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My_Space, My facade, living with Pudendal Neuralgia

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Sunday Style My SpaceWe don’t usually love media, but a little attention after some lengthy hibernation from work was bound to be very valuable for our (Theo’s and my) 12 or so year old business, Origin of Image. The lovely Sunday Style (Herald Sun) offered an interview in their ‘My_Space’ feature… hmmm, quite funny for us as there’s nothing ‘my’ about ‘our’ life. We share work, living, we even share Pudendal Neuralgia (PN).

However this media attention and the snap of me in Sunday’s weekend paper had me staring at my portrait (thank you Marija Ivkovic) with curiousity at that captured second of my able life. I looked incredibly independent, active, like I was working full-time and like the issue I confessed to was clearly easy to live with.

We are all judged on our facade… and although it was stated in the article that I have PN, I often wonder: can it (or any other invisible issue) ever be understood by my friends, family or community at a glance? The answer is obviously ‘no’. I myself battle to understand this conflicting issue with its high sensitivity, on/off maddening, screaming and confusing signals and failing functions, and that’s no surprise because even I can’t see it! Theo puts it well, “I can’t understand Pudendal Neuralgia but I believe Soula”.

For the split second of the portrait though, (goodness, even I keep looking at it quite enjoying the scene), I’m sitting on my non sore side and my wrist is about to snap because all my weight is pressing on it. Regardless, I allow myself to dream that everything is exactly as it seems in the picture… 24/7.  I get to dream for just another second before my pelvis reminds me that the hard working, happy snap is instead made up of Theo’s daily help, my limited activity, the Peripheral Stimulation device, nerve blocks, medication, remedial massage, traditional Chinese herbs and now, an adjusted home to suit… (I won’t go into the ‘I don’t, I can’t, I avoid, I won’t’ activities).

(Let me clear my throat)… And now that I’ve posted my whinge, I’ll go back and have another look at my happy portrait snap of ‘our space’. This time I’m grateful that I even have an able facade, one that others can think is O.K. and oozes full time work… even if it takes the both of us and an invisible premium pain package

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  • Mark S.B.

    Soula,
    The way somebody appears on the surface, especially when that appearance is hard to deal with and really not meant to deceive , your art work is a extension of your ability to see through the pain and it shows in your work. I have nothing to show for my 57 years on this earth, but I try my best treat people with compassion with this invisible illness called chronic pain. Its so much more than just the words chronic pain.

    • Soula Mantalvanos

      You will have something to leave behind Mark, a stream of supportive and empathic comments all over the web. Your support and words are wonderful. Thank you.

  • John Quintner

    Soula, you have also exposed the facade erected by WorkCover – one that effectively hides the lack of fairness in the assessment of injured people who are physically and mentally disabled by ongoing pain. By a sleight of hand they have re-badged “disability” as “impairment” so that doctors can assess those with mental conditions but have consistently denied people like you from undergoing a similar assessment.

    • Soula Mantalvanos

      Thank you John. It’s a shame the system is so poorly put together in this respect. Assessments and diagnosis are such a crucial part of coping and repair. I still can’t believe the narrow mindedness of the WorkCover system and the unprofessional way it works (pardon the pun). Our Government should be ashamed. I’m so lucky to have a supportive partner otherwise living alone I would have had no hope of finding treatment, affording it, coping, etc etc. I hate to imagine how many injured workers there are out there dumped and without their entitlements.

  • Soula Mantalvanos

    i thought of you specifically when i was writing this Vanessa. The second and the facade that flashed in my head was you and that gorgeous smile of yours. You get it, you’re living it and I love that you take the time to support others going through the same thing. Such a divine comment. xxxx

  • Vanessa

    oh yes the beautiful facade- so easy to project anything- most reading this article would envy your life- the artistic side, the cool house, groovy decorating…but they look at you and see your gorgeous smile and think how you ‘have it all’….but only a few know the ‘real’ life of Soula…one of pain and grieving over lost abilities…no one would want that…but as you say- you can look at the article and believe your facade yourself! Never hurts to dream 🙂 Great piece about the article- well expressed and easily understood by those of us on the same journey xx

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Definitions of pain

What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggravated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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