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!
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!
(Excerpt from Neos Kosmos feature story, Chronic pain: the treacherous disease that steals the lives of thousands, MAΡΙΑ ΚΑΜΠΥΛH 25 September 2019) Η συγκλονιστική συνέντευξη – κατάθεση ψυχής της ομογενούς Σούλας Μανταλβάνου, που διαφωτίζει και δίνει ελπίδα σε όσους υποφέρουν από [...]
'I couldn't help but feel that when it comes to bringing a life into the world, we've got things down pat — socially and medically. The supports are there and the stigma isn't. Yet, when it comes to preserving that life, our report card doesn't look anywhere near as good — socially or medically. The supports aren't there, and the stigma well and truly is.'
MEDIA RELEASE 17 June 2019 At last – A national plan for better pain management Painaustralia has today launched the new National Strategic Action Plan for Pain Management. Millions of Australians live with ongoing persistent pain. Chronic pain can have [...]
(Image: 2012 investigator’s photo, read the full post here) ABC investigative journalist, Pat McGrath is looking into the experiences of people who have been through the workers’ compensation system – and those who are still going through it. I recently [...]
I'm finding it draining to advocate and blog my experiences. But also, I don't feel my voice is as necessary anymore. I want to be known for my creativity and where it aligned with chronic pain to influence behaviour change – specifically the structure of appointments.
Then things got even more strange. There was heat, radiating heat where the IPG is, in my face and also other strange feelings that not only added to my pain issues but it made me turn my stim off, more than on! Weird.
While you read this, I'm in total bliss under full anaesthetic having my spinal stim implanted and my sacral stim (which fizzed) removed. I've popped this poem in my head, and now yours too in the hope that Brain Plasticity, in all its madness as clarified so perfectly in Michael's poem and illustration, works its nonsense on me.
If it weren't for my sense of humour, I'd be well and truly dead a long time now. I thought I'd kick off 2019 with something Theo found that is (not, IS, not, IS) so funny. Wishing you all stitches of laughter for 2019... xx Theo & Soula