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My Lyrica Closure

2020-09-12T15:50:18+10:00September 12th, 2020|Blog, Learn, Professional Resources|

Life's pace is vastly slower if you are living with chronic pain. Anticipated outcomes from things like new treatments, explanations about causes of pain, pain research, realisations about personal ideas relating to my own experience all take months, years and even over a decade to arrive. Yesterday was the day I finally received some closure about the wicked Lyrica. There's been a build-up of medication reporting this past year but none of it hit the spot like The Project's report. I love the reporting on this show – it's one of the few programs that brings me to the TV. While watching last night, I got that bullseye feeling: I'm not crazy! How often does a person living with pain come to this blissful realisation? Not often enough I can tell you.

It’s Been a While… So How am I?

2022-11-26T20:58:49+11:00October 6th, 2019|Blog, Living|

Being resourceful is what makes the difference — it is so hard working life out. But Theo and do it. We burrow down and we make it happen. There's no choice... or rather there was but I didn't want a fulltime WorkSafe paycheck. Of course, I think about that. And of course, I often call myself stupid for declining it – I was safe! I had that full-time paycheck for the rest of my life. But creativity and sharing the day with Theo is so precious to both of us. Even with the complexities and risks, it appears to be the only way Theo and I can live. For this, I am grateful! So I'll stop complaining now and go on with what I've been doing and what I am achieving. It's all good! I'm moving. Life is in forward motion after being so still for so long – a decade at least!

Hello. I’m back!

2022-09-06T11:40:14+10:00September 27th, 2019|Blog|

It's an act of forwards and backwards, sideways and a lot of down ways. It's really hard work. The less it yells, the better I feel and only then can I do more and pace up. The more I poke it, the worse it gets. The worse it gets, the deeper into the hole I go and further away from coming back out! I don't just pay with pain, I pay with time – lifetime!

Out With the Sacral, In With the Spinal (part 3)

2023-09-04T14:15:20+10:00February 17th, 2019|My treatment|

It will take one whole year until stim and I get to know each other. I've done this twice before, I know! There are programs to explore, capacity to pace, and sitting to try without the aids. I want to hop in a train and a tram, and hop off in the city without an agenda and limits. I want to catch up with my dearest friends, some whom I've not seen since I left Melbourne. We've been living off parcels, emails and the phone, and that really hurts.

Venezia!

2022-09-06T11:44:20+10:00September 9th, 2018|About, Blog, Living|

There was no rushing to catch transport! And the sounds of Venice are soothing and happy. In the morning we woke to the sounds of the local's footsteps and the sounds of them working along the canal. Local chatter in the street, dogs barking and of course, the church bells. Sounds impact a person with a chronic illness. My mind was at peace, it felt rested, all was calming and gentle.

My GPADD18 Presentation

2022-05-17T10:35:37+10:00August 12th, 2018|Advocacy, Events|

I'll deem my efforts a success. I managed. I learned a bundle. I made something of the chronic pain experience. And I believe I provided some insight. I arrived at Yarra Valley Lodge on Thursday night and left Sunday early morning to manage the presentation, question time and a short attendance at the dinner on Saturday evening. So that's 3 nights' sleep (and one nap Saturday afternoon) to get the focus I needed, and so I could appear in a way that I felt reflected my most Soula self. The presentation (below) took weeeeeeeeks to put together! Something that would have taken me a few short days previously. That might sound like a sacrifice to many of you, but with this approach, my pain levels remained low (if not off), and on my return to Queenscliff, I could resume my part-time work and the week ahead as per normal. It worked; I'm pacing up! I do have a niggle, though. We're not learning fast enough. We're not listening hard enough. I left disappointed I hadn't achieved enough. My presentation I couldn't film during the conference for obvious reasons, but I have put together the graphic presentation with my voice over. WARNING: This presentation contains calls for a new approach to managing chronic pain. It calls for bundles of learning for both professionals and patients and sacrifice and 100% commitment. It's a little boring and most disheartening for those searching for a quick fix. In this presentation: 0:28 Outline 0:43 About Soula 0:58 The accident 1:44 Chronic pain treatment & investigations 2:19 The peripheral stimulation implant 2:36 Diagnosis 3:00 Quality of life — More treatment 3:27 Communicating Pain 3:50 What is our understanding of Pain? 4:50 Resources for pain — pudendalnerve.com.au — The Hurting Strings Documentary — My book Art & Chronic Pain 7:14 Changing our ways — New definitions and more!

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