
i have to.
for if it happens me then it is happening others.
if we do not know about such things, it can never be stopped.
so alot of people may be suffering professional abuse right now across this country and all countries.

I want my life and i will reclaim it back from the HSE.
remember, HSE each of you is a person with both a body and a mind that needs caring for to stay well.
what would happen to you if you had to face this struggle, the illnesses, the disabilities and the hardship.
would you take kindly to others making it worse for you and your family?
you would not.

tomorrow i shall ask the doctor also why he feels it ok to abandon me to no treatment whatsoever bar pain relief and some immune deficiency aids as in some little poppers.

what about the wheelchairs, and requesting a decent one for a 60yr old?
what about having physiotherapy when its known to help dying muscles and bodies.
what about braces for feet, ankles and wrists when the muscles are wasting there.
and information about cheaper options for diet, medication and subsidies that are there but i know not.

i know my cows will not rest for long.
and i will have to receive that unexpected phone call from someone in ballyhaunis mayo asking,demanding for the wheelchair back.

and i know i wont stop fighting the hse for a better deal.

who saw the programme tonight about the mobility grant being stopped and how such a scheme helped Irish disabled.

what are you going to do about it?
i mean i now talk to the disabled confraternity in Ireland?
when you are not able to work for some reason or other, and not able to work when you are barred due to disability and how others are more able get the jobs, able in the sense of getting up in time and transport and stuff.  can you not work for the campaign for better treatment?

why not?
is it not worth it to be equal?
do you have to put up with such as i am right now?
will you let it happen, this i ask you?
I will not let the HSE rob me of my happiness, though they are succeeding quite nicely at the moment.

but also i have a twin with a disability and a family without.
i adore my twin and we are working hard on getting stuff right for ourselves.
when i look at the hardship of the people on the telly tonight and think of a relative whose only interest is horses and another mushrooms and who are fully paid up members of the upper middle classes and us twins struggle then i have to fight and fight hard.
my twin and i will reach our end happy in the knowledge that we did indeed fight the system, the family inaction and made good our end, with peace and love.
i too know that our attachment to each other, in the ways we chose to show it, is appreciated beyond measure.
and when there is one person loving you, you will  feel better.
who kissed the knee tonight then?

the challenges of a disabled 'cow jumper' in Ireland

i hope i have grabbed the attention now to read on, about cows or - rather about the jumpers.


the jumpers are not what the cows wear, nor are they in Africa.  (Here it might be cold enough for the cows to wear them, for tonight in high summer i am presently watching the rain and hope my drainage fortifications to my new adapted extension holds.  Its also bloody cold).  we have fecked the athmosphere as only we can do, the challenges again construct of the omnipotent.

the cows are very much alive and well - in little holy ireland.

I do not write blogs to express bitterness, but to creatively point out that its not always well with the world of both blogger and country!

in this instance we just have far too many cows, to jump!

I used this sort of title in another essay published today in Greystones.com and titled it 'hitting greystones.'

It sprung or should i say leapt to mind how difficult it was to be accepted.

Anywhere really - when challenged in any form, or shape.
challenges come in so many ways and because they do, the more the challenges the more cows you have to  jump and its hard, they line up in a row, rump by rump and you are expect to jump OVER not like a hurdle race, not like stepping stones on silky water but friggin get them legs across all them cows all in the one leap!

its impossible!
the legs are weak and unwilling and so is the mind too.
the cows are large and looming and far too hard for a lidl old lady.
she with the lidl butterfies all over her adapted van.  Hence the reference.

why so may cows?
I contend that we as a country love to test our neighbours to death.
are they man enough to be considered part of OUR clan?
or OUR street.
while they watch us and we know we are being watched we try to transcend the stigma of difference.
thats them cows there you see.
No one who blends, who wears sort of browns, or who plucks the verges gets that much notice as one in a wheelchair, one known to be in a mental health system and one who wears bloody great hats.
Does it ever occur to anyone out there, that basically underneath the hat, is a human.
at the verge of life and lawn is a human too, so whats all the fuss then?

I want all to be at peace.
you go pluck your verge and forget the challenges YOU set for ME, because i have to try and prove i am mettle enough to cut the verge too.
I cannot prove i am!
and of course i wont win, of course.
I dont wear brown, i don't cut lawn edges, i cannot leap cows and i have become disabled and once in the mental health system.

so the kindness to remove the cows and maybe replace with sheep for a better equality all round is simply not there.

even kinder again would be to send the sheep to slaughter and let me chew the cud, peaceable like.
what we all want, at 60yrs of age, and thats no babe i can assure you, not with this body anyway.  I am hoping the mind is nearer 6 than sixty and i feel it is so for that i am exceedingly grateful.

I said all this before, in shades of tones verging on bitterness but trying to educate which is utter nonsense for no one seems to think anyone else is normal, equal or better then themselves.

the omnipotence of the individual rides again.
Not on cows at all or sheep, but self belief that the person who is arrogant, a bully, has money and cuts verges has to be better than the cripple and the lunatic.

who says so?
well we just don't know yet, but before i die i hope to find out.
by hook or by crook i also hope to find out who the hell dropped an orange poo bag annonymously on my new ramp for my hopefully soon to be new electric wheelchair?
if this is the greatness of the individual who is better and more significant than the mere mortal here who has chihuahuas who might or may not have erred and deserved this sort of 'staking the albatross' around this persons head as punishment then there is no hope at all for anyone.
would you really want to even try get to know a person who throws shit at you?
now would you?
who the hell are these important people who feel they can and feel so needy to do so.
own up you bloody cowards, er, not that eh COW-ards!

learning through the decades

from beginning of life to the end we Learn!

but what?

its only NOW that i find that i have er, LEARNT!

did you notice much about learning?
did you learn that time passes for instance.

Did you learn that one day your body will no longer be young
It will be old
it will be in pain
and in the head there will be far more lessons to learn answers for then time permits.
there is also no time for turning back time, the record or the history.

Yes, as an old person now with severe illnesses and disabilities, its not these that actually present the innate difficulties i have at sixty.

its a simple word and very useless word indeed but one i have all the same, its called 'regret.'

i also know that most at the age of 60 years of age do have this word in their head.

what can i do with it, what lesson can i find answers in this.
there isnt.
because regret is borne through being born, living and having a history and being old now.

can i do anything now i ask.
about what?
well, yes about what?
am i plucking weeds just for the sake of plucking weeds?
am i just hanging in waiting to die?
am i in anyway just living and breathing for absolutely nothing at all now?

no i am not waiting to die.
i am waiting to find some answers.
possibly when i find them i will have to say, stop the ship or boat i want to just jump off now please.

i need some answers and some are very big answers to some very big questions.

why for instance did i never find that illusive Love.
I mean, why am i so different that i feel so unloved and unable to give love.
i am not talking about love in a sense of friendship or sisterly love, i am talking about deep and spiritual love for another, where the intertwining of souls to shore each other up through life sometimes happens.
you do find that most pair up, eventually.
and its really to do just this, sustain each other in the difficult years ahead.
but why no body for me?
and still nobody in regard to another, friendship.
you remember the student days of lying on the floor with the cable of the phone threaded under the door to the kitchen so you could be disturbed or heard.
it was giddy and joyful and lovely, and i had a friendship, a deep and sincere and wonderful friendship.
not now.
no.
she got married and had kids, i stayed single and alone.
so these sorts of questions need answers.

and on another matter of youthfulness and joy.
the decades and the generations.
its about party time.
with us as students we only partied after hard work, and the partying was very frantic and frenzied and drug fuelled for many.
but life was tough.
we didnt have a cent.
we had to work to get through college, and work to put a roof over our head and when all was said and done, if your chosen path was not being say a doctor but artist instead then money was never going to be there.
but now i see via the great social media which leaves nothing to the imagination, partying is not a result but a lifelong aim.
its to party more than anything else.

when you are old and grey and sitting by the fire, will take down the book and slowly read and wonder.
why the hell did i party so?
as i ask myself, why didnt i party at all?