February 25th, 2023 11:06 am

Introducing Nerita Lewis, Founder of Jaspen, a new social platform

By |2023-02-25T11:11:25+11:00February 25th, 2023|Categories: Blog, Learn, Professional Resources|Tags: , , , |

In 2011 when I built pudendalnerve.com.au, the internet was starved of helpful communities and resources. It was the very reason my advocacy began. I didn't want anyone to be as lost as I was on my search for important health information. There were few online portals where people could connect, and the only health information available was through science journals – no individual could understand them! Health orgs that did have a web presence seemed not to have a dialogue with the consumers they claimed to exist for. Thank goodness that's changing, but we still have a way to go as the usual questions remain; What is chronic pain? How can we manage chronic pain and its symptoms and effects? What are the best treatments, and why is there such a lack of understanding? etc This is where Nerita Lewis comes in with her idea to democratise healthcare with Jaspen.

October 4th, 2022 2:30 pm

WEBINAR: Can visualising the personal health experience lead to better care and understanding?

By |2022-10-04T14:30:46+11:00October 4th, 2022|Categories: Advocacy, Events|Tags: , , , , , , |

Can visualising the personal health experience lead to better care and understanding? You all know what I think and believe about this. But now, I'm aiming to inform the rest of [...]

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.  

Go to Top