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Thursday, 28 July 2011

Reasons to Smile- Treasuring Travelling

The thing that has made me smile today is the fact that I am sat here this evening in a hotel room by myself, as Garry has had to return home for a day from our short break away, due to work commitments.
My happiness in being here alone is most definitely not because Garry & I have had a ''bust up' or anything, but because I am away from home alone for one of the first times in five years, & as a result have a surge of energy & excitement running through my body like epectricity! INDEPENDENCE is a word that has become quite alien in my life, but one that I feel excited about getting steadily reacquainted with!
This back to basics chain hotel off of junction 14 of the M4, may be a far cry from the luxury that I became accustomed to during my time as a trolley dolly, (cabin crew member for Virgin Atlantic if you want to be pedantic!)- but in a strange way I have found tonight’s experience even more uplifting & exciting as my independence is obviously much more precious today, than that of my days of gallivanting around the world courtesy of Mr Branson.
I remember fondly receiving my first rota after my six weeks training for Virgin Atlantic; giggling like a mad woman with my friend as we hastily ripped open the envelopes, I squealed with delight as I read the three letters of LAX indicating that my very first flight as a ‘Hostie’ would be to the bright lights of Los Angeles!
As the weeks went by & I proceeded to see the codes of BGI, (Barbados), HKG, (Hong Kong) & JFK, (New York), appearing on my rosta- my friend & I made a pact to never ever become complaisant about the phenomenal destinations that we would be visiting as part of our ‘job’!
Life being life, & me being someone with nothing in my life to give me the perspective that I now posses about things- however much we tried to uphold our pledge, my friends & I soon began slipping into those Hostie bad habits of complaining about getting rrostered on a four night trip to St Lucia because it was going to clash with a party back home. Utterly ridiculous upon reflection I know, but when jetting off to New York becomes a regular occurrence you soon lose all sense of perspective!.
I literally had the world at my finger tips & even got paid for the privilege, & did I appreciate it as much as I should have done- nope, I bloody well didn’t!
With that wonderful gift of hindsight, I look back on that old slim, able-bodied, newly romantically involved me & want to shout & shake her & worn her what lies so closely around the corner & that she should treasure each minute of each day, as even a stay in a glorified motel will feel like a trip to Tobago in a few years time!
We are all human & we will never appreciate to the full extent that they should be, things until we lose them- however, if my experiences & the experiences of those people who write into ‘Discover Disability’, can shift the perspective of others even a little- then surely some good can be obtained from what is perceived by those around me as a negative situation.
As I take each step along my path of embracing my new life, I can actually see the wonderfully positive things that have blossomed from this negativity. There is no doubt that each day is so much more precious to me now than it was pre- July 2006. Let’s face it, if you can perceive staying a night in a well known basic hotel chain as an exciting adventure, then you know that you are seeing things through pretty rose tinted glasses!
Put on your own floral tinted specs & try & see life as the hugely valuable commodity that it is.
Each experience in life is so incredibly precious, so do your best to see it as so today & every day.
Today, the thing that is making me smile is my independence & the simple pleasure of sitting in a hotel room alone, away from the usual prison of my flat or my bedroom! What are you valuing & feeling grateful for today? Please post on the comments section below or on our Facebook page at... http://www.facebook.com/home.php#!/pages/Discover-Disability/199650300082847

 Travelling in times gone by...

Wednesday, 27 July 2011

Reason to Smile- Alex's Story

Since I have started writing these daily Reasons to Smile posts, I have been blessed with many emails from friends & family with suggestions for the day's content.
Today's Reason to Smile, is one of these said suggestions & came from a very wonderful lady, who happens to be a friend of the best friend of the incredible young man who is the subject of this film.
I'm not going to lie to you; you will really struggle to watch this film without shedding a tear or ten, but please do not let that put you off- this is a wonderfully made documentary about a truly wonderful individual & his inspiring life.
The positivity & joy that this amazingly strong guy exudes on this film, has stayed with me for the last twenty four hours since I watched this film, & strangely outways the feeling of sadness that is naturally going to be felt when dealing with a topic of this nature. I simply can not get the spirit of this magnificent man out of my head- an incredible, incredible.guy & also a fantastic support network of friends & family.
The wonderful story, of the wonderful life of Alex Lewis is what is making me smile today.
Focus on the great things in your life; every day is so incredibly precious!

Please, please take an hour out of your week to check out this video...

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!

Monday, 25 July 2011

A Perception of Pacing- Part One…

Since my spinal surgery three years ago, I often feel like I do nothing but fight & try my best every day to stay strong- a feat which when you have had to face the physical & emotional hurdles that have been presented unto me of late; is a pretty draining task indeed.
Reflecting upon this point the other day, it struck me to question- what really is being strong at the end of the day anyway? Perhaps my definition has been a little off the mark, as I’ve been perceiving it as desperately trying to achieve significant goals; but again what really is achieving a goal?
When it comes to this question, I have been pondering for a while whether doing ‘normal’ things, such as managing to make it to a friend's wedding, or to wheel with my husband & dog along the river on a Sunday afternoon, is achieving goals; or perhaps achieving goals is actually realising larger tasks, such as cleaning my flat from top to bottom by myself, or walking a significant few steps on my sticks to show that I can still physically 'acheive' something, in my mind- the result of this maybe that I have to stay in bed for days, weeks or months as a result; but that’s all part of the price of suffering with pain & injury, isn’t it?
Perhaps achieving my goals is simply doing mundane tasks such as managing to get up & go to bed at a normal time- perhaps requiring an afternoon nap in between, but nonetheless managing to do this 5 days in seven maybe? Is that a reasonable goal. or is that a complete non-event?
Up until now, I would have absolutely said that only the more significant events were the definitions of accomplishments; but I am being encouraged of late by friends & family, that maybe the later is more appropriate & conducive to having & sustaining a life for myself & importantly for myself & my husband?
For the last five years or so, I have been told by nurses, doctors, physios & surgeons that I really don’t know how to pace myself & as a consequence have a habit of  pushing myself to achieve self imposed goals & really overdoing things as a result. In fairness, I’ve admitted more recently that they’re right, & that maybe I don’t quite have the right balance of rest & 'having a life', but my response is always to ask with frustration in return- 'well what is right balance exactly? Please tell me & I will gladly oblige'; but as an inaccurate science that is hard to quantify, no medical professional has as yet been able to help!
The wannabe high achiever in me says that surely it is better to have greater more impressive goals & achievements, (such as those which we so often hear about in the media- climbing mountains & running marathons with amputations), & pay the price of bed rest following: than to live a mundane uneventful life where I may be able to sustain a level of living that does not need huge recovery following activity.
Controversially, I sometimes feel frustrated by these wonderful & unequivocally admirable feats that are portrayed to us in our media.The reason why, is because I feel that we never hear the full story & only ever hear solely of the sensational events that have raised amazing amounts for amazing charities.
The story that I feel is not being told is the price that is being paid by these events subsequently & what sacrifice to one’s marriage or family life these events can have.
Having tried to push myself to achieve significantly smaller goals than these, (but challenges to me nonetheless), I have realised with my personal circumstances, just how much of a toll these things can take.
I have experienced the annoyance & frustration & even resentment from my husband when I have had a pig headed drive to achieve a personal challenge- as a result he has suffered, as it has meant that I have had to be confined completely to bed for months on end, unable to have interaction or enjoy events with him & frankly unable to have a relationship with him at all.
I can therefore see on reflection, that at times I have been selfish & not considerate of my husband & family's needs in these circumstances of ours.
I am of course by no means belittling or criticising these amazing achievements by fellow persons with disabilities, (in fact I praise them for their extraordinary efforts); but I am simply trying to make people aware that because we are not all climbing Everest, does not mean we are not achieving in our own way.
This is a new concept for me, as until recently I have felt a failure for not being able to achieve a sensational challenge to raise funds for others & prove to those around me, (& more honestly myself), that I can still reach noticeable heights.
Having finally metaphorically removed my fingers from my ears when talking to friends & family, I’ve learnt that they actually do not want to see me reach these goals & subsequently have to remain in bed for months, but would much rather have me able to be involved in our family life & it’s small events, & live a quieter & more sustained existence simply as me.
Having spent my youth competing county wide in athletics in my former life, I’ve always been encouraged that I should achieve, push myself, win the gold & beat personal bests & as a professional dancer in training, I should always aim to be more flexible & get my kicks higher than anyone else in my class or audition.
When someone tells you to go against all of that which has become ingrained in you over the years & to under-do things, be average, be adequate, to not do things quite to your full ability & hold back on achieving things that you could achieve, but should not due to it’s physical price- you are trying to change mental & physical habits of a lifetime & turn them on their heads!
As a disabled person who suffers from chronic pain, these goals of making it to friends' birthday parties, or shuffling further than you have before in the house are hugely valuable- but what really is the value, if you end up in bed unable to have a relationship with your husband because you are so out of it on medication to fight the pain that has been caused by these ‘achievements’?
To be continued....

This subject is one that I have discovered I have a lot to share about. Please therefore bare with me & join me again tomorrow for the second part of this post.

Today the thing that has made me smile, is simply being able to get out & about & sit in the park in the sunshine for 'Pimms O'Clock', with my Barley Dog! The freedom associated with this action, is something  that I would never have dreamed I would be able to experience ten months or so ago, when I was completely confined to my bed.

So many things are so much more precious to me since my accident & subsequent disability. If you are able, please try & grasp a little of this perspective for yourself without having to experience something negative in your own life to get there.
Happy 25th July everyone. Value & savour those little things today & everyday!

Sunday, 24 July 2011

Reason to Smile- The Revelation of 'The Spoon Theory'

Happy Sunday 24th July everybody; I hope that yours has been a good one.

Today was a wonderful day, as I was lucky enough to be well enough to attend the birthday party of my beautiful God Daughter Alura Rose.
As the birthday girl merrily frolicked in the garden with her gang of perfectly content & significantly sugar hyped seven year olds- us ‘grown ups’, (consisting of myself, birthday lady’s parents & also her second God Mother & partner); celebrated the momentous day with a cheeky glass of vino in the little more tranquil sanctuary of the living room!
After the initial pleasantries & catch ups on how lives have been & changed since we last saw each other a year or two ago had passed; we began getting down to the nitty gritty of what had been getting our goat of late.
The very wonderful lady who I am proud to share my God- mothering duties with, is coincidentally also a wheelchair user, although one who has lived as such for many more years than I.
As we bantered around what would with many friends be awkward topics pertaining to our disability, fellow God Mummy jovially welcomed me into her world, as we then went on to discuss what a trying & frustrating world this can be for us & our families!

I am proud to state that I am extremely blessed on the friends & family front & am lucky to never be short of an ear to talk to should I simply need to vent- however, despite this blessing, today I experienced an increased freedom of expression in talking about my new found disability & lost all sense of my usual fears that I was boring my latest victim of ‘The Discover Disability Factor’, & that maybe I should be moving on to switching the subject back to the name of the latest baby Beckham, or something equalling as banal.
To talk to someone who is a veteran at putting up with the gripes that are driving me so mad at the moment; such as the shocking state of our transport systems from the perspective of those with disabilities- was just so refreshing for me & enlightening on many levels.

Although I was today in receipt of many amazing pearls of wisdom; the single most useful piece of information that I was given by this truly wonderful lady, was in relation to explaining to others how life is to us, as wheelchair users.
Never one to use one word when I can use a hundred, (as I’m sure you are beginning to realise by now), I have long set myself the challenge of finding a way to articulate how frustrating & challenging a day in the life of somebody with a disability can be; (without however ending up rivalling the likes of War & Peace in terms of volume of my message!).
…Enter the revelation of ‘The Spoon Theory’, which was paraphrased to me this afternoon by my amazing fellow God Mummy!
I often hear people speak of light bulb moments in their lives & on reflection this evening of today’s conversation, I feel it appropriate to say that such a thing occurred for me- not in terms of me thinking up a concept, but in one being shared to me that brilliantly expresses everything that I have spent five years trying to say to others!

However much I try, I will not be able to do justice the story of how ‘The Spoon Theory’, was conceptualised by Lupus sufferer Christine Miserandino in a diner in the U.S. over gravy & chips- so if you have a few minutes to read this wonderful ladies own words, I urge you to click on the link below….

If you share my frustrations in never feeling able to articulate eloquently the toll that disability has on you each day, I hope that this link will help you to have a ‘light bulb moment’, of your own & alternatively, if you do not have a disability, then do please still check out this link, as the more people who can take such a forward step in trying to understand the plight of those around them; the kinder the world will be for those having to live in the isolation of feeling that nobody understands!
I pray that tomorrow is as pain & difficulty free as is possible for you all.

Today the thing that has made me smile has been the discovery of, ‘The Spoon Theory’. Thank you so much Christine Miserandino for your wonderfully insightful & encouraging words.