the wheelchairs arrive this week!

soon i will be "on top of the world" again

So great news as our new wheelchairs arrive this week!  at LAST!

this was a grim period of my life - as i now begin to journal the journey

it is about five years now that we have struggled with such awful bangers from hell you wouldn't believe possible to be handed out under any policy of 'health and safety' guidelines.
ones which saw wheels flying off and heading for the city and the patient into a very hard wall.

pretty bizarre that an older person who drove this contraption, had to do so with the full control panel in her lap!

ones were full control panels fell to the ground as you were crossing a road.
ones which had no suspension coils for us with spinal arthritis and nerve entrapment.
ones which were too small for large ladies
and seats that were used by others, which should never be given because of the complexities of the other's conditions which could also mean incontinence and shaping a cushion to their own rear end postural need.

but we have to be grateful (all will say).
I SAY - depending....
if you understand the work it took to get them and the problems beset from day one.
I SAY - depending on why we have received them.
because quite frankly although they will be magnificent and perfect and body perfect for the sickness and conditions we have we know the fight also allowed our personal health deteriorate.

we know this because we are washed out, washed up and exhausted.

NO HEALTHCARE system should allow their staff to abuse the sick and elderly.

A major concern for me therefore has been 'cause and effect.'
the Need for these powered chairs was self evident as repair men were sent on fruitless journeys to our home armed with a spanner and duct tape, yes things were ducted up.

this story gathers as much momentum as a fast speeding wheelchair out of control with mega faults.
the reporter will though, leave out the faults and fase the fact.

• they were and are dangerous.
• they were always unsuitable.
• they caused harm.

the service providers caused and inflicted dreadful harm.  especially on personal psychology of the older clients.

if you see magnificent wheelchairs now been given to the twins, remember with calm the chaos we have been under for a full five years, even longer with other issues we had also to endure.

the strain and the anxieties, the worsening of our health and the constant despair.
remember too, we are not over with the needs we have.   We have many mountains ahead.   a wheelchair is - a wheelchair replacing legs and allowing us to be comfortably able to traverse our universe as everyone else is.

remember, we are very sick and as one manager asked rather naievely 'when you get the wheelchairs, will that be 'it?'
Sadly, my response was 'Alas, No!'

i beg to remind the HSE that wheelchairs are actually a given in a person who is mobility compromised.
its not a luxury and not a sort of fancy tag on with "you should be grateful" tag on.
this item is about as paramont as getting prosteses for a leg long gone.

to sit listening to the now minister for health Simon Harris opening a group seminar on the state of the nation - in the Irish Disability world here, in pain is wrong, I am far left arching back because i had recently snapped both my shoulder muscles after a bad fall, i arch from pain and have a transfer board to lean on because my arms have to go somewhere - due to pain.

all wheelchairs must be fit for the purpose they are intended, to be used safely where the client wishes to use it.

many OT's in ireland today never ask the client how they wish to use their wheelchair, what they hope it will achieve and where will they take it and what will they do with it.

many OT's still do not know how to power up a wheelchair nor how to switch one on.
many do not understand what a wheelchair can and cannot do.

i have watched perplexed OTs fuss around a new or old gizmo looking to the technician for these simple answers.

the OT should be able to appraise.
if they cannot then they will be screwed by any hard-sell retailer or other.

you must be on the ball and the standards right now are rather suspect.

sticking plaster temporary solutions are just that - temporary and expensive - wages, petrol, food, and time (for the repair guys)

Recycling centres for wheelchairs seem to be economically bizarre in extreme, as the duct tape and pliers, screw drivers and screws attest to.
recycling centres to cobble together a moving item for a very sick or disabled person is bizarre

such a grim period of our life - so wilful, harmful and both descended to utter despair, and still do - for the fight isnt over yet.

yet believe it or not you cannot hand back crutches, walkers, and many other smaller items for recycling that would do less harm and certainly wouldn't see a patient wham into a very hard granite wall under power, - minus a wheel.

You look to your wheelchair as the light of your life, the very stuff of existing well alongside your fellow human being.
i do not see it as some kind of freaky add on, a tag on to the word 'ah you poor fecker in that wheelchair.'

i am not a poor fecker in a wheelchair, i love my wheelchair with a passion.
Because i hate the legs and body i presently have and this is a dream job to help me get out and about.

Don't pity me for being in it, and no folks, do not ask me to keep the speed limit and who will win the race as you see twins go together along the road, in our gizmos.
Do not ask me do the chihuahuas pull me along like huskies, thinking that is incredibly cute.

i am a human being doing what everyone else is doing, getting on with my life with appropiate legs.
Do not jump out of the way with 'oh i am sorry.' when they see me sail along - you have done nothing wrong, and you have a right to get your butter and milk and i can wait till you have.

do not give me that pathetic smile as you see me come towards you - i do not read that one well, if at all.
just walk on by as you would every other person, most don't get a cross between wry/why/poor and fecker smile.
do not admire my brimmed hat loudly so all can see that you are talking to a wheelchair user.
i don't shout to others 'LOVE THE HAT!'
and mortify another.

I am now going a-walking as all do.
i am now released from one hellish battle from the HSE.
this is my release.
it is not a bonus point situation.
i am not lucky, it just means the rest still fighting are incredibly unlucky, because its a hellish fight and boy its some fight.

But its also not the end of care, its only the begining of trying to regain a life brutalized by a brutal system of care in ireland and by the state.

Daily we have examples of economic murder in the system.
Daily we hear of gigantuan 'top ups' for those organizing the systems for the sick and elderly and recently one of a 'top up' jump from the previous year of 131% more than the year before, an outrageous sum to go unnoticed and unchecked.

we also have the situation with the use of taxis for the staff of HSE and why can they not be like all other workers of this world.
Buy your own car, maintain it or bus it or walk it or dart it.

why should the state subsidize your travel expenses by means of getting you around by taxis no less.
This is the most expensive form of transport.
If you have a job be grateful because certainly i personally could do with one.

Perks are when the birds outside get the wriggly mealworms and nuts from me, to help them survive.
Perks for a well waged person within our public system is a crime against the very people who are struggling daily and being anihilated daily for even asking!

I challenge all disabled people now - stand up and fight to get your needs met. Do not be afraid that this system will victimize you and give you nothing for asking and  for making clear your asking.

outside the 'House of Plenty'  demonstrating doesn't sit that easily but i believe its part of the democratic mandate to have your say when you know things are all 'arse.'

because asking is a right, the needs you ask for are not luxuries, you are always asking for needs that will level the playing pitch of enabled and dis-abled.

at the "house of plenty"  Dail Eireann, yet again to beg for the crumbs from the table - doesn't the lonesome wheelchair look a sad little contraption?

you have rights.
say it as it is.
and say it consistently in every forum you have at your disposal.
it hurts a lot to do, but i believe until the system understands the word 'equality' we have to do this.

Equality is a word not understood.

all in this state are equal, it says so on Liberty Hall right now - in case all do not know, we have passed the first 100 years of civilization in ireland, we have or should have gone from the potato diggers to the IT specialists 'mentality' but to me we still are at the stage of "if you love me enough, i will do this for you and you can do this in return."
the idea of 'stroking' another as in bribes, backhanders, a gift for a gift, (a leg of lamb for a dozen eggs) is long gone.  Not so in the Culture of Ireland alas, this is Irish Culture, they/we are not used to replacing this with - a wage for a job well done...and nothing more.

You do a job and you get paid.
You help another because its your job.
You do not slay a person who is sick and elderly who asks for her needs to be met.
You do not slay a person who points to the irregularities in the system, the waste, the dangers and the shortfalls.

you should in essence be learning as i have done - the hard way

what happened here?  the control arm was tied up with string - but it came apart whilst trying to put chair back in van, it jack-knifed off the ramp and nearly ran twin down as it lurched backwards at the same time.

Like so...

once something is pointed out, it should be addressed.
not have a legal team second to none to defend the ridiculous and also the downright dangerous.

As for waste?
Well, yes, we have economic murder across this system.
and thats the major fault in our healthcare system.
Patching up makes no economic sense, its a short expensive way and a simplistic way of dealing with some very drastic personal situations.
You sort it man.
Just sort it and move on.
That's economic sophistication at its best.

So while i wheel along now in my chariot i leave that chapter behind me but unfortunately there are more battles to be fought.
Oh for it all to end, i am that weary of the fight.

The cost to the state in their battle with us must by now be enormous.
The 'top-up' recently of a Director of services of 22k for food and travel would have gone a long way for the sick.
Who saw that being done and why was it allowed?
My questions remain many.

The biggest being -

Why do you consistently say the sick are expensive, rather than saying that paying those to care for the sick is overly burdensome especially the 'top-up's to be economically viable.
we are paying too many for doing too little which is - economic murder.

on a beautiful day many are out strolling, staying calm, chatting and replenishing the soul, the mind and the psyche after all no one is free of difficulties and problems.
it is no different for the sick and disabled. we too need that 'space/time out' to do as much replenishing as we can, we need to.
but unlike many when the weather is beautiful, all get out to enjoy, while HSE argued over handing back a scooter or a wheelchair, (both clapped out) they held my twin and i virtual 'hostage' at home, becuase we mobilise together in the same van.  if one persons mobility aid is out and broken, two women cannot get about together.

this is called entrapment, all must be enabled to mobilize and enjoy what ever citizen of this state enjoys.  no one should be held to randsom as we were and we hope peope realise, its against the law to prevent a person from getting out into the envirnoment.

simply put
ENTRAPMENT BY THE STATE
-
IS AGAINST THE LAW
AGAINST THE CONSTITUTION OF
IRELAND

its too tough to say "I love Living in Ireland - when sick"

insanely loveable, bites when nervous and afraid, after that 'a piece of cake' when she trusts you.  Can you allow her trust you?

this is Mama and she is sick, but she adores Ana (above) would never harm her and they have a very good relationship, like Ana, Ann can 'bite' but once you get to know the true soul, a very nice palsy chumsie kinda gal you couldn't hope to meet.

it is just too tough to say "i love Living in Ireland, I love my country,"  It is too tough to like my country anymore and the reason for this is, once i became sick and very disabled, i realised facts about it, i never did before.

i am now frightened in Ireland which i suppose has to be the worst feeling of all.

If you are very sick, have no money and in the public healthcare system you have every right to fear it all.
if you are old, very sick, have no money and in the public healthcare system AND have the community/primary care system on top of this banging into your life you really can truely be fearful.
it is frightening.
lets say been there/done that but unfortunately i have to say 'I am here and i am doing this,' and i hate every minute of it.

my life is no longer my own.
i am state property and nothing more.
so dependent now i have to wait and see if they will honour anything for me as in healthcare provision.
am i worthy of it.
do i grovel for it, because they favour that form of patient.
they love the compliant, maliable and gentle and petit person, especially in women.
men seem to do better because most in the healthcare system are men anyway so there is some kind of affinity by being the same gender.
but for women, thos bolshi ones are the ones that get it between the eyes.

if i tell a person in the healthcare system 'no, i wont take that shit.'
well my friends, start beginning to be afraid.
it only takes once to stand up to them to make it all go horribly wrong for you.

Ask a consultant to help you do something here is so shocking for them they look at you in disbelief, they name call you by not actually name calling but blame your 'attitude' or your 'personality'
or mental health status, even if they understood this or not, its one or the other that has you on the wrong side of the medicine man.

if you have to tackle homecare and primary care well pretty  much worse that one is.
because your 'no' mets their 'no'
thats not pretty.
its harrowing.

more than harrowing.

but lets look at this please.
tell me how it effects the HSE for instance if you stand up to them.
it doesnt.
not at all.
the HSE in its entirety has absolutely nothing to do with healthcare, they dont care.
this isnt myself just saying it, those who are the gentle petite, the calm and quiet ones are also saying it, but actually saying it in different ways and in different forums, but probably not to the people they loathe with every fibre of their being, but 'we' say it together, and can help each other.
many are being abused in this country.
many.
its known in this country.
but is it known in Europe.
Well, yes, i do think it is.

why because we do have the council for civil liberties, we do have people managing to say it to the MEP's and the Human Rights commission, its not 'in your face stuff' because Ireland doesnt do this 'in your face' thing.
they believe in the undercover man.
or woman.

those that will speak in forked tongues but also those who are half in bed with the devil and half out.
just to make sure you get some profit for agreeing to some things and bellowing about others is a way to see you win and also win again.

Ireland has always worked this way.
back handers.
it doesnt always have to be money.
it can be 'silence'  this is a powerful tool.
if you are 'silent' you will get some help, maybe not alot but you will get something, and the down side, it probably wont be enough.
if you say even one 'no' you will get not a lot for your proud confidence to face em with even one fact can tarnish you for life.
for me its now a decade of this shit.

I am losing doctors as if its going out of fashion.
so far i have lost in a very short space of time, two neurologists, one rheumatologist, one ENT specialist, and one gynaecologist and am unsure about the gastroenterologist.

but when they say to you your diseases are incurable, that also means 'go away and die please, and dont die on my patch but please, go bury yourself deep will ya.'

yes, so two of my major conditions are incurable, and they will eventually 'take me out.'
but some of these are not even discoverable yet because ireland is saying 'just go away and die please.'

i have muscle myopathy which is known.
but who cares?
certainly not ireland.
the doctors will not do any further muscle investigations, even though some muscle myopathies can be helped or even reversed once you find out what kind you have.
well we havent got off the starting blocks on that one.
and they wont help me, none of them.
how do you lose so many doctors?

thats a good question, you ask them to help you.
and when they dont and wont, you may get tetchy with them and ask 'why not?'
thats the bit that gets you a bit of a bad rep.
you ask them to help you, they say no and you ask 'why?'
which is reasonable.
and they dont have the lingo to respond the only way they do is pick up the files and walk from the room and leave you stun gunned in a wheelchair left behind talking to walls on that one.
the other way is and this is a super one many others can learn from this because its a fecking clincher for them.
'the relationship has broken down.'  that really means the Divorce has taken place.
"just shove off the planet and die" is what they really mean.

you get that divorce through a letter sent to the GP and copied to you and after that you are dead meat to that doctor, dont cross the door again.

they can also black list you as well.
 but in any small country this is very easy and ireland is small.
they do this by bush telegraph, its the whispers across the social strata and they do it too very cleverly indeed.
they do not tattle about it, they say that medically there is not alot wrong and oh her?
but they can also say 'heavy desease burden' and 'you have a lot to bear' but these are at the beginning of the marriage before they fully read the contract of the vows.
they have a duty and suddenly they realise this heavy disease burden is also the doctor's and they dont want it, so that can cause a complete shift from 'heavy disease burden' to 'there is no cure for your condition so "just go home and die and take some anti-depressants with it, that will help the pain - of the divorce and all other ills to boot.

the other organisation i am even more fearful.
the ones whos extras are rising by the year and who put in for 'expenses' rocketing off the richter and yet deny care to those who are trying to live with a disability on a quarter of the department's manager 'top up's and i mean that to me is very sick indeed.
so for all his little perks and not the salary for which he has done sod all, the sickie is trying to live on a quarter of that.

the problem i have is, we are the expensive ones.
we are the ones being blamed for the state of the economy that the 'sick are expensive' and we cannot cope with the expense of keeping you well, happy or even baseline care because you are expensive.
i beg to add i feel its expensive to shore up the fat cats creaming off the state and the backs of the sick, disabled, poor and elderly.
thats our healthcare system managers and their managers above them.

to me, thats why i loathe this country.
because i am depressed with who i have to deal with in the healthcare system.

i am waiting for the kindly person in either a white coat or a person who actually asks me how i am doing and if i need any help.

but all i get is 'go away' and 'no.'
and your disease is incurable anyway so "what is the point man!"  (woman)!

I will clearly give you an answer to this one and i hope you have stuck it out long enough on this blog to hear my personal take on this please.

i value my life - i also value my twin's life
i would make sure she is warm, nurtured, comforted and helped along, sometimes i hold a scissors to her throat, but in the main, i love her (without the kissing bit)

just in case you do not think so, i will remind you that this is my LIFE, and its the only one i have and i value it very much.
once i am under the soil i am not coming back, unless to haunt you or feed the trees above me.
but once i am gone thats it, i am gone.
and i rather like it here, despite humans making a piss of my beautiful planet and countryside.

i do feel its the humans that are making it pretty much a 'dogs life' of a human life, and look at the woebegone looking beasts here
(like myself, she doesnt have canker or an ear tumour)

but i do enjoy being alive, even though its tough.
i also wish you to know some thing else.
i could be your mother or granny Doctor.
would you treat your mother or granny in a similar fashion?
i dont think so.

so if you dont mind i would like to say i do mind that you treat me atrociously.
I would rather you did not.

I want to enjoy what is left to me.
that means i need your help and i need it badly.
lets say kindly to you without people like me you would be out of a job!
the sicker i am the better off you should be.
ah but then of course, (you say) i am in the public health care system!
there is the political clincher, no dosh.
well not really so actually.
cos there is a payoff.
very much so.
when hospital groups are public/private partnerships, it helps to be able to put your seriously ill private patients in with the best of the critical care, most private hospitals do not have a critical care system, but the public system does.
so you can give your whiskey giving patients in with US, shove us out and put them in.
but the only thing being...you still have to care for us.
which maybe a bit of a pity and a drag on you,but once you signed the hypocratic oath you have a duty of care.
but i dont think you sign that anymore, i think thats gone, hasnt it.

back to my life.
its mine.
no we do not yet have euthanasia in this country.
(reminder there).
I love my life that god has given me (reminder) and as in marriage - may no one tear asunder, as in 'relationship.'
which is your part of the bargain.

One day you will get your heavenly reward, (that applies to the HSE as well by the way).  if you are good.
but you have to be good first!

and i thought i would tell you too...its just a little pointer in getting relationships right, just in case you want to try again.

being warm and kind costs absolutely nothing.
being warm and kind and offering your caring and expert service actually comes back in rebound, you will recieve warmness and kindness and also recommendations, so you see.  its a relationship that could work.

she is now perking up - is there a possibility of a 'loving, caring and warm "relationship?"

but like anything else, who takes charge of this relationship.
the stronger has the power (lets say its man V women, as most seem to be in life, that can be called a working relationship), the pants are on you.

therefore it takes a strong person to go out side the box and be kind in order to make this liason work.
there is fuck all a degenerate, subservient piece of shit can do to this relationship unless the powerful can start and nurture it along.
once nurtured the piece of shit will be so grateful they will be kind and warm towards you.

is it time to be kind and loving, am i nurtured, do i have hope, is there a cat over there i see - or is that a doctor or a HSE official - do they need a lick?

its far better than castigating the whole of bloody ireland on the blog she writes and begins to spead by bird droppings on twitter.
my relationship could be made in heaven (but i would like to stay alive first and be in heaven here first) you never can tell what happens after apart from nurturing the trees.

i would like to stay alive.
and i demand you also do not put me in an 'old persons home.'
because the riot act has begun.
We are in Ireland, holy ireland, them places are the most abusive in the whole of Europe, as proven, culturally we are an abusive society.

so i best end this by saying as i have remarked to many within the HSE and 'other,' thats its all very abusive, i am told it takes time to change a culture.
Duh?
so abuse is culture?
well it can only happen in Ireland that abuse is culture.
i actually rather though we had Yeats, Keats, Heaney, Sean O'Riarda, The Chieftans and god forbid Daniel O'Donnell as 'culture.'
we certainly dont want to make an art of 'abuse.'

but then this is ireland.
i love the land but i am not sure the doctors or the HSE will allow me stay long enough to enjoy it.
cos i am fast falling out of faith in them to keep me alive and they are dropping away like flies from me or me from them, one or the other.
i have to say on parting that i never gave them that choice to kill me off.

but it well, very easily done here in ireland.
so easy and its scaring me.
can any one rope in a kindly doctor?

this is 'Maggie Mai'  no, she is not 'sick' but may be a little chilly and needs warmth and love, no i don't usually provide with a kiss, but then its not that kind of relationship, its the one where warmth and kindness is parmont to trive on.

i need as follows and here is the prescription:
a neurologist,
a gastroenterologist
an ENT specialist
a neuromuscular specialist.
a rheumatologist (specialty please in lupus and sjogrens)
a specialist nurse for rare diseases
a mito specialist
a metabolic specialist
a muscle wasting specialist.

every 'illusion' is sideways on today, but then the allegory of lopesideness is very apparent between the layers.

and finally i need heaps of love (don't worry it wont be that familiar), warmth and kindness and help.

my side of the bargain is, i am able to like you, able to be nice and able to be grateful.
but i have to have you on my side FIRST, otherwise there is no relationship.
cos there cant be as you need a second person here to be on the receiving end of my niceness.

a mutual 'love-in' doctor/patient "relationship" as in caring, warmth and nurture and helping, is an amazing feeling - all benefit, even when the air is chilly.

its a nice feeling to be liked!

A week's experience at all the irish hospitals and with the HSE

what happens when a loaded HSE tries to take short cuts - seriously!

this is the look before the HSE take a crash course through my life and times - seriously!

this was a serious week.  Yes, you can call it that.  It was always also going to be 'heavy going.'
it started with the battle of how both my twin and i were to get to the many appointments we had lined up for this week, one medical appointment a day for the full week.
argument that i simply couldnt drive the van with two wheelchairs the length and breath of dublin environs being so unwell, is self evident.
i do not 'do' even when well, far flung areas where i know the geography badly, i learnt to drive at 53 and i am tired and ill.

arguement won, that i could end up a serious danger on the road if made do it got the HSE agreeing to transport us to the various hospitals, this was a major coup.  I am very relieved, absolutely relieved, unbelievably relieved.

but relief turned to farce as we discovered how this was all going to work.
it seemed as if it wasnt as simple as ordering a taxi that could take two wheelchairs, as we were going to the same places.
no not that simples.
we both asked at the beginning of the week or end of last for help.
one sister was sanctioned for assistence but the other wasnt.
in fact i didnt even get an answer.
the next we heard was, well i could go in the twins taxi but couldnt take my wheelchair with me. er?
so one could travel in ease and hey, put ann in the roof rack or maybe put her in a sort of transport carrier attachement at the back but defo not beside my sister.
the arguement wasnt helped when we heard that the HSE official didnt fully realise that no. 1 if i could actually walk or not or that the taxi couldnt take two wheelchairs, our taxis are only insured to take one.
the reason being i feel not so much the insurance policy but the fact the taxi man would really spend money on getting a second tie-down for a second wheelchair, which is very 'doable'
so when that problem was realised the answer was - two taxis.
two taxis for two women going out from the same estate with two wheelchairs, to the same destination and coming back to the same destination.
on one occassion we didnt need a wheelchair taxi.  that got both the taxi firm and the HSE mighty confused and a wheelchair taxi was booked and then unbooked.

the cost was enormous, i mean really enormous.
the total for three hospitals came to 544e for two women sick in ireland of today.
that is economic murder if ever there was, sure who could sustain such a fecking waste!
and it was a waste.
but then so too is monitering this all.
we had taxi men asking us did we have 'vouchers.'  No, we knew nothing of vouchers, we were told they couldnt take us home from the hospital without 'vouchers.'
"hey, we know nothing about vouchers, we were told to ring in and say when finished but know nothing about vouchers.
that caused massive stress on two sick ladies.
we then had
"be there, stuck in traffic."
"how many taxis are on the way"
"is there one coming for my twin"
"outside the hospital waiting for you" (taxi man)
"if you are how many taxis are coming cos were heard two were and we now had one outside, but is it one of them two?

we had taxi men singing that 'oh for the two lovely ladies my children will have steak for supper not sausages.'
I dont find that funny when the country is fucked.

Nor do i find it funny to sign a black money docket at destination and when i look up at the meter i see the cost and write it in the gap.
"dont put the money in the box" he says, "we havent finished yet"
we have mate we are at destination, i am about to sign as the taxi had stopped we very much had finished.
so signing a black docket is the same as signing a blank cheque.
and the paymaster is the HSE, no monitering done, and the taximan's children will have steak and the HSE no money.

we are wrecked.
i am wrecked
and astounded.
no wonder my country is fucked i say.

the first trip a taxi was ordered for two hours before the appointment, and the taxi arrived fiveteen minutes early at my twin's place.
she rings me and said he had arrived early.
"ask him when one is due for me, will you twin?"
she asked
he then comes to me at my door and remarks, "i wasnt supposed to be at your sister and told to pick up you"
he says,
"so what about my sister?" i ask.
"another taxi is coming for her, dont worry we will be on our way."
so we go.
at the hospital, i ring sister, "where are you"
she had not left her estate!
she flew in and felt life wasnt worth it as the taxi was going so fast and she feared for her life.
she said she was scared in the flipping van.

OK we there anyway and two eclairs down we have the physio as appointed.
now this was to be this wonderful assessment of need.
ok?
you got that now?
this was the 'big un'
like, this was what was really needed, neurophysiotherapy assessment of need for very sick women.
it went something like this for both of us.
"what can i do for you?"
"huh?"  i respond
"what are you here for?
"HUH!?"
she had no notes, no files, no information and she was very young.
we go through a basic assessment of strength, nothing special and all done before.
and i get wait for it, the famous print out.
three exercises to do.
lift the arms up over your head a couple of times.
lift your legs a couple of times.
no i dont know what the third one was as its long gone in that bin.
"it hasnt been proven that hands on therapy is of any benefit."
"oh," i say, "it hasnt?"
"no"
"thats interesting," i remark because to me its the only type that i have found of benefit, its hugely beneficial.
"are you really telling me that because we have no staff and too many sick people its convenient to make the statement that hands on physio is of no benefit or if you have money you get it and if you dont 'its not proven to be beneficial?
so you can say it anyway you want but it IS beneficial and it has proven to work in the past.
but now we are a broken country someone somewhere decides it isnt.
for poor anyway.
not for rugby players or tennis stars but for the poor it is not of benefit.

we go for a cup of tea in tears.
it was so so pointless to bring us over for that.
that cost a whacking 63e there EACH and 73e back EACH, do the sums on one trip, a professional wage for the physio, a cafe bun and tea and we have a few people employed, a taxi man eating steak and twins bereft for the days outing of waste, for both us and the HSE!

Next trip deserves a book in itself.
we get to go and get our HSE shoes, the ones i had so much hope for and waiting for really classy ones since 2009.
now by classy i mean ones that will not cause me to fall and snap shoulder muscles, rip toenails, fracture rib or fracture wrists and nor tear half the skin off the shin bone in another fall.
so for well over two years now no shoes even worn, but since yes, at least four pairs, all causing injuries.
so i was highly excited now i was at a 'centre of excellence'
well was i?
and who was listening to need and what actually was given and why?
Jez i took one look at them and announced inside my skull and brain, "holy moley'  look at them ann!"
i was sitting speechless.
words couldnt come 
"lovely colour" says the lady giving them to me.
i manage a sort of giggle and 'yes, lovely colour, yes.'
i put them on.
'how do they feel?'
'fine, fine"

this is the different 'room' a nice hot water bottle feeling and a slumber

i am gone to a different room space inside my head i am in unreal time, i am zoned out of this one now and forever more.
i thank her and i ask 'how much did that knock back the hse?
"about 900e" she remarks.
"oh, i see,right, lotta money then"
"yes."

there clearly are no further words to say

"right, see you, thanks"
i go and reach the twin looking expectantly at me.
i raise my eyes to heaven when i meet her eyes out on stalks.
i sit numbed and she is summoned.
i sit there feeling the clumpers at the end of my extremities.

the shoe on the left was paid for by insurance and is fantastic - i didnt know what was going to happen when the HSE ones came and feared the worst - i was right to do so.
the left weighs 11oz and is soft and gentle
the right is 14oz and is thick and feels like cement and painful.
i clearly was right to be wary and prepared the way for the outcome, i was so clearly right - no happy clappy feet after this encounter with HSE clumpers - yet again.

further words fail me

words don't work anymore faced by this

or this...

i am left speechless...forever more, i think

i am not a happy bunny with very unhappy feet.
my feet are encased, in concrete, they burning with heat and there is nothing i can do.
i am encased.
its all very distressing as i feel it all too badly and my neurosensitivity is getting the better of me.
they come off and i revert to the slippers, i doubt they will be worn again.
i sweat it there in inner pain not knowing what to think, do or what to say forever more on shoes for ann.
my twin comes out with a neat brace but she not too keen on the insole, which sticks up into the arch which is a cavity due to pes cavis.
we both go home, i am an unhappy woman.
the money side is mounting up.
next trip then was to be a sorting of an issue that is frightening the life out of me, another very long taxi journey and another consultant.
i am well prepared and have my homework done.
i get only general bloods.
there is a heated debate on what the hell general bloods would do for a metabolic issue.
he cannot explain and i do not believed he had heard me.
why did he bring me to the other side of dublin for general bloods and not a metabolic work up?
why could he not have had a conversation on the phone if that be the case and i get them in my gp surgery on monday and i have an appointment then.
sure jez metabolics is more sophisticated than general bloods.
so all the doctors in the uk suggesting my malaise to be possible pre-synope, dystaumonia, POTS or hypoglycemia has not been tested for, i wasnt in the UK for these, but they listened to the symptoms and asked for these conditions to be tested for.
you wont get that on general bloods.
i come home and count the damage of the week so far and what i want to do.
i want to escape a country going down so bad its taking its sick people to an early grave and if not then it will through suicide.
the cost in financial terms for hse this week for two women has been 1,384e  i have not counted in my twins special leg brace nor the consultant's fee, the phsyio fee nor the othotist's fee, so for all that money we didnt as patients come out with alot.
we spent a full week travelling to doctors, for nothing.
i mean nothing at all.
wasted. i am wasted and shattered.
money to burn so they have i say if they cant do it better than this.
thats my week in economic, physical, psychological and outcome terms.
these are not terms of engagement but disengagement from my country.
i hastily write to another consultant, two in fact and say 
"get me out of this country"
for a start it would be cheaper and i may get some place.
not this way i wont.
i suggest you now look at some pictures. they are all worth it to digest the enormity of this farce

living at the extreme end to THIS i guess is a feature of my human's life, but clearly it wont be equal to the calm of Ana And Maggie as they stay cool, calm and collected and rest while I am too tired and too tired 

i am too tired now to continue and bloody glad the week has nearly come to an end.
raging i decide i have to get a life outside sickness or something will defo 'give.'
or i shall commit a murder and end in jail.
i kid you not.