Friday, September 6, 2013

the rock and roll wheelers

them tired old wheels, and the tired old boat, on the raging seas and the ship wrecks

we are on the last stretch of our holiday.
a holiday created to rest, forget and attempt to chill.

"oh how fantastic eh Mags?  isnt it beautiful....?"

Its time they let us  enjoy eh, sis?

a holiday to de-stress and forget and attempt to regain strength, especially psychological stamina for tthe battles that are ahead.

the challenges for my twin and i are and will be mighty.
there isnt the support there.
there are the basic of statutory supports in place and even some of the basics are literally falling apart.
but twin and i show guts so we do.

i am unsure if this can be considered a holiday.
how many have to be brought up sharp on a break away from the chaos of the HSE to get online to find another offensive email from them to say i am being reassessed for a motorised wheelchair.  I have been assessed in february this year!
why again?
and why tell me now?

also is it useful also that the HSE have now given me an OT from Wicklow, which is a lot nearer than Arklow but not as near as James Reilly had intended, Primary care teams spring to mind, where he dictated that all in a local area would be able to access care and community services locally.
but actually wicklow town is not 'local' for me.

the distress of being targeted in such a way is wearing me down in a major way and all i can think of its supposed to!

this must be the very reason why disabled people in ireland fight for so little and fight for it less visibly than any other country i know.
we just are not there doing what we should.
fighting for our rights and our dignity and being courageous of stating our needs and attempting to have them met.
its only this way can able bodied people see that we do firstly have needs but that we can and do get these met.
but mostly because, its our right to have our basic needs met.

we are not talking about something wild and exotic and extraordinary.
when disabled people fight, they fight for things that no one else needs to in such a way:
help in getting up in the morning.

oh i remember the days with fondness when i ate wet sandwiches on the Saltee Islands with Birdwatch Ireland.

to stay in the community and not be put away in some dying cage.
to move around the community areas freely and safely, eg in a motorised wheelchair.
to be able to drive a van without being penalised and told well you have a van why so the mobility wheelchair then?

to have to justify trying to have a life, is something able bodied people do not even blink about.
they know they have a life, they live it and never think twice.
but some disabled people are dealing with major issues which are basic.
mobility, washing, dressing, eating and lastly living.
its not usual to put Living and living well at the end of a list like this.
if you cannot get out of bed, cannot eat, cannot wash and do all this independently then you cannot begin to live.

also its wrong for anyone to threaten us with less than what we should expect because we ask for it.
it is wrong for anyone to interfere in our lives, without actually being part of our lives.
it is also wrong to make our lives harder than they have to be.

but when i say too that wheelchairs roll.
my twin and i are attempting to have a short holiday.
a week is not a long time after three and a half years of hell is it?
no it isnt.
and living for most is easy eh?
well, more or less, certainly better than someone ill and disabled.
so we go on this holiday and try to do it in best cheer but certainly cannot in best chair.
my twin twice swung round as the joy stick didnt obey her command to stay straight and not head for gullies and campers.
she wants to guide her legs, in the shape of a wheelchair in a straight line and not toward the caverns or the dangers of oncoming traffic.

it is a right of ours to stay in a straight line!

i shouldnt have to be in a machine that whines loudly in my right hearing aid.
and worry if the wheel will fly again soon.

who will be making our holidays impossilbe soon.
it will be of course of famous howling, 'not fit for purpose' hse.

we have not really enjoyed this much.
we are too tired to pretend to be like others, do what others do and still have enough left over to enjoy ourselves.

we need more help to enjoy to be truthful.
who will drive us.
who will stear the wheelchairs.
who will go to the bar and order.
and go to the bank and queue if we run out of cash (that sounds very funny in our times i have to say).
and who can make sure we can get our luggage packed, unpacked brought to the room where we hit the sack and do all this again in reverse.

what happens is,
we have to get up before the breakfast ends at 10 and we are actually still dead by this time.
we then go out for a few hours and we are grumpy to each other cos we both are ill and find it hard to deal with each others foibles.
we get a few good hours in the middle.
and sometimes half way through the end
but we do by the time 2pm comes along just want to be horizontal.
mags my twin flung onto the bed this evening at 7pm after we went for some food.
"I am not sure i can do holidays anymore'\
in truth we cant.
since that statment my twin has been fast asleep, she still in her jacket and hard shoes.
she is too tired to even move.

Love, kindness,help and companionship and a better spirit from the HSE would all go a long way to help twins aged 60 see out their last years in peace, harmony and ease.
no we dont ask much and not alot more than that.
Peace and harmony is not alot to ask
we are 60.  we just want a bit of 'soft around the edges.' so to speak.
and some help, but that is not rocket science or too much to ask, given we are so severely ill and alone.
tonight i ask the HSE primarily to get off my personal back and try see me and my twin and our relationship and how you are even trying to destroy that, but see us as - wait for it - geriatrics trying to make up for lost time and enjoy what we have left to enjoy and enjoy what we can of each other, after over 40 yrs apart.

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