February 15th, 2014 9:21 am

Myself, Ms Soula and my pelvic pain story at the Alliance for Improving the Management of Pain 2014

By |2022-05-17T10:33:44+10:00February 15th, 2014|Categories: Advocacy, Events|Tags: , , , |

HTML tutorial I would have had to be dead not to front up to an opportunity where I could present my pain journey to 180 chronic pain interested practitioners. Was I terrified? Absolutely! But as if chronic pain hasn't trained me for that, pushing me past all my boundaries and limits, and facing constant fears... this was going to be a piece of cake in comparison! The Alliance for Improving the Management of Pain 2014 (AIM Pain 2014) was held in Sydney and PainAustralia were searching for a patient to tell their story. My first thoughts were; I had to be able to tell my pelvic pain story through art, Ms Soula had to be on the stage with me, and I worried that this was impossible to physically manage without Theo's help. As it turned out all that was ok, in fact the organisers were most enthusiastic about the creative side, and the support for both Theo and I was 100%. I was asked to present my story as honest as possible and in my own words and pictures.

January 4th, 2014 9:31 am

Visual Pursuits book review on Art & Chronic Pain – A Self Portrait

By |2021-02-24T10:32:28+11:00January 4th, 2014|Categories: Advocacy, Creativity|Tags: , , , |

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.

November 14th, 2013 10:50 am

Soula Mantavanos…Inside her home and her passion to help others!

By |2017-12-12T11:30:13+11:00November 14th, 2013|Categories: Advocacy, Creativity, Online|Tags: , , |

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’.”

July 5th, 2013 1:54 pm

Desktop mag: Creative Practice & Pain Management

By |2021-02-24T10:29:47+11:00July 5th, 2013|Categories: Creativity, Online, Print|Tags: , , |

(Article from Desktop Magazine’s feature article: Creative Practice and Pain Management)Written by Soula MantalvanosOrigin of Image is a multidisciplinary design studio based in Collingwood that is managed by professional and personal partners, [...]

June 26th, 2013 2:01 pm

The Design Files

By |2017-12-11T14:28:45+11:00June 26th, 2013|Categories: About, Creativity, Living, Online|Tags: , , , , |

...I'll clarify now, this post is a very positive one. It's about standing up, facing the world which requires courage, strength, being understood, supported, alot of struggle, and a damn load of management skills. ... not only did Lucy Feagins share our creativity on her brilliant blog, but her address and understanding of our space and lives couldn't have been more spot on or more supportive of PN. It puzzled me that Lucy could understand it when others struggle so much. ... I want judgement to stop. People in pain shouldn't have to say more than 'I suffer chronic pain'. It's harmful and prevents people in pain from going out when they're feeling ok, or rather when they can withstand their pain. If their houses are really tidy, that means they have help. If you see them socialising in one place, doesn't mean they can make it to the next. We are able to smile, we can move, we can walk, we can stand, just not alot. We don't hunch, in fact our practitioners teach us to have great posture, we might sit funny, walk slow, not carry much, and stare as you may you won't see our pain. If we appear somewhere and look great, we planned for that and it took alot of sacrifice and help. If you have doubts, keep them to yourself please because there's no doubt in our mind we're in pain.

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