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Theo, and his ‘carer’s’ perspective
The post many of you have been waiting for… Theo’s thoughts, sacrifices and life experience of his daily ‘caring’. I should add that Theo and I have been together almost 20 years, seven of those consumed with Pudendal Neuralgia (PN). What does PN mean to you? To me PN is a yet to be accepted condition that sufferers are unable to express and be understood for. I do not claim that I understand it/the symptoms but I believe that it is real. I see my wife live with it every day (and night). How [...]
The Medical Panels assessment of my work capacity 2014
I know many of you have been waiting for this post. I have been waiting to post it myself but one guess what was in my way? A response from my WorkSafe Agent... and I'm still waiting for it! I received my Medical Panels opinion and they agreed with the capacity I had presented. I was honestly stunned. My opinion read: Question 1. Whether the worker has a current work capacity and, because of the injury, is, and is likely to continue indefinitely to be incapable of undertaking - (ii) further or additional employment or work ; or (ii) further or additional employment or work that would increase the worker's current weekly earnings and, Answer: (i) yes (ii) yes Question 2. If not so incapable, what further or additional employment or work the worker capable of undertaking? Answer: Not Applicable Further to, the report that followed bewildered me, tears streamed down my face. I actually didn't want Theo to read it to me, I was too fearful I'd read another limiting opinion, like the previous one that has me bound to a 'Chronic Pain Disorder' that no one understands. Or, worse still, it was going to be like the Impairment Assessment where the Neurosurgeon on that panel wished me 'a miracle' on the way out whilst contributing to the decision of: '0% whole person impairment... The degree of impairment is permanent'. Theo began... he read mostly accurate details that I had voiced to the Medical Panel, I couldn't believe what I was hearing.
Myself, Ms Soula and my pelvic pain story at the Alliance for Improving the Management of Pain 2014
I would have had to be dead not to front up to an opportunity where I could present my pain journey to 180 chronic pain interested practitioners.
Was I terrified? Absolutely! But as if chronic pain hasn't trained me for that, pushing me past all my boundaries and limits, and facing constant fears... this was going to be a piece of cake in comparison!
The Alliance for Improving the Management of Pain 2014 (AIM Pain 2014) was held in Sydney and PainAustralia were searching for a patient to tell their story. My first thoughts were; I had to be able to tell my pelvic pain story through art, Ms Soula had to be on the stage with me, and I worried that this was impossible to physically manage without Theo's help. As it turned out all that was ok, in fact the organisers were most enthusiastic about the creative side, and the support for both Theo and I was 100%.
I was asked to present my story as honest as possible and in my own words and pictures.
Back to yoga, thanks to Dustienne Miller’s, Your Pace Yoga
This is truly a thrilling post for me to finally be writing. I used to practise yoga 4 mornings a week for at least 45 minutes pre injury. After my warm up poses, my spine unravelling was eight minutes in shoulder stand, followed by another eight minutes in plough pose before Savasana (rest). So you can imagine how many times I've tried to get back to my yoga since knowing the benefits. i was always unsuccessful until I came across Dustienne's Your Pace Yoga dvd. I still can't work out what's different, of course I've made progress but that can't be the answer as it wasn't so long ago I attempted cat/cow pose only to begin flaring. I'd say Dustienne's sequence and breathing is definitely focused on opening, lengthening and creating space in the pelvis, it just feels great and I'm happy to report I've managed it once a week for over a month now. I know that's not huge, but I'm blowing my trumpets that I could sustain one of the routines. I hope to get to both but my struggle lying on my back may prevent me.
Visual Pursuits book review on Art & Chronic Pain – A Self Portrait
In Art and Chronic Pain – A Self Portrait, artist Soula Mantalvanos shares her experience with chronic pain, which has been a debilitating presence in her life for almost seven years. Soula suffers from Pudendal Neuralgia, a painful nerve condition that developed following an accident where a fit ball that she was sitting on burst, causing her to drop violently to the concrete floor beneath. Early on in the book Soula describes that split-second, and the devastating effects that followed. A highly active yoga-loving woman before the accident, throughout the book Soula gives a deeply personal account of the psychological, emotional and physical impacts of living with chronic pain for so many years. These negative effects were compounded by the fact that her condition Pudendal Neuralgia baffled her doctors, and took four and a half years to even diagnose.
Festive cheer or is it festive fear?
When I hear 'festive cheer' I can't help but rhyme it with 'Festive fear', are you terrified at this time of year? Festivities call us to get out of the safe daily zone, step into marathon entertaining, baking, wrapping, socialising, a time to move away from our therapists and their treatments (Lord knows they need a break!) and jump! It's impossible not to wonder, how will this end for my pelvis?