Keeping up my Stamina

By |2022-05-09T20:40:00+10:00May 8th, 2022|About, Blog, Living|

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...

Report from ISO

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

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!

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

By |2022-04-12T20:53:18+10:00April 12th, 2022|Advocacy, Blog, Learn, Living, Online, Professional Resources, Work / System, Workcover|

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.  

My Health Story now LIVE

By |2022-04-12T20:52:27+10:00April 12th, 2022|Blog, Learn, Professional Resources|

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.

CODA 2022: My Lived Experience and I Will Be There

By |2022-03-04T13:40:36+11:00March 4th, 2022|Blog, Learn, Professional Resources|

I'm thrilled to be invited to another educational event IN REAL LIFE I might add.  I really enjoy collaborating with Dr Paul Grinzi as a lot of his educational workshops have a great focus on communication. If people and their health teams can't connect then care isn't going to happen. So how do you reach, connect and help people who live with chronic pain? Come along and learn! PRIMARY AND ACUTE CARE Chronic persistent pain is a common clinical issue, and yet most of us have received very little training in how to best manage patients experiencing this. Not only do we have to manage the clinical and psychosocial issues presented by the patient, we have to recognise and manage our own biases as clinicians. The format for the workshop utilises patient experiences, clinical cases and new frameworks to help further our understanding of persistent pain and how to assist our patients. There is a specific focus on management within the community, but also opportunities to explore the challenges within the emergency and inpatient hospital interfaces. By the end of this half-day, you’ll have optimised your approach, and may find this topic a little less painful.

Mentorship Supported by the Australian Government Boosting Female Founders Initiative

By |2022-05-02T11:13:37+10:00February 26th, 2022|Advocacy, Blog, Online|

Congratulate me! I have been awarded expert mentoring with Buzz Web Media and Women With Wit’s – Lee Ussher under the Australian Government’s Boosting Female Founders Initiative (BFFI) for PainTrain [...]

The Business of Advocacy

By |2022-02-15T12:32:14+11:00February 15th, 2022|Advocacy, Blog, Online|

Over some years and after a third time being banned in some way or form from an official pain organisation's social media, I now feel encouraged to make a point - advocacy is not a business. I began this website to advocate for people living with chronic pain and share helpful resources to avoid the impact of misdiagnosis on their lives. I aimed and achieved gratitude on a global scale, which has fed me. I also started this website to connect people living with chronic pain to professionals who understood them very well and could possibly treat them. I've asked none of these amazing professionals to pay me to be included on this website – we're all working for the same cause, right?  This was never intended to be a business. What I'm seeking is more respect and understanding for the voluntary position of the advocate. So let's pull the bandaid off and frankly define it: Advocacy is costly and time-consuming. It earns us no income; it causes pain and uses a significant portion of the little and precious uptime we get and, advocates are also much greater than their cause. I repeat; advocacy is no business. 

Rebrand Announcement: My Health Story

By |2022-04-24T15:22:58+10:00February 14th, 2022|Blog, Help, Manage, My Health Story|

I was so close to throwing the PainTrain My Health Summary idea out the window when COVID-19 hit.  There was no way I could be positive about pushing on with my little train startup while a pandemic was approaching. But as it turned out COVID-19 catapulted telehealth behaviour and with that came increased interest in health tech and a newborn... the digital patient!  My creative communication experience always encouraged me down this complex path – I found healthcare primitive! The way people manage their health and the way appointments are managed has not changed for eons. If you live with an ongoing medical condition, we know now that it takes teamwork to manage it and you have to be responsible for your own health information (or it all gets documented incorrectly!). Clearly, I believe that we need to step up and manage our health and all things relating to it. We especially need to do this because we all have such lengthy stories to tell! So on that note, here's my big news from my humble little train which is now planning to go way beyond its destination... if you help me, there's a lifetime subscription in it for you!

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