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Off to the Convenor of Medical Panels with my invisible pain
You know that feeling before something great is going to happen, like just arriving at the airport and knowing you're off on a great holiday? It's a great feeling isn't it? Makes your insides really happy, the body and mind get a lift, and troubles seem to slide away, everything feels like it's going to be alright. Well, I couldn't feel more the opposite right now. I have an appointment with the Convenor of Medical Panels on Tuesday and I'm feeling more like I'm facing a funeral.
Soula Mantavanos…Inside her home and her passion to help others!
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’.”
The book: Art & Chronic Pain – A Self Portrait
I found a way to express my pain, and you can own a copy of it! I didn't like the idea of creating a long description of my living with pain or turning journal entries into a pain story – I've got this website for that!And besides, first and foremost, before the person in pain, I am an artist... so my book had to be creative with few words.At just 32 pages I believe it's a complete story. It doesn't hold the solution to chronic pain but the book is aimed at helping you to explain it to someone else.Art [...]
My pain feels like…
This is a brilliant website! Have you ever been in so much pain you found it too hard to speak? Dumb question, of course you have, you're on a PN website. Well the mypainfeelslike.com website includes a pain questionnaire where you can either select from relevant various answers people have entered about their pain or you can enter your own in order to get a printed report that you can take with you to an appointment. It's a fabulous idea and that's because it actually communicates modern day pain language, none of this 'what is your pain on a [...]
The latest pain definitions from Prof Lorimer Moseley
Getting a grip on pain and the brain – Professor Lorimer Moseley – Successful Ageing Seminar 2013 Always great to hear the latest definitions and discoveries regarding pain from THE pain Professor, Lorimer Moseley. It still stumps me however, to hear how ‘intelligent’ the brain is but yet how stupid its ‘brilliance’ is of learning pain tunes. In fact I’m not sure I’m stumped, I’d rather call it disbelief that all this horrific pain I’ve endured the past 6.5 years can be a tune… a learned behaviour. I certainly don’t dismiss the research and of course we’ll all be [...]
Doug Moran National Portrait Prize Semi Finalist
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 it and am stoked to be considered for semi finalist. Self Portrait (art and chronic pain) will be heading up to Sydney next week for the next round confirming finalists for the National prize. View all the semi finalists here, read more about the prize here and view the portrait and more of my work here. About the portrait A self portrait of a self portrait. A [...]