About Soula Mantalvanos

“I felt I had lost my independence, I could not communicate and express my personal experience and that no one understood me.” Soula combines her many years of chronic pain with her professional design experience to advocate about misdiagnosis and injured Victorian workers. Soula founded pudendalnerve.com.au and PainTrain My Health Summary to help raise the quality of care for those enduring and treating chronic pain.
September 7th, 2022 11:51 am

A Venetian Refuelling

By |2023-02-05T10:26:12+11:00September 7th, 2022|Categories: About, Blog, Living|Tags: , , , |

I feel completely rejuvenated and jubilant after Theo's and my recent 3-week trip to Italy. Since my spinal cord stim implant, our life and livelihood seachange, and now, with an anti-inflammatory focus, I can feel confident that pain levels will remain right down and my happiness right up. This is a big announcement for my brain.

July 28th, 2022 2:47 pm

Talking Healthtech: Dr Valerio Vittone on Long COVID

By |2022-11-27T15:30:37+11:00July 28th, 2022|Categories: Blog, Learn, Professional Resources, The pain|Tags: , , , , |

Since investigating my DNA with Dr Valerio Vittone, I believe more that my health issue is not about chronic pain but rather about inflammation. I've reaped magnificent rewards since implementing recommended dietary [...]

June 9th, 2022 4:08 pm

My Health Story Now Live in Your App Store

By |2022-11-26T20:58:47+11:00June 9th, 2022|Categories: Help, My Health Story, Professional|Tags: , , , , |

I, Soula, the way I live and the type of person I am, and my story were fundamental to appointments and essential to my treatment. In addition, I realised my health experience was unique and needed to be understood. Professionals are understanding this a lot more now. On educational health networks, I see this 'tip' all the time now: People with invisible illnesses are more than their diseases And on professional forums, I read how lost practitioners are as to how to help people living with ongoing illnesses (which also explains why so many of us are enduring long-term illnesses!). So are you ready to navigate? Are you ready to put your unique experience forward and be better understood? Then, your story is the most essential part of this change. And if you need some guidance, I'm happy to zoom in if you need online training sessions, or you can email me a 'how do I...' question, and I'll film the answer for you.

May 8th, 2022 1:52 pm

Keeping up my Stamina

By |2022-11-27T15:30:37+11:00May 8th, 2022|Categories: About, Blog, Living|Tags: , , , , |

I was going to title this blog Fatigue, but after reviewing it repeatedly, I decided to title it Stamina instead. It took me years to get to 'managing'. Now I have transitioned to pacing. As stated in my previous post, I'm living now. I'm not in a passive state watching and being attacked by an unpleasant experience. It wasn't easy getting to the state of 'management'. There are so many 'have to' activities – we can't avoid these. When I explain my 'have to' activities such as showering, making a coffee, sitting/standing all day, dressing, etc., people look at me bewildered, but you'll get me. Until this fight is experienced, one can't understand that day-to-day activities can strip your energy and count as 'activity'. It feels insane when faced with this realisation. But I have found a way...

April 24th, 2022 1:38 pm

Report from ISO

By |2022-04-24T21:00:08+10:00April 24th, 2022|Categories: About, Blog, Creativity, Living|Tags: , , , , |

Well, hello, COVID. After all the care, caution and staying in, Omicron finally caught us from no idea where. After all the fear of catching this virus, considering my Inflammasome gene and my chronic health issue, I'm happy to report that I breezed through it! I was abundant with the usual energy that comes to me when social obligation falls away. In addition, the pain levels fell away as they have done with previous colds – can the brain not manage two signals or is a virus some distraction? I went with it. I got stuck into my studio!

April 12th, 2022 8:53 pm

Soula Mantalvanos, Published Author of the Journal of Medical Internet Research

By |2023-01-24T16:12:25+11:00April 12th, 2022|Categories: Advocacy, Blog, Learn, Living, Online, Professional Resources, Workcover|Tags: , , , , , , |

I'm an author of What Injured Workers With Complex Claims Look For in Online Communities: Netnographic Analysis, now published in one of the world's best medical journals.  

April 12th, 2022 8:50 pm

My Health Story now LIVE

By |2022-11-26T20:58:47+11:00April 12th, 2022|Categories: Blog, Learn, Professional Resources|Tags: , , , , |

My Health Story is now live and has totally replaced PainTrain My Health Summary. My Health Story goes beyond helping people communicate their stories of living with chronic pain. It now presents a way for more individuals enduring chronic and complex health issues to communicate their health stories and manage their healthcare better. For healthcare practitioners, it presents an opportunity to diversify your care offering and influence positive behaviour in the overall patient journey. My Health Story takes a holistic view of each unique lived experience and understands that patients are more than their disease.

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