It’s my PN anniversary, eight years (if I don’t subtract the 4.5 years it took me to find out it was in fact PN)! Obviously time brings on reflection which in turn [...]
Permission granted and now it's back to reality! Or is it possible I never really left my reality? As if anyone can leave chronic pain behind and really have time off! I'm going to post my brain's two conflicting versions: 1. Crap thinking out-of-the-way first version..
Or should I say, looking forward to 2015? Looking forward is more my tune but the changeover of another year, especially with chronic pain, calls me to reflect and to ponder my [...]
Very chuffed to be selected as a semi finalist regardless of the outcome. The portrait was flown up to Sydney for a second round of judging. She didn't make the final cut of 30 finalists but I feel so content that Ms Soula is going to great lengths to create awareness for invisible pain.
Collage has been a little more therapeutic for me than my usual art forms. I think it must have been finding a technique that I could manage and one that didn't add to the fatigue and pain. Cutting small pieces of paper and glueing, drawing, attaching was just so light and easy. The painting of small pieces of paper and the careful ripping and tearing was like rocking. So gentle, so calming and at the same time feeling like I was handling my pain, expressing it and getting it out of my body and onto the art piece.
In Art and Chronic Pain – A Self Portrait, artist Soula Mantalvanos shares her experience with chronic pain, which has been a debilitating presence in her life for almost seven years. Soula suffers from Pudendal Neuralgia, a painful nerve condition that developed following an accident where a fit ball that she was sitting on burst, causing her to drop violently to the concrete floor beneath. Early on in the book Soula describes that split-second, and the devastating effects that followed. A highly active yoga-loving woman before the accident, throughout the book Soula gives a deeply personal account of the psychological, emotional and physical impacts of living with chronic pain for so many years. These negative effects were compounded by the fact that her condition Pudendal Neuralgia baffled her doctors, and took four and a half years to even diagnose.
When I hear 'festive cheer' I can't help but rhyme it with 'Festive fear', are you terrified at this time of year? Festivities call us to get out of the safe daily zone, step into marathon entertaining, baking, wrapping, socialising, a time to move away from our therapists and their treatments (Lord knows they need a break!) and jump! It's impossible not to wonder, how will this end for my pelvis?
Tell us about your history and how you ended up in the position of being an amazing woman advocating for chronic pain? “I was working in our graphic design studio, Origin of Image (ooi.com.au) in March 2007. I was always health conscious so aside from my yoga ritual 4 mornings a week and walking everywhere, I would often sit on a fitball. It was great until the antiburst fitball burst and I fell to the concrete floor. It really was the split second that changed my life. I was 37. I think what tipped me into advocacy was the 4.5 years it took to find a diagnosis and the near miss I had with living out the rest of my life in horrific pain levels if I’d not investigated further. My chronic pelvic pain is more specifically known as Pudendal Neuralgia (PN) or Pudendal Nerve Entrapment (PNE). This is more simply put as Carpal Tunnel in the pelvis. Where Carpal Tunnel affects the hand signals and hand movements, Pudendal Neuralgia affects our biggest pelvic nerve which controls toilet and sexual signals and functions. The pudendal nerve runs under pelvic ligaments and muscles and is attached to nerve roots in the lumbosacral spine so it can be disabling. It feels like that core part of my body has a toothache or as if I have my finger stuck in a powerpoint. BUT, I’m happy to say I’m in a much better place now and that’s why I want to share my story. I believe if I was diagnosed within 6 months of my injury, I would not have this issue now and that makes me want to reach everyone with undiagnosed pain that may be suffering from PN. I’ve also been drawn to advocacy for injured workers since I’ve now had first hand experience with the WorkCover system and its limitations for understanding, assessing and treating chronic pain. In fact my chronic pain issue was not assessable for compensation. Its score was rated at 0% impairment. I’ve also submitted many complaints and questions to WorkSafe and associated organisations, I’m making a heap of noise on social media and gathering a great group of people in the hope of making a change. A network exists now, encouraging other injured workers to speak up, forming communities for support where there were none previously. Injured workers can now vent, speak up, be heard. Social media has provided a voice and is our legs (even when we physically can’t move). So in the process of advocating for PN/PNE the biggest tasks are to change the judgment and misunderstanding of ‘pain’, and misconceptions of the term ‘injured worker’.”
Yes, I've found another medium to express my pain and you can own your own copy of it! I didn't like the idea of creating a long description of my living [...]
Communicating pain... Absolutely gobsmacked at this achievement, and incredibly confused at the same time. Who would have thought a horrifying life changing event could bring so much reward. Nevertheless, I’m going with [...]
