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Ken Loach’s I, Daniel Blake – Cannes 2016 Winner

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Congratulations Ken Loach – and THANK YOU for giving people with invisible illnesses a voice.

Though doctors and specialists can confirm that he is indeed gravely ill, the fact that Dan doesn’t display any outward signs of sickness works against him, and a faceless assessor declares him fit to work.

Continue Reading

Cake, Jennifer Aniston

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(Official site www.cakemovie.net)

Story

Claire Bennett (Jennifer Aniston) is in pain. Her physical pain is evident in the scars that line her body and the way she carries herself, wincing with each tentative step. She’s no good at hiding her emotional pain either. Blunt to the point of searing insult, Claire’s anger seethes out of her with nearly every interaction. She has driven away her husband, her friends — even her chronic-pain support group has kicked her out. Continue Reading

Ambrosia

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Ambrosia

Thank you PainAustralia and Chronic Pain Australia

You are invited to attend a special preview of a new feature film ‘Ambrosia’ by director Rhiannon Bannenberg presented during National Pain Week at Fox Studios on Thursday 23rd of July.

The film which deals with the psychological impact of chronic pain on a young woman’s life has been selected by hosts Painaustralia and Chronic Pain Australia to be a key event in the annual week-long festival.

National Pain Week 20 – 26 July aims to remove the stigma and silence around the invisible burden carried by those who suffer chronic pain and their carers. This screening of Ambrosia which adds to an Australia-wide line-up of activities will appeal to a very broad audience.

Tickets can only be purchased online before the event. Tickets will not be available on the night. Continue Reading

Pelvic Pain Foundation of Australia’s Melbourne launch

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PPA Launch - Soula, Lorimer and Anne-Florence

After 4.5 years and desperate, Soula took a stab and emailed Lorimer Moseley who kindly replied and suggested she contact Anne-Florence Plante. Anne-Florence diagnosed Soula instantly.

Melbourne launch March 24, 2015

I was thrilled to be invited to The Pelvic Pain Foundation of Australia (PPFA) Melbourne launch last night. I originally met Dr Susan Evans when I was invited to present my patient story at AIM Pain 2014.  I had cyber met Dr Evans prior, asking if I could include her details on this website, in fact I’ve ‘e-met’ many pain professionals this way. I never dreamt that one day they may all be in the one room together, all of us advocating for pelvic pain and helping start up a National organisation that addresses pelvic pain for women AND MEN.

Needless to say, last night I went on a magic carpet ride! Continue Reading

SBS Insight: Ouch!

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Last night SBS’s Insight program aired Ouch! How much pain can you handle? 

I thought the program was great and provided a great broad definition about pain’s many forms and the varying ways it impacts people’s lives.

As usual, I was waiting for a lead. Waiting to hear that someone with chronic pain had found a way out of it and was cured. Mrs Gleeson, I could have bet you were going to say you were fine, after all, you looked it! And so did Lesley Brydon, Pain Australia‘s CEO… how could she be in any pain?

Tonight was the night I was going to hear about my cure.

It didn’t happen.

That made me want to write this post… I want to write to those that felt the slump and weight of the thought that remained with them at the end of the program that went something like this: I’m never going to get better.

It made me want to write, don’t believe it!

Well I don’t believe it, I don’t accept that my body will remain in this rut as long as I live and I believe this because I can see I’m getting better sloooooooowly. Answering the following questions allow me to come to that conclusion:

  • How am I compared to a year ago?
  • How is my activity compared to a year ago?
  • How does my treatment compare to a year ago?
  • How are my pain levels compared to a year ago?
  • What is my creativity like compared to a year ago?
  • What is my work ability like compared to a year ago?
  • How much help do I need compared to a year ago?

My answers;  I am better, more active, having much less treatment, my pain levels are lower, I am more creative, I have sustained my work ability and I need a little less help. There!

It’s not the best answer, a year is a long time but I believe the thinking ‘It is what it is‘ as stated by Mrs Gleeson, almost allows an acceptance, a kind of peace with pain. I experienced that and from there I personally used that calm to pace me back to life.

It’s working.

I believe in brain plasticity, I believe in healing, and I am very well aware our brains are uniquely wired. I’ve always thought, the harder the task, the more committment, sacrifice and discipline required, and chronic pain is definitely the greatest task of my life. I don’t feel there’s another choice for me but to listen to my self, pave my own unique pain management, take in information from programs such as these and their brilliant guest professionals, and just do my best.

I believe I can make my own conclusion to ‘Ouch’… Chronic pain will not be with me forever.

Melbourne Leader story, Soula bares soul over pain

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The following story was published in support of the current National campaign: Nerve Pain is Different. Please help us raise awareness for those with debilitating invisible pain.

If you think you have nerve pain, talk to your doctor and visit www.nervepain.com.au. Complete the online questionnaire intended to help you explain your pain and take a printout to discuss with your doctor.

Melbourne Leader Mon 1 Dec

Resident shares story of coping with daily agony following fit ball accident

By Nic Price for the Melbourne Leader

SOULA Mantalvanos’ life was up-ended in 2007 when a fit ball she was sitting on burst and she dropped to the concrete floor.

She didn’t think much of it at the time and tried to continue her routine of yoga four times a week and regular walks, but that soon became impossible.

Dealing with chronic pain that made her feel like her “finger was stuck in a power point”, the Collingwood resident was not diagnosed until four-and-a-half years later with severe pudendal neuralgia nerve pain.

As she embarked on a journey of living with pain, Ms Mantalvanos and her husband turned their lives upside down in an attempt to find a better quality of life.

They closed their graphic design studio down (Ms Mantalvanos now works part- time) and even removed doors in their house so she wouldn’t have to open and close them.

“I’ve learned not to lift more than a few kilos, to sit a lot, get in the car a lot,” Ms Mantalvanos said. Continue Reading

National campaign: nerve pain is different

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New research reveals nerve pain affects the productivity and wellbeing of Australians


New research¹ shows six out of ten (59%) Australians who report living with neuropathic (nerve) pain are missing work at least once a week due to their nerve pain. Intriguingly, this is higher than those living with other chronic pain conditions such as osteoarthritis and rheumatoid arthritis (where 43% miss work at least once a week).

Pain Medicine Specialist Dr Nathan Taylor, of Sydney’s North Shore Private Hospital, explains how nerve pain is different to other forms of pain:

“Nerve pain affects many Australians. It is often described as being more severe than other pain and lasts longer than would be expected. Nerve pain feels different and is sometimes described as burning, stabbing, pins and needles, or the feeling of electric shocks. It can be associated with numbness or increased skin sensitivity.”

Celebrity chef Ben O’Donoghue shares his story of living with nerve pain as he becomes the ambassador of a new health awareness campaign called Share Your Pain, which launches today to coincide with the beginning of the Global Year Against Neuropathic Pain².

“Share Your Pain aims to increase understanding that nerve pain feels different,” Ben said. Continue Reading

‘The Hurting Strings’ wins International Film Festival Reel Health Award 2014

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Jacinta Cashen, Peter Lamont, Reel health Award 2014Congratulations to Peter Lamont and Jacinta Cashen, who last night, won the ‘ReelHealth’ International Film Festival Award hosted by Monash Health for our documentary, The Hurting Strings – An Artist’s Story of Pain.

The film category entries were: Get Well Soon, The Journey, Your Voice, Behind The Scenes, and Mental Health and The Hurting Strings won The Journey category.

‘This category is a personal account through the journey of health. It may be a patient’s experience, or a doctor trying to implement a new technique in a hospital. It may be the career pathway of a nurse from novice to expert or the evolution of health issue in modern society.’

I must sound like a broken record by now, but once again, I am left bewildered by my chronic pain journey and the contrasting experiences that go from excruciating pain to exhilaration. Above all, I feel incredibly privileged at the opportunities presented to me and so happy to be able to help others by communicating my story. I could not have done this without Theo, my family and of course Peter Lamont and Jacinta Cashen. Continue Reading

Semi Finalist for the Doug Moran National Portrait Prize 2014

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Ms Soula With TheoAlmost 150 works were selected from nearly 1,000 entries.

2014 judges were, Edmund Capon AM OBE, and Lewis Miller, Australian Artist. Both viewed all entries and made their selection of semi finalists.

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. Continue Reading

ANZCA Bulletin: Simple Accident Leads to Life of Pain

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(By Ebru Yaman, ANZCA Media Manger. Read the full article)

Soula Mantalvanos Simple-accident-leads-to-life-of-pain-ANZCA-Bulletin-September-2014Research and resources are desperately needed to ensure that fewer chronic pain patients are told to “go home and live with it”.

Soula Mantalvanos was working in her graphic design studio seven years ago when the fittness ball (also known as a balance ball or exercise ball) she was sitting on in place of a chair unexpectedly burst beneath her. Ms Mantalvanos fell from a seated position onto the concrete floor, her sacropelvic region bearing the full force of the blunt fall.

Her husband Theo ran to her side. After the shock settled, she crawled to the carpeted area and her response was to laugh. The pair “had a good old laugh actually – it was such a silly accident,” she remembers. That unexpected and seemingly innocuous accident would determine the course of the rest of her life. Ms Mantalvanos expected to feel sore but better after a couple of days. But the pain continued, intensified and from that moment shaped her days, her nights, her relationships and her ability to work.

It took nearly five years of chasing answers, of tests and interventions, frustration, grief, and constant, unbearable pain to reach a diagnosis. The fall caused nerve damage in the pelvic area, very real but invisible on MRIs, examinations, X-rays and CT scans. Continue Reading

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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 aggrevated 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.

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