Tuesday, September 10, 2013

what living is about

yes, i have thought about this one and thought hard and deep too.

It ISNT about fighting for just about everything in your life, but that seems to be the way it is if you are sick and disabled.

I watch the beautiful ladies and hansome men around jogging, they are my age....i do not jog, i do not walk, and both would be agony anyway.

I watch the older ladies and men walk their dogs...i would love to do this...but i cannot and i am far too tired right now and forever more with mito disease so it isnt an option.

i see the people drink at the coffee shops and laugh and joke.
I cannot sit in such hard chairs, i hardly hear anything because i am very deaf and besides i dont know enough people to enjoy such a gathering.

I know many are enrolling in evening classes, but i am dead by four and rarely go out after that.
i wouldnt hear much anyway and i couldnt sustain the pace nor the concentration and would be half asleep fifteen minutes into the class.

these are normal activities eh?
and yes, i would like to do something along these lines, which can and are possible.

lets take the jog and the walking, can i go out on the pavements and travel happily without the pain and agony and exhaustion that both these activities can and do cause?  Can i say, sit in a powered chair and watch around me, view the greens, smell the autumn and just be part of all that is around me?  well not now i cannot because i have a clapped out powered chair, which constantly lose bits and important bits like wheels and control panels.

can i walk the dogs, yes, i can if i wasnt so tired and spent half my life fighting for basic needs, again the flipping powered chair, if i had this and also was less tired, i could do this in small measure, and i would enjoy it.

what about the chat over coffee?  yes, i can do this, with one or two people in a quiet environment but no more.  I would love this, but in my new home area know absolutely no one yet - as the fighting continues for my basic needs to be met.

classes?  I wish, but the best are reserved for the workers of the world who do such after the working.
i dont work, and by four i am dead.
but surely people are interested in the best during the daytime if they do not work, and there are a lot that do not.  why cannot we have some daytime interest with variety of choice for all of us have different needs.
i would be able for this, cos in the day time i have more energy.

so much of my time and energy is still constantly fighting the hse over powered chairs and access to local services and the dynamic of politic is not what i want to do now aged 60yrs.

i want to begin to be at peace, to enjoy to live and also to create.
not be on the phone from rising time to lunch time.
and not to be at the doctors crying due to depression over such a fight as i was today.

the fight is for just about everything - physio, special shoes, wheelchairs, hearing aids, doctors appointments, bloods, care, pa's coming on time, home helps arriving.

it isnt normal my life, but it doesnt have to be THaT abnormal either.
it can be actually half enjoyable, but if not that, interesting and fulfilling.
i am in a lot of pain so i cannot ever now hope to be estatic about life.
but i have some work to do and it isnt doing the politics over basics with the HsE.

certainly they are creating enough material to document how it has been for myself and this is a testament i can leave behind when i snuff it for others to feel horrified and angry as i have and am and always am these days.

can i not do my bird watching in peace?
can i not have that bucket list of badger, otter, kingfisher and seeing ireland rather than fight for better than the bucket of a wheelchair to do these things.

surely to god i have a right to free movement in my environment with as much ease as is possible or equable to others, more fortunate in the leg and energy department?

i am not a 'nothing,' or a blob.
i am a human being and we are special so they say
so special that every religion known to the species of man dictate that we must consider others, must consider those less fortunate and must care for the sick.
does it happen in reality.
not at all.

but i would like to feel that one day it will all come back and we find some care in the psyche of the humans i am dealing with anyway.

care and humanity in this neck of the woods is hard to find.  i havent found it anyway.
i do know there are kind people about, but managers get in the way of these.
the managers dont care a shit toss, they are dealing with budgets and payments and costs.

they have lost the ideal, of considering how best to make this single human being life worthy of living it in peace and justified help in any shape possible.
for we are the species that is special.
we have the religion see

I am tired of talking, tired of phoning and tired of the HSe.
Living is not about the HSE.  its about living with mito and thats not the same but m living can be had out there but its not coming fast at all at all.
long winded with no picutres this evening, but its been a long day with the hse and the solicitors etc.
off o sleep before i decide on tis n a ee sort o way.

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