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.
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Where to next? (Part 2/3) I knew there was something seriously wrong with my sacral stim implant. By the time that information was confirmed, my mind had run off a few thousand questions. I’ll share a few: Question number 1: [...]
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.
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!
Thank you for your patience while I updated my website. I feel refreshed now…! I’m really happy to not only have updated my website but to be reporting on my positive progress. I’m doing that by ‘Marking the beginning of [...]
The effort my insurer makes to appear stupid and ignorant in their daily work, and the effort they make to voluntarily communicate their ignorance, today, for some reason (let's call it this fab new medication) made me want to laugh.
I'm still fighting for reimbursement of my peripheral and sacral stimulation implants. Insurer X (let's call them that but really what I call them is irrelevant - they're all the same!) are investigating valid reasons to support my treatments (or [...]