Saturday, September 7, 2013

What is 'the wheelchair' about?

               a duck !  oh, i think its a goose!!

My twin and i had strolled along the banks of the River Slaney at dawn.
we had our sticks and each other.
all was quiet, a few ducks traced the water.
a redness gathered ahead at the horizon and all was very still.

it was glorious.  a hint of autumn in the damp air.
a feeling of freshness, beauty and joy consumed us.
we were for a while at total peace.

we enjoyed this stroll like no other on our hols so far

Maragaret didn't get much sleep.
i got a restless one and i had a lot of pain so we were out by 6am, away from a hot room and out in the air to try ease up pain mostly and stiffness.

When we awakened our thoughts were with the HSE.
i woke with that sticky dry fungusy mouth and in there was - the HSE.
Margaret had been typing on email on her mobile about the wickedness of the HSE.  she and i thinking on this too much and for far too long.

but lest think though further, on the walk.
We were two women walking.
Slow walking ducks!
we were slow yes, and all could see that, and all too could see we did walk with difficulty but we were walking.

so whats it with the wheelchairs.

Yes, you might ask and say 'whatsit about the wheelchairs.'

Should a person who can walk a few hundred yards be given a wheelchair and a powered one at that?

here is the dynamic of walking.
Walking is - Pain.
but if we do not walk, the pain is atrocious all over.
but if we do walk we get exhausted quicker and the pain is more intense in the legs and knees and hips.
but we walk to keep internal organs moving and going.
we walk to get the oxygen in.
we HAVE to walk in order not to seize up.

but we CANNOT walk when other things are up for consideration.
we have a balance and cognitive difficulty.
so going through areas of a lot of people its impossible, three minutes or less of this we can be in a complete collapsed state not knowing how our brain can think of the function of walking, navigating through the people and noise and we are a mess shattered.

Energy is the problem.
We have mitochondrial disease, Mito is the problem, Mito deals with energy only, its their only function, ours is diseased, throughout our body it is diseased, we have less and less energy as the Mito fails further and further, its what i half heartily call 'a slow take out.'

Walking with not a sound or impediment to thought or care leaves ALL of our energy focused on the act of a short walk.

But if there is spin, chaos, clatter and clutter plus stress, talking and thinking we cannot do all this.
so what is the best way forward.

the best way forward is...the electric powered wheelchair.
this my friend is fantastic.
can you imagine how much it can make a free person of a sick person with too much to manage all at the same time.
we can put our finger on the control knob, we can move slowly and we don't have to strain, the muscles which cannot act so quickly or with complexity when all around is too complex.

Simplicity when so ill and unwell.
Simplicity with muscle wasting and weakness means we 'cannot do this,' and causes a sit down in protest of ever getting back up cos its all far too much.

We then do not have to think of one thing, pain in the legs for a while at least.
Knowingly we shall have to walk to ease the body out completely but not done amidst chaos as we would be dead for days.

Wheelchairs are there for a myriad of reasons.
some are in them permanently and some use them intermittently and some are increasingly using them more hours then they used to, as time goes on.
we now are in this final phase.
the Chairs are with us always, powered up always and on the ready always.

the Wheelchairs are used daily, continuously without fail.
the Wheelchairs allow us live in any shape or fashion and its not a luxury, its a reason to be alive at all.
Existing is a concept of the Neantheral man when living and existing meant just staying alive one more day cos being eaten by the woolly mammoth was not an option, we have my friends moved on since then.
we are a sophisticated clan now, and for us we should have a sophisticated way of looking at disability, movement and dealing with people with disability.
and as a last spear to kill the concept of care, we are afraid friends, very afraid that the concept of care of our HSE deserves that spear, for us, we are facing that jaguar, the one of past times and we face it with our spears.
go man go, roll man rolls, rock man rock, wheel man go and roll and run but far from the HSE Please

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