Keeping up my Stamina

By |2022-05-09T20:40:00+10:00May 8th, 2022|About, Blog, Living|

I was going to title this blog Fatigue, but after reviewing it repeatedly, I decided to title it Stamina instead. It took me years to get to 'managing'. Now I have transitioned to pacing. As stated in my previous post, I'm living now. I'm not in a passive state watching and being attacked by an unpleasant experience. It wasn't easy getting to the state of 'management'. There are so many 'have to' activities – we can't avoid these. When I explain my 'have to' activities such as showering, making a coffee, sitting/standing all day, dressing, etc., people look at me bewildered, but you'll get me. Until this fight is experienced, one can't understand that day-to-day activities can strip your energy and count as 'activity'. It feels insane when faced with this realisation. But I have found a way...

Report from ISO

By |2022-04-24T21:00:08+10:00April 24th, 2022|About, Blog, Creativity, Living|

Well, hello, COVID. After all the care, caution and staying in, Omicron finally caught us from no idea where. After all the fear of catching this virus, considering my Inflammasome gene and my chronic health issue, I'm happy to report that I breezed through it! I was abundant with the usual energy that comes to me when social obligation falls away. In addition, the pain levels fell away as they have done with previous colds – can the brain not manage two signals or is a virus some distraction? I went with it. I got stuck into my studio!

Soula Mantalvanos, Published Author of the Journal of Medical Internet Research

By |2022-04-12T20:53:18+10:00April 12th, 2022|Advocacy, Blog, Learn, Living, Online, Professional Resources, Work / System, Workcover|

I'm an author of What Injured Workers With Complex Claims Look For in Online Communities: Netnographic Analysis, now published in one of the world's best medical journals.  

I Found My Pain Definition in Lockdown

By |2021-07-22T13:45:53+10:00July 21st, 2021|The pain|

Lockdown time appears to be crucial for pacing back to whole life. Every lockdown has given me a leap of some kind. I genuinely think lockdown together with my spinal cord stimulation has armed me like never before in this 14-year journey. There are moments I'm so comfortable. Of course, it's seconds and minutes, but it's soooooo freeeeeeeing. I 'just' walk over to get something – nothing is restricting me. No fog, no warning signal; it's just me moving in the space. So I can totally focus on what's in front of me, I can hear the quiet, notice the dust and envisage all the things I plan to do.. to the end! It's an uninterrupted dreamy sequence! If memory serves me correctly, this is a typical experience and a sequence that should be totally taken for granted instead of awed. I haven't experienced this before lockdown. EVER. CHECKPOINT: 14 years, 4 months and 21 days (or 5257 or 172 months, 21 days), I have experienced a short uninterrupted sequence of normality.

On Neurostimulation

By |2021-05-07T11:47:16+10:00March 23rd, 2021|About, My treatment|

Neurostimulation has been key in my management of pain. It's also satisfied my wish to find a way to be as self-sufficient with my management as I possibly can be. My first stim was a peripheral stimulation unit (leads under the skin) and that was implanted in 2011. I still have this unit as a backup. In 2015 I had a sacral stim implanted but that fizzed (in my opinion) within three years. So in 2019 I had the sacral stim removed and replaced with a spinal cord neurostim. WARNING: In the video, I talk about my experience and have a few Xrays pop up to demonstrate a little detail. If you're the squeamish type you may not want to see the images – they are small, however. Read key blogs about my stim implants experiences and adventures:

Pain management is unique to all of us and the key to navigating the complex journey (I believe) is gathering as much information as possible. I hope this vimeo is of great help.

Perhaps Pain Isn’t my Brain’s Fault

By |2021-03-09T21:06:35+11:00March 4th, 2021|About, Blog, Living|

Or my nervous system's fault either. Have you ever let your mind wander beyond the boundaries of chronic pain research? I can't help it, my mind flies around all over the place! Today, it's in Maroni, a village in Larnaca Cyprus. That's where my mum was born. I've been wondering alot about village life lately. And more specifically about my grandmother (Giagia) and her lifestyle in Maroni. I've visited Cyprus four times – each time without pain! I really love mum's village Maroni, it's beautiful. I always make a point of walking around the whole village when I visit so am very familiar with its nostalgic, stony, dry characteristics. I love the feeling of my feet on the ground in Maroni – not sure what that is. Perhaps a memory...

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