Saturday, June 22, 2013

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 waiting......!

Friday, June 21, 2013

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:

Monday, June 17, 2013

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?

Friday, June 14, 2013

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 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!

Tuesday, June 4, 2013

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.
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?