(View the story online http://www.abc.net.au/7.30/content/2016/s4547621.htm) Tune in tonight for my interview in regard to navigating practitioners with a chronic illness. On the ABC's 7:30 report (yes, on ABC at 7:30) Patient's have [...]
I was thrilled to be invited to The Pelvic Pain Foundation of Australia (PPFA)'s 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!
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 [...]
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 [...]
APS: How important are support groups for both you and your close family/community? Soula: I can’t say I feel there is much support for my husband and family/community. It’s difficult with invisible pain, it’s a similar scenario with depression, we still don’t get it. Society seems to have been given an immense right to provide their opinion (e.g. with social media platforms) and this has opened up some kind of authority to encourage opinions and much judgment. Not many tread carefully or really think from someone else’s perspective. Although we have more information accessible to us, we seem to be learning less.
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.
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. “It is still a primitive time in pain. Being told for four and a half years ‘this is chronic pain ... go home and live with it, there’s nothing that can be done’ is brutal not to mention primitive.”
Handmade Films - The Hurting StringsLet's watch The Hurting StringsI'd like to express my biggest thanks firstly to Peter Lamont for taking this project on and for communicating my invisible message with [...]
I've met some incredible people who have become my dear friends and my greatest supports during my pain journey. One of whom I often rave about is the wonderful John Quintner, Consultant [...]
(Update: July 18, 2014) Yep, I’m one in five… Watch the full ad at: www.anzca.edu.au/fellows/foundation (June 14, 2014) Chronic pain insists on presenting me with the unexpected. Today, I found myself on [...]
