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Monday, 4 July 2011

Chronic Pain- The Invisible Disability

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….
Today’s reason to smile 4th July 2011-
Is this wonderfully lighthearted & uplifting video shown to me by my husband. Those of you with dogs; have you ever wondered how they may sound & what they may say if they could speak? Take a look at this. http://www.youtube.com/watch?v=nGeKSiCQkPw
Happy 4th July 2011 everyone; enjoy it the best that you are able to.











3 comments:

  1. Karen your blog is heart wrenching mainly I think because of the raw honesty with which you describe your unimaginably awful pain. Your style is not flowery or flouncy, just honest and simple and that is what gives it such power.

    My heart goes out to you and I really hope we can meet up again soon.

    gill xx

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  2. How true that pain is invisible. Neither do you get the sympathy that pain events like childbirth or a broken arm receive. You don't even get your own parking space at Tescos ! Reading that entry, I'm left feeling helpless and I wonder what, if anything, anyone can do for you or anyone who experiences that kind of chronic pain ? A typical male response, trying to solve the problem, but what do you think ? Maybe more CSI box sets ? ;-)

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  3. hi, i like u have had years of a wonderful life, dancing, horse riding and doing everything a girl would want. i have an illness called Ehlers danlos syndrome, its aconnective tissur=edisorder which causes constant dislocations, chronic pain, arthritis, gastro probs, internal bleeding and so much more.i was born with it and had a few probs as a child but falling pregnant set it off on full roll. for the last 7 years ive gone from being ok to being in a wheelchair most of the time and being in constant agony. its so hard not to get frustrated over the things i could do. chronic pain is like a black cloud constantly over you thatno one else can see.being told "wellu coulddo it yesterday"is the most common comment i get.people do think ur lazy and that hurts as im not a lazy person. there is so many things i want to do even like being able to hoover the whole flat in one go without having to stop as the exhaustion and pain are making me feel so sick and dizzy. i am lucky enough to have a wonderful partner who does his best for me but like ben (above) feels helpless. unfortunatly chronic pain makes me and probably all of us grumpy and depressed. the only thing anyone can do is just understand and dont take it personally. remember that people like me will always try to smile and be ok, just cause we look it doesnt mean we are.if i didnt have the supoport of my partner, family and my 3 beautiful dogs i would be totally broken. karen, ur an amazing woman, ur posts inspire4 me and remind me that there is somone else out there with the same black cloud, im 27 so knowing someone is also at the same stage in life as me really helps... thank you for drawing attention to ur life and disability i just hope that more people can start to understand what we go through. reading ur posts are part of my medicine-thank you claire xxxx

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