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Thursday, 13 September 2012

Pain Revisited!

Hi all, I hope that you are as well as can be expected and that life is treating you kindly.

Life in my neck of the woods, is rather hectic at present, with ever growing interest in the 'Get a Life!, I am doing my best to keep up with the fast increasing paperwork!

Due to the above, tonight is somewhat of a cop-out in terms of new material I'm afraid.

I saw on my personal Facebook news feed today whilst multi-tasking and whizzing the dog around the park at full speed in an attempt to get back to my calls and emails- someone post a link to a FB page highlighting 'National Chronic Pain Awareness Week'.

With a mixture of elation that such a silent and debilitating condition ( covering MS, CFS, ME, Arachnoiditis, Arthritis, Nerve Damage and many, many more!!)- and disgust at myself that I wasn't aware of this fantastic project, I hastily began searching the internet for more details of the above, only to find to admit defeat after 20 minutes of searching no avail.

Although sadly finding no record of such a week in this country, (PLEASE do correct me if I'm wrong!), and with a work load already looking likely to keep me up until past 3am, I decided that it has been such a long time since I had highlighted this much ignored invisible condition and re-post one of my first posts on this debilitating condition.

With such little understood and so much underestimated about pain as a disability, I have no qualms in doing my bit to highlight it- with the added bonus that this also frees me up to the possibly of making it to be before 2.30am!

So without further ado, I reintroduce you to....

Pain- The Invisible Disability 

( First posted 4/7/2011)

Having been completely overwhelmed by the unprecedented response to my first post, I wanted this my second, to focus on thanking those of you who have decided to embark upon my journey of discovering disability with me. I also wanted to take this opportunity to share with you some of the fascinating messages that I have received from those of you also living with disability: however, as is so often the case since I became disabled, my best laid plans have been thwarted by my despicable & debilitating nemesis- PAIN.
It’s 4.44am & pain is at my door today.
Pain is the dictator of my life.
Pain is vile; words just cannot express how much this is so.
Pain comes along & sucks the life out of my day.
Pain confines me to bed. Bed is my prison today. I resent my bed.
I want to use the pain for good- how on Earth am I to do this?
My initial response to today’s arrival of pain was to try & slip into my usual denial that it was even there at all. Ready to regale to you tales of more light hearted elements of life in my chair; (such as my recent argument between my wheelchair & a nappy changing unit- the changing unit won I’m afraid to say!): I promptly reminded myself that the whole point of this blog is that it should be an honest & frank portrayal of life with a disability. To be true to this quest- here is my real response to today’s attack by pain…
Having recently acquired the keys to my life again, (as a result of receiving a better morphine regime); a mistake in my medication yesterday has sent my pain levels soaring into uncontrollable heights. These are the heights in which until recently I was living daily, confined to my bed, my prison, my hell.
What I’d like the positive spin on today’s unpleasant experience to be, is that those who are also experiencing this torment may feel less isolated & that those who’ve never experienced this pain may learn a little of what it does to you when it comes to play for the day.
I’m sure many of you are asking why? Why is there a need to share with others the diabolical nature of your pain? Lets face it, life is full of too many personal difficulties as it is; we all have our own crosses to bare. What is the point in sharing something so lacking in positivity?
 I vehemently believe that I should share this with you as chronic pain is simply not recognised enough. Pain is the silent & invisible disability. Unlike amputation, birth defects or wheelchair dependency; chronic pain is not visible to those around you & therefore in my opinion, is just not given the respect it so deserves.
Nobody wants to moan or whinge, or demand attention from others; but when you are suffering this much pain there is a part of you that does just simply want to shout from the roof tops- ‘this pain is destroying me. This pain sucks out any sense of me! This pain makes me want to do the unthinkable at times’.
Not comfortable reading I know & part of me is sorry for that: however, the part of me that worries myself sick that friends must get so irritated when I can’t make that drink; or that I must have been perceived as grumpy & aloof at that work dinner of my husband’s as I was silently battling with my debilitating demon; isn’t sorry & just wants the world to understand & relate to those with chronic pain.
Chronic pain can be caused by illness as well as injury & is seldom talked about in the mainstream media. I believe this is because it is not easy to quantify & describe.
Chronic pain is extremely isolating: few express their emotions pertaining to it, partly as we all too often opt for that British, stiff upper lip & stoic manner, & partly because the general feelings that the situation evoke are not positive, happy, fluffy & easy to express.
I’d really like to challenge our perception of pain so that others in a similar situation to me may feel slightly less lonely when they have a day such as mine today.
 It is a common misconception that chronic pain may be eased by social interaction & distraction. This may be true at some levels of pain, but I feel it imperative to point out that the days when chronic pain reaches unbearable heights, one is usually confined to bed as a result & does not just have pain because they’re feeling lazy & would like some time chilling out with that CSI box set that has just arrived from Amazon!
I all too often receive this well meant sentiment & although much appreciated, it really does frustrate me-
‘You’re feeling better today because you’re out & about love- I know it. Being in that bed of yours can’t help you’.
…Of course it doesn’t help; nobody at 28 years old wants to be confined to bed for months on end, missing dear friends’ weddings, christenings & hours of need. Being confined to bed by pain is not a life choice but a necessity.
Indeed there are links to cognitive behavioural therapy & depression having affects on one’s ability to cope with pain; but the message that I want to convey to you today, is that pain is not caused by feeling down- I am down today as a result of my chronic pain.
If you are experiencing chronic pain today then I pray that you may find something to ease the incessant hell. If you have never experienced chronic pain then I pray that you never will. I also hope that from hearing a snippet of a day lived with chronic pain, that you may now be blessed with more of an understanding of those around you who may be living with it, yet perhaps are desperately trying to conceal it from you.
Stay safe everyone. Until the next time….