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?

web of deceit, silence, confusion and collusion within the HSE and the Minister for Health department

I have to admit that it was the most shocking video done undercover here in ireland into what is going on in private creches in this country.

we have at the end of the day a situation that was well known.
where basic regulations were broken in 75% of creche facilities across ireland.
these include abuse, violence, reckless endangerment and emotional torture akin to quatanamo.
we are living in a country which knows about babies and toddlers are treated as poorly as no more than baby animals.

and its all KNOWN to the HSE and to the Government of the day.
the minister for children declined to come to the studio to face both us the audience and the panel.
this is cowardice.
we have recently had Reilly up for a 'vote of no confidence, and today Shatter, so we cannot afford for this government to be seen to do badly in yet another state department within the political party that holds sway in our present government.
this can only be the reason why she did not come onto the show.
I was an invited guest but my twin on this topic was the expert.
as i would have said too this ISNT about care of children and vulnerable, its about PROTECTION of very tiny babies and toddlers who will be the next generation.

but i have also to remind people here of what happens within the HSE and the Department of Health when there are 'issues of care'
we see within the HSE the reasoning of the greater good of the department over the greater good of those for whom the department has been created.
this abuse is widespread in ireland.
I personally have great experience of HSE abuse and bullying.
Only today another phone call from the company asked by the HSE to come collect my powered chair.
i have repeatedly told the hse i was not relinquishing this chair for love nor money.  i have a neurodegenerative disorder and the consultants know i need it.
we have HSE managers in this instance never knowing me, meeting me or bothering about me making these decisions and continueing to harrass and bully me with all these shocking repeated phone calls, one day i had five alone!
we know that vulnerable people are least able to defend themselves, least able to effect change in their lives and least able to speak out and be heard when it comes to injustice they have been metted out.
i also saw it within the nursing homes for the elderly.
inspections are known to occur.
but so do the nursing homes know when they are occuring.
the ladies and men are requested to wear their very best.
the time table for activities is loud and clear on the wall for the inspector to see and some artwork slapped up on the wall.
but reverting back to inertia, no activities at all and Mass being the only break for the elderly in our irish nursing homes.
i have seen swollen feet from a woman who was too afraid to mention her feet were hurting after i asked why her shoes were not done up.
i have seen abject misery in private nursing homes, public and religious run nursing homes, i have seen neglect and abuse and awful abuse of power and deceit.
but i also believe as i believed today.  the government and the department of health knows what happens and so does the hse.
nothing is done.
ditto in the mental health services.
we as a nation are diseased.
we suffer inertia and complacency.
we havent the wit or gall or stomach for a fight of the kind that will make lives better for the least able.
we are fast becoming a selfish self centre and egocentric money needers and that is all.
nothing else counts.
what i saw on the videos should send alarm bells across this country.
for ever sector of care there is violence and lack of accountability, no one will be made take the blame at the levels where the blame should be laid.
in a personal fight to the bitter end which it will be my battles with the loathed hse are far from over.
but many now see that the hse has a policy of silence. a policy of neglect, and a policy of deceit, all on a grand scale not just on a small scale.  they will protect their institution to the death even if it means the innocent gets wronged or hurt, they least care.
as with everything when we do something we do it on a large scale.
when you consider the army wasnt even able to protect a retrieved illegally held tanker of diesel confiscated from criminals and given to safe haven to the army. then we know full well we are on an explosive collision course with death of a small country, simply because most are asleep, clicking mobile phones constantly or watching the telly or doing all of these eating a bag of crisps.
that is our government.  and when the bag of crisps is finished how many slammed it to a bang?

a tougher living 'society' than need ever be

this is a heartfelt opinion.

we are indeed creating a far tougher society than need be and i think i know why.

We are greedy.

it doesnt amount to much more than that.
A society has sprung up now that Money is the god of all.
nothing else matters - not even humans or animals, the planet we have nor the way we threat any of this.

What society has requested is, people work as hard as they can to make money.
For themselves - for so called 'better quality of life'
and to help the government run our various countries and departments.

but the first cause is to make as much money as one can.
so when doing this the powerful have written into the payroll vast amount of fees and costs and payments for work done and in most cases never done.
the rest of the people try to make up on this, try to reach this cache of the funds.
thus walking all over everyone in the process and getting this money by devious ways and dishonest ways.
it doesnt matter about the sick, the disabled nor the elderly anymore.
nor does it matter about your relatives either.
once most children become students the idea of family has gone.
the idea one should even care has also gone.
Once the college is done and dusted taste of the extremes of living has taken place and then the slog of obtaining the elusive money begins.

all else is out the window.
we now have children, teenagers and young adults whose only concern are themselves entirely.  no one else and nothing else.

we also have the rising rich and the rich getting richer, also by stomping all over everyone, this includes the young and the old, everyone gets killed off as viable humans by those enabled through power to do so and enabled by job discription to determine the fate of others and also to determine what they get to determine the fate of others.
mostly the politicians and the trade unions are doing this.
a basic days wage for an honest days work has gone.
if you can make your disabled client paint the masonry walls of her new home while skiving inside painting the skirting boards and playing loud music and munching through out the day so be it.
the disabled person has drawn these people in to work and half way through have ditched all the agreements one by one, leaving a single woman aged 60yrs doing wallpapering, painting and decorating and also the masonry walls themselves.
also the workmen so sloppy and irreverant and uncaring, who cannot lose the days pay for no one sees what they are doing, lose items within this house that are very costly by tossing them everywhere in the beginning.
namely housing security sensors.

this is the reckless new youth.
the men who think that if they do nothing and know they can get away with it they will and at the end of the day bag the same amount of money as they would if they had actually done more work. there is no incentive there.

their bosses meanwhile are running up and down the country obtaining new contracts possibly verbal and gathering fools along the way to pay them for old rope and not actually doing any project management but leaving the young to undertake the work on their own without supervision or guidance.

slowly we see the dynamic of panic.

money is evil but people still can reverse the trend that people, animals and the planet mean something to them. that they are as important if not more so.
as one grows older alone one realises how precious it is to meet another, chat to another and engage with another.
people are very precious.

and when we get old and sick then people are even more so needed.
but the plans are being laid down today for the pathwaying of us who are so expensive.
the putting away of us who are causing difficulties for precious youth and families.
we are nobodies.
we also can be twisted and coerced and manipulated if not very careful.
we are losing our confidence slowly by bullying.
we are losing our will to live through the drastic cuts to the state spending on us for our basic needs.
we have no focus, no meaning, no joy and no people
we are the people who are causing all the problems for the world!
we caused the financial crashes around the globe, in the UK, Ireland and America the screaming is the elderly and old are costing too much.
in a few decades the agenda will be that each person will be allowed live to the age of say 50 and after that we will all be put into an igloo the air hole closed over and sit there until we die of starvation.
the younger then move on to survive but we are not allowed to.
it is happening now and i feel it very much.
if you knew how quickly this can creep up on you, maybe there would be a drive to make sure that the quality of life remains for as long as a person cant think and can have a role in life.
but quality of life to belongs to the elderly who have no role other than the need and love of live who want life and want to embrace it.
who want to engage with the youth and teach skills where ever possible.
all want living.
the dead do none of this and thats our end.
why make it hell for us now.
i am 60yrs old.
when i got sick first i vowed to Prof. Nunn of the Dental hospital dublin ireland that i would remain positive and remain laughing and happy.
you cannot do this. it isnt possible in todays structure for the sick and older person.
but can we reverse this awful trend of dismissal.
can we make it better.
if we can please place your own suggestions to this blog as comments,
i have asked for comment s and that is why the comment facility is on this blog to either join in a dialogue or make your statement.
many hands on the agenda push the agendas.

being 'past your sell by date!'

Huffington post has mentioned the crisis of an ageing population and the antagonism amongst the younger generation for us even trying to live as we once did.
Old age is not a SIN.
its a process we all go through.
YOUNG age is also a process and moves towards Old age!
Money which seems to be a the root of the agism hatred and our perceived 'nuisance status' is not a good enough reason to reject what is now the majority of the modern day population.

We have science to thank for the population continuing to live on and stay active and healthy.
This is called progress!
the individual who decides for themselves that they want to live, can live and can contribute should be equal in the eyes of society.
because i am slightly grey on top but very grey in the sense of disability there is little wrong with my ways of dealing with life.
slower yes, and more stressful definitely as its a war zone out there being disabled now.
In any country.
I know it is not easy to even think about this sort of problem if you are under 30.
even harder if you are out of work.
harder still if you have aspirations and the jobs and chances are being held by older people.

but again this is called the process of civilization.
let the individual wrinklie live on.
for sure the wrinklie has contributed and can be a stalwart of society in many ways
Let the wrinklie be the best wrinklie in the world.
that what most wrinkles need and want.
It is no different really to what young people want.
All want to have the best.
the best that society now says is there for the taking.
so if we take it isnt selfishness!
its called equality.
and its called fairness.
tell me why i should die at 60 with a very good active brain.
die so that others may live.
die and sit around and feel that most resent me and my needy body.
that i am past it and should be put up against a wall and shot.
No.  No one should be put up against a wall and shot.
those who do murder in some countries are.
and condemning wrong is right but condemning the right to life is also very wrong indeed.

the HP also stated that there was profound resentment amongst the young especially against the elders who act 'too young' and dress 'too young'
who actually states we should dress in sack clothing.
again we live in a modern age of mass production and the commodities of dress are relatively cheap now.
colour too is vibrant and exciting.
why should my dress match my hair because the generation below me think it should.
why should it?
I enjoy colour.
I enjoy the younger generation (those in my family i never see and they never bother to ask if i am ok, this being a sign of the times).
i enjoy hearing of life from the younger generation.
and i have recently held a baby from a young mother and love it all.
but why, if i can love what the young have to offer, can the young not love what i may have to offer.
its very odd indeed.
as an oldie i am saddened by attitudinal changes for society and within society.
saddened that many young people hardly ever think of what we termed 'charity work.'
now charity work is paid work.
but charity work was not that for me.
it was something i enjoyed and loved, to care and offer when i was strong and gifted and willing to listen (to the elderly through 'friends of the elderly')
but the youth think that as a concept very 'stuffy' and 'of no worth at all. it doesnt create a career path.'
but it can!
you can be seen differently.
a person willing to offer...this is a view.
a person who steps outside the norms... this is seen as inventive and creative.
a person willing to be patient ...a character trait needed in many companies amongst the rat race that there is now.
but also perserverence when things are rather dull at times and tiresome.  this is about the best trait to have.
jobs and money dont come landing and dont come exciting, in the main.
you need patience, perserverance and determination.
we elders can teach.
the 'new way' is the 'new age' of young and old working together for a new world.
don't knock it, tomorrow your day will arrive and you will wonder where did time fly
in the meantime i am on my laptop and i am determined to stay youthful in attitude and determined, as this is a trait i learnt myself from no less than - the grey haired brigade
images above are taken at a nursing home for blind elderly, the young man embarrassed at first to hold a small dog, he came to learn about 'giving'.
the older of the two, is a fantastic woman who spoke volumes to me and to a very small chihuahua, she is blind and had been 'put away' since a young age.
we had a good afternoon that day!