Tasmania’s Museum of Old and New Art (MONA) has one of the best gallery gift shops. I saw this fantastic jigsaw puzzle of Friday Kahlo in their recent newsletter. I jumped on the order! I knew this jigsaw would server me as a double whammy! I love being home [...]
I assumed the pain ‘industry’ was still learning about the management and treatment of chronic pain and that’s why communication was so poor. I assumed it wasn’t like that for other severe health issues. But… My mum had a stroke five weeks ago and it’s been an incredible communication insight. The communication relating to mum’s [...]
I've been waiting a while before writing about the current state of the world and its effect on me, my life and the chronic pain. I've been feeling quite confident with a kind of 'meh' attitude about the daily routine. I've been sleeping like a baby and if I remove the financial stress from the situation, I'd have to say, I'm having a jolly time! As the silence began to build outside a few weeks ago, I found myself listening to the news hourly – that was about the only thing that changed for me when COVID19 stopped the world. It'll be dawning on you... I've had a lot of experience with 'isolation'! I've been living a scaled-down life for much of my last 13 years. Living a life within a 1-3 km radius and not seeing family, friends or living as freely as I like has been my PhD study topic! Profession: Isolation specialist and physical distancing Queen. In fact, without the physical demands of working, seeing family, friends and socialising, my physical ability has increased and the pain levels have even dropped a little! I walk twice a day! And I'm also sharing puppy training duties as well. Yes, we welcomed Olive to our home – a medium size Labradoodle (pictured with me being picked up). This decision to welcome a new fur child is evidence of mine and Theo's isolation experience. Did someone say, 'plan to stay home'? We've got this! Theo's and my conversation went like this; 'Honey, given we won't get to go away this year and it's going to be financially impossible to afford a holiday, why don't we move our plans forward to welcome a dog?' 'It's a great idea, we'll be distracted and it's the perfect time to train a puppy too'. We know what it means to tuck in, stay tucked in and to have to occupy yourself for a very long time.
I’m sure you’ll all agree my advocacy for chronic pain has been extensive in my 13-year lived experience. I’ve learned a lot about who to trust, who I should collaborate with and which message is worthy of me sharing my identity. That’s lead to me to tighten my belt and having to say ‘no’ a [...]
That was my endnote for 2019. As life evolves within my 3km radius, I find myself looking back less and less and looking forward more and more. Bitter, defines the heartache of not being able to see loved ones as often and the missing perks of our previous city life. Sweet, is being defined by new friends, the gallery, our new home and the sea that surrounds us. As for confused, another year has passed and I still don't feel anyone can quite define what's going on with my body. Does it matter heading into a new year?
I have arrived! I have lived half a century. I somehow made it through the horrid decade of my 40’s. I made it through the dark forest of chronic pain. Goodness people can whinge!!! The whinging I’ve heard about ‘turning 50’ has been significant. If I can just take this moment to reply to all [...]
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 χρόνιο πόνο Φανταστείτε πώς είναι να ζει ένας άνθρωπος πονώντας καθημερινά, όλη την ημέρα για [...]
'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.'