Wednesday 8 November 2017

LIVING ON THE EDGE.



Spoonies!  I don't really get the metaphor.  I understand the point and the concept but for me personally, I just don't get it.  The Spoon Theory, an essay written by Christine Miserandino in 2003, visualises the energy used by people with chronic illnesses by equating daily tasks with a number of spoons.  You start the day with a certain number of spoons and then if you run out of them, you just have to wait until your stock is replenished.  Like I said, I just don't get it.

Here is the link for more information for those of you who want to read more about the theory.

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I'm a spoonie!  Not only do I have a chronic illness, but it's also an invisible illness.  That means that people can look at me without realising that anything is even wrong and they do!  People may not realise it, but they judge and make assumptions about people even if they don't realise it.  Let me explain, if you're sitting on a bus and an elderly person gets on or a pregnant lady or a person with visual aids i.e. walking sticks; crutches; blind cane; assistant dog etc., then there's a good chance that you would offer that person your seat but if I get on a bus, walking unaided with no visual disability then you make the assumption that I'm perfectly fine.  You jump to the conclusion that I don't need/deserve any additional assistance.  You pre-judge my health and conclude that my body isn't attacking itself from the inside out, that I don't suffer symptoms from my head to my toes due to either one of my several autoimmune diseases or the equally-as-difficult medication that I have to take to try and control it.



I'm constantly on the edge, I don't fit the classifications to be disabled yet I have a disability.  I look normal on the outside while my inside self-destructs, I'm capable of working but I'm not able to do certain jobs/tasks but most of all, I'm constantly on the edge of an emotional outburst due to thoughtless, inconsiderate and judgemental people.

Now don't get me wrong, I don't expect anyone to be psychic and I don't go around sporting a neon ‘spoonie' badge but I just get frustrated with how little understood chronic/invisible illnesses are and how difficult they are to live with.  I mean, how many of you have ever tried using a disabled toilet when you're unaided? The looks, stares and judgements I get is like I've just asked for their firstborn child!



And if the diseases aren't bad enough, the medication is surely the work of some deranged professor with a twisted personality!  Chemo drugs, abortion pills, steroids, biologics (be careful they may cause cancer!) And a whole host of other man-made evilness each with their own anti-side-effect side kick!

I'm frustrated!  I'm sick and tired of being sick and tired!  I'm annoyed with drugging myself with God-knows-what to be able to function even remotely normally.  And I know, I'm lucky that as yet my illnesses are progressing slowly and are 70% under control most of the time but at the back of my head, I'm always waiting.  Waiting for a flare, waiting for the day when my body rebels, when the medication stops working, waiting for a new disease to mutate from the existing ones.

I can't plan, I can't relax, I can't anticipate because I live on the edge – of knowing and not knowing, of living and existing, of ok and bedridden and I hate that.  I hate the power and control that my body has over me and I hate not knowing what tomorrow will bring and when the day will come when my diseases control me and not the other way round.

Thursday 17 August 2017

Breathing words.

In a world full of chaos, confusion and uncertainty, there is nothing like the sharp, definitive blackness of comic sans to bring me into focus (other fonts are available ;) ).  I have always had a soft spot for words, vocabulary and expression via the written word but that soft spot has slowly and uncontrollably snowballed into a need, a desire, a passion!

Whenever I sit and think about where my life is heading - and at the tender age of 34 I still haven't discovered where that is - I become so overwhelmed with words and thoughts that it's impossible for me to ignore or dismiss.  They are there, like it or not, bubbling over in my brain, breeding and multiplying like the proverbial rabbit, my hand subconsciously itching to expel them onto whatever medium is available.  It's a need!  Not a choice but a tsunami of vocabulary spilling forth onto paper or screen or a napkin I have to hand.  And as much as I enjoy these creative eruptions, it's the profound sense of peace, clarity and organisation that follows which truly shows me that this passion is a gift, a natural birth right, a DNA sourced gene that is a building block of who, and what, I am.

Isaac Asimov has been quoted as saying, "Writing, to me, is simply thinking through my fingers", and I agree with this wholeheartedly, as well as Wordsworth's quote instructing, "Fill your paper with the breathings of your heart".  Is there any truer concept for a writer than that their writing is borne of an unstoppable binding of heart, mind and soul that simply has to be expelled?

And how do I hone this passion?  How can I perfect and indulge and feed this God-given part of me?  By consuming the very thing I want to produce.  Surrounding myself with the work of those who learned before me and those that learn alongside me. By absorbing the written word in as many forms as possible and by letting the passion of others always be a fuel to my fire. I just have to remember to always stoke the flames.  :)

"Throughout human history, our greatest leaders and thinkers have used the power of words to transform our emotions, to enlist us in their causes, and to shape the course of destiny. Words can not only create emotions, they create actions. And from our actions flow the results of our lives".

Tony Robbins

Is there any worthier passion, than a passion with the power to change the world?


Tuesday 1 August 2017

Make Or Break.

Inspiration is everywhere.   In every breath - from the wonders of the intricacies of the human body at work - to the unexplainable workings of the little known universe.   As humans, we stand on a spinning rock, in the midst of mostly undiscovered nothingness, creating life from the most microscopic of cells, while searching for more than the invisible gas that sustains our very existence.

We time ourselves by a burning ball of gas that we magically orbit while relying on a distant rock that magically orbits us.  Do we need more inspiration than that?  Than our very own existence and life?  It appears so, because for all the wondrous, unexplainable occurrences that give and sustain our lives, we always want more.

For me personally, inspiration comes in the form of successes and failures.   Personal successes show me that I can achieve things given the right set of circumstances.  They inspire me to create those circumstances in order to achieve greater things more often.

The success of others shows me that there are no obstacles too big, no worthy excuses, there are no limits except the limits that I set for myself! They inspire me to think bigger, try harder, go further and never be afraid to veer off a used path or think differently.

Success, to me, inspires me to gain perspective, believe in myself and my capabilities and to celebrate achievement no matter how small!

Failure! Eugh, how I hate that word and it's very existence! But unfortunately, failure is part of life and you can either let it defeat and define you or, you can let it build and strengthen you!

Failure is my greatest inspiration because it teaches me that I can't quit. That giving up isn't an option because my failure has already lead me closer to my success.  That the journey to achievement is equally as important as the achievement itself.  I learn so much about myself from my failures that I know I couldn't ever have succeeded without those lessons first.

Failures remind me that I'm human and that anything worth having is worth striving and fighting for but more importantly, they remind me that I'm already more successful than those that never even tried!

Friday 21 July 2017

FOOD FOR THOUGHT.


If you're going out to eat but you don't like the menu options, do you still go there to eat anyway or do you decide to find something better/ more suitable for you to enjoy your evening? If you do decide to eat there anyway, if you are unhappy with the food, quality or service, do you ignore it and continue to waste your time and money on something so unsatisfactory or do you complain and demand replacements, refunds, exchanges? Do you continue to visit the same establishment based on your previous poor experience or do you avoid it and tell your friends to do the same?
Why is it that we seem so much more concerned about minor things such as eating out than we are about our lives? Why will we turn away from a restaurant because we don't like what we see, yet we continue on a path in life that is equally as unappealing? Why do we fight for our rights as a paying customer when we are unhappy with our service/experience yet we don't fight for our own success and happiness and opportunities in life which cost us dearly in time? Why do we always prioritise the small picture when the big picture is the most important? Why does fighting for our future and livelihood seem such an unimportant, overwhelming or impossible task that it takes a back-seat to the minor and insignificant moments that we use as mirages in our arid existences?
Don't get me wrong, the little things and moments are important and meaningful and they can create a wealth of cherished memories and a valuable and enriched life but they need to be interlinked with your life on a larger scale. They need to embellish your life, not create it.
If you don't like the look of your life right now, then don't keep going forward with it, change it. If you're not happy with a situation or position that you're in now,  then fight your way out of it.  You have a right to be happy, a right to success, a right to achieve, a right to want something different, something better and most importantly a right to believe in yourself, want for yourself and try for yourself.  No one will fight for you the way that you can and no one can inspire you if you don't want to be motivated and encouraged.
Stop settling for less than you want, less than you're happy with and less than you deserve. Fight for yourself, fight for your life, fight for your future and fight for your happiness. Love yourself, you deserve it! 😁