I have many questions to ask of the HSE!

when i am old and grey, i shall wear purple and rattle my stick along the railings.
spit and lie down when i am tired.

but although this quirky poem has the right ideas and ideals, we don't do this.

we do not just let it all hang and chill when we get old or older.

there is the pressure in modern day society about actually being SICK when you are old and the worry that can bring.

In Ireland i guess this is profound, for we now are growing and going the way of most developed countries, down a road i detest.
its called 'inequality' and we have that in spades.
during recent times of austerity we have been butchered to death with cuts, those of us on benefits and public health provision.

There is worry.
Severe worry being sick in Ireland.

It is strange that the middle classes and those of that ilk cannot see how this can happen.
The worry, that is.

Its strange they cannot see why i bother to educate myself on my rare condition i have as there is no cure nor treatment so why don't you just 'live.'

They also do not understand the awful fight we have with our detestable HSE.
They see two individuals as they call, being cared by the state so why worry.

It isn't like that.
Its like this....
you need a better mattress and cannot afford one, you never worked.
You ARE entitled to ask the HSE for one, they ARE entitled to help those in public health care with providing items that make life worth living and pain free.

Thats in the old ireland and in an ideal world i am afraid.
You fight for this mattress to lay a weary head.

The difference so is this.
The poor and public - fight
The wealthy and private - walk into a shop and hand over the credit card.

For the poor an item of need can take as long as three years.
For the wealthy or middle income bracket it can take tomorrow to provide or at most, a month.

Imagine too if you have a neurodegenerative disorder and need a wheelchair.

The wealthy can say shocking things if you suggest you are going to fundraise for these.
They will get angry and they will feel a level of shame but also have a right to say 'other people are worse off.'

Yet the poor have to say 'i cannot take the fighting much longer. i cannot continue the awful stress of it, its killing me.'
It is,  for two elderly women!

Remember for the wealthy they just buy the darn thing and no middle man!
For us in the public care system we fight and have to fight, there isn't that option at all!

It is three years now with our blasted fight.
We have had assessments by the score by many many people such personal intrusion and prodding and poking, yes no person who feels themselves superior would stand for this!

We have had critical letters, objectionable letters and excuses and prevarication on a grand scale.
Secret meetings about you have taken place without your knowledge.  Assessments dressed up as something entirely different have been done in a very vile and coercive manner.

For the wealthy they just buy the darn thing and there is no middle man.  They do not have to have the indignity of facing three health officials you have never met and have a scarf rammed under your bottom to try straighten a kicked out side, this is called the scientific method in the public health sector!

For the wealthy it can take as long as a month to buy and making sure they get it right.
For the poor it is taking longer than three years.

Remember too what this item is for - mobilizing.

Now we have it again here,  the difference.

the middle classes can say:
 You can walk and other people are worse off!
Don't shame us.

We say we cannot walk!
we have too much energy depletion to walk far and dystonia free, muscle wasting free, these days, we also have too much severe pain.
I don't mean to shame you but i need the frigging wheelchair.
I need to fundraise for it, its awful being without.

people are very blinkered on the provision of health care when they have it one way and many have it another.

The people who are covered by Insurance and back up wealth cannot see that those in public health care actually die sooner and quicker than they will!
this is FACT and known to be fact.

Why should i be wasting away in terror (of the hse) in stress (due to the hse) pain and disease (with no consultant) and little communication or services?

Also when a middle class or wealthy person gets on in life, its easier to keep up with the crisis and the degenerative process, even if its just getting older.
You just get out the credit card, or you may have the professionals as actual friends, due to the strata you mix in anyway.

Many of lowly ways do not.
It is never that easy.
It isn't easy at all.

You have to negotiate your ways around the fact that it can take a year for a doctor to tell you the results of major medical testing!
Whereas if you have private health insurance your doctor will ring next day and explain and explain in real terms, nicely and in a conversational manner.  After the explaination you go about making amendments to living arrangements, a wheelchair for wealthy can take a month for a sick person it can take three years.

If my mathematics are right on this, the wealthy has sorted this in one month and one day.
the poor have sorted this in a year followed by three, making it four years.

here it is in stark figures:

Wealthy -  I day + 1 month
Poor       -  1 year + 3 years

i can see there is a vast difference.

If you are 56 yrs of age when you started this process you are 57yrs 1month for the wealthy when sorted.
for the poor you now are now an old age pensioner aged 60 and have jumped another barrier far too soon!

But if you are in the public health system the doctors will do nothing outside your six monthly visit.
they will not answer phone calls, emails or letters. period.

this is something those with money  don't realise.

So for one even within one family the stress can be enormous around health issues.

I priced a med or suppliment prescribed in the UK, at a centre of excellence,  for me yesterday.
it was 36e for a months supply of 100mg tablets, 30 in the box.
i take three of these morning and night.
sure where will i get that kinda money?
its not on the public health prescription list yet its the only med proven for my condition.

i presently am not taking it, its believed to arrest further decline and slow down the decline. Wealthy people do not understand this.
A few extra outings give or take and they will have the medication to prolong their lives so that the outings missed may actually occur, given time.

Depletion now from the circumstances have my twin and i bolting away.
Firstly to get information on our disease as it certainly is not forthcoming in the Irish public health sector, and we have to do something.
We are also removing ourselves from the profound stress of our daily lives.

Our life now is centred around health.

All morning is engagement with health issues, leaving little time and energy for enjoyment the rest of the day, usually taken up by being on the horizontal.

Wealthy  1 phone call - to the doctors
               1 month - manufacture of wheelchair to                
                resolve.

Poor      6 months - to get the doctor
             3 years fight - to get wheelchair
             3 years to resolve

We are presently depleted.
From the fight.
Depleted BY the health service, the HSE and the doctors who will not communicate or even help.

We are stressed, a situation that actually makes our disease worse for being an energy disease stress eats into our well being like no other condition does in its own right.

My bolt will be to rest, not be hear within shot of a HSE officials.
It will be resting, and thats it and thats all.

Flat resting.
Then we have to come back and face - the HSE.
the fight for the wheelchairs.
mattresses,
shoes
physio
bath chairs
communication with doctors who refuse to communicate
and stress over prescription charges,
hearing aid mending and acquiring.
heat for the winter
and so much more.

I ask a wealthier person do they have to do all this on top of the disease itself.
i want them to also take back the notion of

'you are looked after by the state, you should feel lucky, others are far worse off!'

thats for another debate,
right now i am sick to the teeth of the blasted HSE.