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.
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 [...]
June 16th, 2022
5:15 pm
Ian Cleary Lightning Process: Take Your First Practical Step
I have posted much info about Ian Cleary and the Lightning Process. Like my DNA investigation, this costs quite a bit but would be very worth it. [...]
June 9th, 2022
4:08 pm
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.
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 12th, 2022
8:50 pm
My Health Story now LIVE
My Health Story is now live and has totally replaced PainTrain My Health Summary. My Health Story goes beyond helping people communicate their stories of living with chronic pain. It now presents a way for more individuals enduring chronic and complex health issues to communicate their health stories and manage their healthcare better. For healthcare practitioners, it presents an opportunity to diversify your care offering and influence positive behaviour in the overall patient journey. My Health Story takes a holistic view of each unique lived experience and understands that patients are more than their disease.
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.
March 4th, 2022
1:26 pm
CODA 2022: My Lived Experience and I Will Be There
I'm thrilled to be invited to another educational event IN REAL LIFE I might add. I really enjoy collaborating with Dr Paul Grinzi as a lot of his educational workshops have a great focus on communication. If people and their health teams can't connect then care isn't going to happen. So how do you reach, connect and help people who live with chronic pain? Come along and learn! PRIMARY AND ACUTE CARE Chronic persistent pain is a common clinical issue, and yet most of us have received very little training in how to best manage patients experiencing this. Not only do we have to manage the clinical and psychosocial issues presented by the patient, we have to recognise and manage our own biases as clinicians. The format for the workshop utilises patient experiences, clinical cases and new frameworks to help further our understanding of persistent pain and how to assist our patients. There is a specific focus on management within the community, but also opportunities to explore the challenges within the emergency and inpatient hospital interfaces. By the end of this half-day, you’ll have optimised your approach, and may find this topic a little less painful.
February 14th, 2022
3:05 pm
Rebrand Announcement: My Health Story
I was so close to throwing the PainTrain My Health Summary idea out the window when COVID-19 hit. There was no way I could be positive about pushing on with my little train startup while a pandemic was approaching. But as it turned out COVID-19 catapulted telehealth behaviour and with that came increased interest in health tech and a newborn... the digital patient! My creative communication experience always encouraged me down this complex path – I found healthcare primitive! The way people manage their health and the way appointments are managed has not changed for eons. If you live with an ongoing medical condition, we know now that it takes teamwork to manage it and you have to be responsible for your own health information (or it all gets documented incorrectly!). Clearly, I believe that we need to step up and manage our health and all things relating to it. We especially need to do this because we all have such lengthy stories to tell! So on that note, here's my big news from my humble little train which is now planning to go way beyond its destination... if you help me, there's a lifetime subscription in it for you!