Busy Advocating and Making Art – My Life Management
Although pain management is the undercurrent of my life, it no longer rules my life activity. This is a tricky mind battle that underlies everything I do. [...]
July 28th, 2024
12:34 pm
May 22nd, 2023
2:50 pm
A glorious facade – just look at me!
(Photograph Ivan Kemp) Do you like this picture of me? When I see this photo of myself, I see someone proud and accomplished. My posture reflects inner [...]
February 12th, 2023
1:25 pm
Soula’s Coconutty Granola
I am skipping more breakfasts; my body manages far better (cutting out goat's feta on the seedy cracker). The less work my body does in the morning, the happier it seems. No pressure! An empty belly is no pressure on the gut. Feeling hungry does not cause pressure and is easier to deal with than the pain effects. I treat myself a couple of times a week to a croissant. On those days, I avoid carbs for the rest of that day. Carbs have to be in very little moderation for me. So finding a non-carb lunch is important, and it had to be easy to put together. Cereal! Well, most cereals have loads of carbs. Granola! A great idea; make a batch and just add fruit. But wait! Most granola mixes have heaps of sugar (and pepitas, which I am allergic to).
December 5th, 2022
11:35 am
Remember! Slow Down to Speed Up
Near impossible! Slowing yourself down when you’re feeling great is a pathetic concept for a person living with chronic illness. It’s not like you ever go very [...]
September 27th, 2022
8:43 pm
Pacing (and Baking)
A brief note on pacing Sometimes pacing means trading a walk to manage baking a cake. I wanted to post this as too many of us managing chronic illness are made [...]
September 8th, 2022
12:47 pm
Soula’s Stylish Seating Aid
Preparing for my recent trip to Venice, I felt the urge to look a little more stylish. So I thought it was time to update my seating aid cover. I was specifically looking for another cover for my trusty custom-cut foam pieces.
September 7th, 2022
11:51 am
A Venetian Refuelling
I feel completely rejuvenated and jubilant after Theo's and my recent 3-week trip to Italy. Since my spinal cord stim implant, our life and livelihood seachange, and now, with an anti-inflammatory focus, I can feel confident that pain levels will remain right down and my happiness right up. This is a big announcement for my brain.
May 8th, 2022
1:52 pm
Keeping up my Stamina
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...
April 24th, 2022
1:38 pm
Report from ISO
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!
April 12th, 2022
8:53 pm
Soula Mantalvanos, Published Author of the Journal of Medical Internet Research
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.