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 27th, 2022
8:43 pm
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.
July 28th, 2022
2:47 pm
Talking Healthtech: Dr Valerio Vittone on Long COVID
Since investigating my DNA with Dr Valerio Vittone, I believe more that my health issue is not about chronic pain but rather about inflammation. I've reaped magnificent rewards since implementing recommended dietary [...]
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.
March 6th, 2022
12:19 pm
It’s my Birthday
I feel like switching the 'anniversary' thingy to a 'birthday.' I know it sounds oddly celebratory, but I also know that you have read stranger things on this website so remain unafraid to explore this latest idea with you.
January 19th, 2022
12:29 pm
I’m on Fire
I bet the first thing you thought was, ‘she’s having a flare’. But you know what? I’m using the word ‘fire’ in the way that people living with chronic pain only dream [...]
October 9th, 2021
12:43 pm
Portraying Pain’s Invisible Characteristics
I thought you might like to see some of the artwork I’ve created over the past two years. It’s been slow but I’m really happy with this [...]