My latest…
My Lived Experience at CODA Conference
The Primary Care workshop at this year's CODA Conference was my favorite lived experience contribution to date! The workshop approach was more effective than my other 'standup gigs'. Something has clicked with me lately – I've stepped out of chronic illness's emotional and physical sides and more often partaking in health education. I like it! We must believe that twitches, spasms, toilet function-changing effects, noise, screaming, soreness, stabbing, burning, itching, fatiguing, and draining effects of chronic pain can be controlled. If you had told me this between my first and 4.5-year mark, I would have felt angry and said, 'My issue is severe, far more serious than everyone realises, and my healthcare practitioners are all missing the terrible thing in my body, and I am going to die from it.'
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.
A Venetian Refuelling (part 2)
While 'researching' places to eat as I sat by the canals drawing, Theo accumulated excellent bearings for Venice's delightful geographical maze. This helped us find the shortest way around the place when we needed it as we're both always concerned about how my up-time is managed. Theo gathered an impressive list of food recommendations, as mentioned in the full report of our Italian trip, Venetian Refuelling (part 1).
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.
Talking Healthtech: Dr Valerio Vittone on Long COVID
Since investigating my DNA with Dr Valerio Vittone, I believe [...]
Online First Aid Course – Tick
...as the latest thrust of telehealth - a positive impact from COVID, continues to roll out, the opportunities for people living with limitations are becoming abundant.
Ian Cleary Lightning Process: Take Your First Practical Step
I have posted much info [...]
My Health Story Now Live in Your App Store
I, Soula, the way I live and the type of person I am, and my story were fundamental to appointments and essential to my treatment. In addition, I realised my health experience was unique and needed to be understood. Professionals are understanding this a lot more now. On educational health networks, I see this 'tip' all the time now: People with invisible illnesses are more than their diseases And on professional forums, I read how lost practitioners are as to how to help people living with ongoing illnesses (which also explains why so many of us are enduring long-term illnesses!). So are you ready to navigate? Are you ready to put your unique experience forward and be better understood? Then, your story is the most essential part of this change. And if you need some guidance, I'm happy to zoom in if you need online training sessions, or you can email me a 'how do I...' question, and I'll film the answer for you.
Hello Happy Ears, Hello Better Night’s Sleep
Who would have thought it? But these wobbly, jelly-like [...]
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...
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!
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.