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Tuesday, 26 July 2011

A Perception of Pacing- Part Two


I recently attended a charity benefit where the guest speaker- an extremely inspirational young woman who had battled cancer & was left with a limb amputation, spoke of her hope & determination to complete the London Marathon.
Naturally the whole room gasped & wowed at the prospect of this brave young woman achieving such a feat. Sat there in my wheelchair that I knew, on that day, at that particular point of time; there was a possibility that if there were a fire, I'd be able to get out of & with sticks & assistance exit the building, (although would consequently pay an extremely painful & debilitating price); I felt hugely paranoid that those sat around me were thinking, ‘come on love, if she can do it with one leg, you can surely manage it’..
I spoke with my best friend who attended the benefit event with me, regarding the feelings of fraud that I felt & feel when I am with amputees, & paraplegics & others who can not walk without their chairs at all, & how I fear they must think of me.
There is a constant conflict inside of me, as I feel that if I can do something at a particular moment in time on this earth in my precious lifetime, then surely I should do it to the best of my ability. It is this positive mentality that I have been groomed to have, that I can now appreciate, (with the help of this dear friend), has been partly responsible for holding me back all of this time since the start of my transition into disability.
My situation being such that any movement aggravates & exacerbates my already inflamed Arachnoid membrane which surrounds my spinal cord, & therefore results in me being in huge amounts of neuropathic pain- so any exercise or therapy has been banned as a consequence.
Even sitting in my wheelchair for long periods, results in hideous, unbearable pain, which consequently affects my mood & therefore my relationship with my loved ones around me, as I battle with the incessant constant pain & the grogginess from analgesia.
Changing a mind set that has been trained over years to do everything I can to my best ability & to always fight as hard as I can- is quite a challenge indeed. Known to those around me by my success in both the fields of professional dance & competitive athletics in my younger days; when I had my car crash & subsequent spinal operation, friends & well wishers were so quick to reassure me that with my personality & inherit determination I would surely recover in no time. Naturally, I appreciate that there was nothing but good intentions here; but when you are not in your right mind, (either through medication side effects or depression as a result of your circumstances), you start to beat yourself up that maybe you aren't as strong as you'd always thought & start to fear that you're letting yourself & those around you down as a result.
The point that as usual I am rambling on to make, is that we are all so different in our circumstances & no two people with disabilities have identical hurdles to overcome, so to presume otherwise would be foolish.
Disability manifests itself in so many ways, & is not always simply that that somebody needs to use a wheelchair as is so often naively perceived- even then those people in wheelchairs do not all have paralysis, or any other condition that prevents them from being able to leave their wheelchair completely.
An extremely controversial, (& perhaps very naive), thought that I have only ever felt able to express to my husband, parents & best friend is that I sometimes wish that my surgery had resulted in paralysis, (as was feared by my surgeon), instead of my disability of chronic pain caused by damaged nerves that is coupled with the onset of Arachnoiditis, a degenerative neurological condition much like MS that will eat away at my mobility & nervous system further over time.
The reason why I have this bizarre wish, is that I have always been a sports lover & an avid traveller; achieving awards in dance, horse riding, gymnastics & athletics in my youth, before joining Virgin Atlantic as an air hostess in my early twenties & finding a love for snowboarding & surfing & other high octane extreme sports.
What I long for is the ability to do these things, even if it must now be in a slightly different way. Thanks to wonderful developments, there is such wonderful opportunities for disabled horse riding & snowboarding etc., which is just wonderful for those people who are able to do them, but as my disability is governed by the debilitating issue of chronic pain, & I pay a price for everything I do, (even sitting in my wheelchair for an hour leaves me needing to lie on my bed dosed up on morphine as a result), the prospect of these wonderful opportunities is a complete non starter for me & others in similar situations. As these doors are shut in my face, it almost feels like a disability within a disability at times.
I often day dream that if I had become paralysed, I could do all of these wonderful activities as well as compete in sports again & wheel the London marathon, (a goal I had always dreamed of in my ‘former’ life!).
I could travel around the world & have the independence I dream of & not have to rely on my husband & bed as I do now!
Before I have an out cry from those who are paralysed or have had amputations that don’t result in constant chronic pain – I implore that this is just a declaration of my day dreams & my personal thoughts & dreams & I am by NO way saying that you have it easier than those with the disability of chronic pain!
There should NEVER be any comparisons made between any disabilities.
I appreciate as much as is possible without living through your experiences that your lives have their own issues & you no doubt wish that you could just get out of bed & walk to the loo on sticks like I can at times- this is purely a frank & possibly foolish very open expression from my heart.
The point of today’s post is to highlight to those without disabilities that we should not be compared & questioned why we are not achieving the same goals as those climbing mountains & completing marathons- we all have very different physical limitations.
I wrote today’s post as I am always being told- ‘why don’t you get your life back & do the things you loved before such as horse riding, snowboarding & surfing- they do these things for disabled people now don’t you know?’.
It is most definitely NOT because I don’t want to do these things, but because my personal disability means that I just can’t.
Do not presume that because two people are sat in wheelchairs, that their physical limits are the same. Never compare us; like we were before we became disabled, we are all different with different restrictions.
I will never stop pushing for more- that is just my nature & however much I try, as yet I can not get rid of that streak ingrained in me. What I must realise is that living a LIFE with my husband again is my primary goal, which must come before personal selfish quests for the satisfaction that I can still do things from my old life.
Pacing is paramount- I’m learning this day by day & yes, I am certainly by no means an expert; but I’ll keep you informed on how I go on my quest to apply this to my daily life. Wish me luck- I wish the same to you if you are practising the art of pacing yourself!

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