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Wednesday, 13 July 2011

My Diary Extract…14th June 2011- The Day I Became Defined by a Diagnosis

Today I attend St George’s Hospital Tooting, for an important & extremely significant consultation.
At 13.45pm I am due to sit in front of my Neurologist to receive an answer as to why my neuropathic pain has increased & my mobility decreased since my spinal surgery three & a half years ago.
With a suspected diagnosis already five months in hand, I am naturally full of anticipation; however what may surprise you, is that my apprehension is less about receiving confirmation of the presence of the neurological condition that I am suspected of having & more that the tests will prove that I do not have it.
Weird- I hear you say; why on Earth would you want to hear bad news? Attention seeker? Munchausen sufferer? Why?
Of course, I do not want this bad news- (who would?), but when faced with two possible outcomes I’d rather not rejoin the limbo train that I have been a passenger upon for the last five years, (that involves facing further tests & investigations) & instead live up to my fate & get on with my life whatever shape & form it may be about to take.
In these circumstances, what is the definition of ‘bad news’ anyway? Is it knowing the details & the magnitude of the battle that you are facing? Or is it remaining in ignorant limbo, being told that you do not have that daunting disease; but have to endure being passed from pillar to post, consultant to radiographer for another month, year or decade instead?
I really believe that in this scenario, knowledge is power. I would rather see the face of my enemy & stare them straight in the eye, than live in the darkness wondering what & where things will attack me next.
There were high hopes pinned upon my spinal surgery fixing my injury & its associated issues; but unfortunately my op was not without its complications & the most notable of these came in the form of me contracting pneumonia. The pneumonia significantly prolonged my recovery, yet when it had been & gone & improvement was still allusive, there then followed a succession of dashed hopes.
A chain of convoluted suspected explanations were each promptly followed by vague dismissals & frustrating repeated promises to refer me to yet another consultant.
I believe that there lies within all of us who dwell in this our supposedly civilised country; a cockiness & certainty, that should we ever be unfortunate enough to experience injury or illness, that our competent NHS, (or even BUPA, BMI or AXA PPP), will diagnose & treat whatever should so be the problem.
Diagnose & treat- as simple as that, (& thankfully in most cases that happens as assumed); but what happens if the definitive diagnosis is not forthcoming?
From my experience, I can tell you that in this situation you begin to just want answers- good or bad, relieving or disappointing- you just want cold hard facts!
Living in this frustrating limbo leaves you unable to define your existence within so many areas of your life & I believe that however strong & self assured your sense of character; when you are faced with difficult times, it is only natural to want to feel that you belong to a group of some kind, to somewhere that you can be understood & can identify with others.
Over the years as my mobility has decreased & I have had to use sticks one day, a wheelchair another, & be confined to bed another still, (yet crucially, not always neatly in that order), I have felt unable to identify with the carefree nature in which my friends were energetically still living their own lives, but also nowhere near as unfortunate as those whom I shared my hospital ward with.
During this time I experienced immense feelings of guilt that I was taking the time of nurses, consultants & physios, when the lady next to me was completely confined to her bed & couldn't do the walking on sticks to the bathroom that I could at the time. How could I class myself as disabled in these circumstances?
Although looking back, I can now see that I have been disabled & unable to enjoy the experiences that I used to live for, for a few years now; it is only recently that the realisation has set in that I am still me & the only way to start living again is to embrace my new life & it's associated challenges & rewards.
It's certainly fair to say that my situation has not been the most straightforward of transitions from able bodied to disabled, (there have been more than a couple of times that there has been hope that I may recover & return to a similar life to that of my own pre- 31st July 2006); but I believe that many people who become disabled after living an able bodied life, also take some time for the realisation & acceptance to kick in that their future will be lived with the companionship of disability. I've found that the key stage in moving forward along this rocky emotional path, is when you can stop mourning your past life & consequently learn to embrace a new way of living. People have to remember that they can still give the world something amazing of themselves- it may be fair to say that this is probably something different to that which they would have done before this change in their lives, but it will be something unique & amazing all the same!
Seeing the achievements of some of the people that of done just this & have overcome adversity & inspired so many; it often leads me to question- do things perhaps happen for a reason at times?
I have often wondered if my husband Garry & I had known the magnitude & length of the road that we would be travelling along; would we have made it through to this point intact? After all, Garry & I had only been together a mere six months when my accident took place & having never had to endure many responsibilities (outside of work that is), in life prior to my accident- would the magnitude of my diagnosis of a degenerative disease, (that I may be about to receive in less than three & a half minutes time by the hospital reception clock), have destroyed us if we had received it sooner in our transition?
I personally believe that things probably do sometimes happen for a reason, (that is often not clear to us at the time), & that it probably would have, but we will never know- hindsight is a wonderful, if a little frustrating a thing at times!
Well here goes nothing. I’m off into the consultation room once again to look for those impossible words to describe my incredible pain. I’ll see you on the other side….
Well, it’s 14.25pm on 14th  June ‘11, & I have it here in black & white- I have the neurological condition Arachnoiditis.
This time I have answers. I can now move on with my life & embrace the fortune that has been decided upon for me.
I can finally answer friends & well wishers when they ask my husband or I that fateful question of– ''so what exactly is wrong with you? Why aren't you getting better?''.
I have Arachnoiditis. It’s amazing what those three words of bad news can mean.
To me, they mean that it’s time to move on from my limbo & get making the most of a life with a disability.
It’s not a pleasant & promising diagnosis; it’s degenerative & incurable, but it’s my diagnosis- which when you have waited five years, (1795 days) for answers, feels strangely wonderful! Controversial maybe, but if you can relate to similar circumstances & are being completely honest with yourself, I’m sure that I’m not the only one of us out there feeling this! After all, the injuries to my mind & the soul are just as, (if not more), difficult to deal with than the physical. If the emotional scars are eased & appeased, then I can vouch that it makes dealing with the physical pain that little easier.
This is life. Life’s messy, it’s vague, it’s grey, but it’s a hell of a lot easier when it is black & white & in your hand in 13 letters.
Arachnoiditis- I have that. Disabled- I’ll allow myself to be classed as that & join with others who can relate to my feelings. I belong. I have answers- now I can get living the best I can!
Away we go…..

I also tried taking today's piccie with Barley....

 .... but this was the consequence!
....What can I say; he has a taste for paper!


  1. I love you Mrs Reader your a real inspiration one of lifes one in a million people and I'm so proud to call you my friend!! Love always xxxxx

  2. Lady Bottington14 July 2011 at 14:11

    As always, my darling Reader,another wonderful blog - and you know how much I empathise and understand your desire to confirm that diagnosis, however devastating. Of course you want to be able to move on, knowing, and continue with your life. Closure. Christie and I went out for a celebratory meal when she had her diagnosis confirmed!!! And yet if I mention to someone that she has just been diagnosed, they say 'Oh, I'm so sorry - how sad for you'. They don't see it from our point of view, that a diagnosis means we are not mad, I'm not a bad mother, and I'm not hallucinating! We can move forward and get the help we need, if it's needed. From their perspective, my daughter is just odd and different - yes, different and wonderful and talented and has the capability to change the world... Just as you are doing, my lovely, with you kindness in sharing your words and experiences... Love you. xxx