September 24th, 2022 11:50 am

My Lived Experience at CODA Conference

By |2023-02-25T11:08:42+11:00September 24th, 2022|Categories: Advocacy, Blog, Events, Learn, Professional Resources|Tags: , , , , |

The Primary Care workshop at this year's CODA Conference was my favorite lived experience contribution to date! The workshop approach was more effective than my other 'standup gigs'. Something has clicked with me lately – I've stepped out of chronic illness's emotional and physical sides and more often partaking in health education. I like it! We must believe that twitches, spasms, toilet function-changing effects, noise, screaming, soreness, stabbing, burning, itching, fatiguing, and draining effects of chronic pain can be controlled. If you had told me this between my first and 4.5-year mark, I would have felt angry and said, 'My issue is severe, far more serious than everyone realises, and my healthcare practitioners are all missing the terrible thing in my body, and I am going to die from it.'

September 7th, 2022 11:52 am

A Venetian Refuelling (part 2)

By |2022-09-07T11:58:48+10:00September 7th, 2022|Categories: Blog|Tags: |

While 'researching' places to eat as I sat by the canals drawing, Theo accumulated excellent bearings for Venice's delightful geographical maze. This helped us find the shortest way around the place when we needed it as we're both always concerned about how my up-time is managed. Theo gathered an impressive list of food recommendations, as mentioned in the full report of our Italian trip, Venetian Refuelling (part 1).

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...

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