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Thursday, 27 September 2012

Paying The Price

There is so often a cost to what we do in our lives.
 Our actions may hurt others or sometimes even ourselves.
Since being diagnosed with Arachnoiditis 18 months ago, I have realised just how true this is in my own life.

After receiving unprecedented media and public interest in the cause I have been working to establish  for 20 months now after we went public only five weeks ago- I have found myself stuck permanently at my computer engrossed in the task of completing the complicated legal paperwork of establishing the charity in law.

After pulling 'all-nighters' at my desk in the vain attempt of meeting the deadlines set by the lawyers and the governing bodies, and racking up a phone bill in the triple digits- this Friday just gone, all of the above became worthwhile when The Charity Commission for England and Wales appointed 'Get a Life! Charity' with our much longed for Registered Charity Number.

  1149041, the most beautiful number in the world!

I spent the weekend buzzing with excitement and a feeling of fulfilment that all of my worries and work had finally come to fruition. We are off, and finally in a position to start making the much needed improvements in the provision of emotional care for those who have become disabled and their families.

...Back to Friday, and I longed for nothing more than to go out on the town with my husband and dear friends to celebrate properly; but as evening drew near, so dawned the beginning of what was to be 120 long hours of unrelenting nerve pain.

The elements of my disability are such that I suffer constant muscular and structural back and leg pain and spasms as a result of my spinal injury and subsequent surgery back in 2008.
In the autumn of 2009 my situation was made all the more serious by the fact that a degenerative neurological disease was secretly taking hold of my body as a result of an infection suspected to have been obtained from one of my many spinal procedures.

Since then the most serious and debilitating factor of my disability has been the neurological pain that rips through my body on a daily basis as a result of this disease.

This nerve pain is made worse by any activity however light or brief, and is even exacerbated by simply sitting in my wheelchair for longer than half an hour.

When I do either of the above, I always pay the price in terms of immense nerve pain and incredible cramps in my legs which leave me unable to move or even concentrate on anything however trivial or insignificant.

When I do too much of any of the above without resting by laying down with my legs and spine supported by a specific configuration of twelve pillows and cushions- I end up in the unbearable state in which I have found myself to be this last week.

My pain is relentless. My pain consumes me and leaves me unable to concentrate on anything at all. My pain leads me to long for release of any kind, at whatever cost. I dream of release of any kind in my darkest moments in the middle of the long nights that I am awake.
My pain rules me and robs me of not only my physical function, but also my ability to function sufficiently in a cognitive or emotional sense also.

In the last 36 hours alone, the 'volume' of my pain has not been turned down even slightly: day and night I have battled to focus on something else in the vain hope of having some rest bite however brief.

Friday saw the realisation that I had achieved more than I thought would ever be possible even 18months ago when I was diagnosed with my degenerative neuro disease.

So the big question- has it been worth it? / Is it worth it? As lets face it- this is the beginning of a very long road.

The answer this very moment that my additional pain killers have given me that longed for feeling of the nerve pain and cramps being 'turned down'- ( even though as I type, I can feel my nemesis racking up in intensity to fight back against the morphine once again!)- is a very certain and emphatic YES.

YES this is definitely worth it, as each time I have such a setback, however hard it may make even the simplest of tasks, it's emphasising the point of why I have established this cause in the first place.

At 4am this morning when I had not slept before 6am for the sixth night running, as the pain would not allow me even the release of sleep; I am not sure if I would have answered the same question with quite the same emphasis: however in my lucid moments, there is no doubt in my mind whatsoever.

The work that Get a Life! is working on already, is SO important to me, as I have lived through not only the physical pain, but the emotional pain of the guilt that events in my own life were affecting those around me who I loved so dearly; the bereavement that I was never going to live that physical life I had naively anticipated always leading; and the stress that both of the above were putting on my marriage, my relationships with my parents who had to look after me like I was a child again whilst my husband was away with work; and my close family and friends who I could no longer be of any use to in terms of repaying favours or even talking on the phone, due to my pain and morphine side effects.

I never want anyone to have to experience the levels of pain that my family and I had to- mostly because if common sense prevails, and we realise as a society that you can not simply just fix somebody physically and expect them to muddle through the emotional transition to accepting disability themselves without support or guidance; and of course most importantly if we can raise the money to provide this emotional care to do this- there is simply no need for them to have to do so.

 This is why in this instance the price I am paying is worth it. The pain is immense as a result of my work, but the need for improvement is just too great.

Not only that but 'Get a Life!' has an amazing team of trustees, consultants and volunteers all working for this greater good that could and will change the lives of anyone who becomes disabled or is related to somebody who becomes disabled; and lets face it- that could be any one of us. Disability is indiscriminate.

Get a Life! is aiming to provide people like myself who once took for granted our ability to exist without pain- with the emotional support that is needed to adjust, adapt and embrace the circumstances we have found ourselves in through no fault of our own.
Get a Life! is also in the process of establishing support for the loved ones of people who have become disabled, whose lives are also affected so dramatically.

If you want to be a part of this new and exciting project to bring about much needed improvements in support for people who could be anyone of us at any time, as disability is indiscriminate of wealth, age, gender or emotional or physical strength, then do please contact us at karrie@getalifecharity.org.

 Sadly nobody is immune to the potential of this happening to them: so please help us to create an infrastructure of emotional care, so that the help will be there for people who find themselves in this position in the future.

Please excuse the spelling and grammatical errors in tonight's post, but unfortunately my pain is still nothing short of unbearable and hugely affecting my concentration, so it is off to bed for moi.

Wishing you all a happy, healthy and pain free weekend.

If you are interested in finding out just how it feels to be the mother of a grown up child who becomes disabled, then do please read my mum's testimonial.  A Mum's Perspective

And if you are kicking about with nothing to do this Sunday between 2pm and 4pm and 10pm and midnight, then please tune into Isle of Wight Radio on line Radio Interview to listen to me on the country's longest running non-stop radio show talking to the wonderful radio personality John Hannam about my life both pre and post disability.

Night all. Sleep well.

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