Yep, it's another call for your lived experience. I know how exhausting and affecting these surveys can be. I approach surveys with a personal mental measure of worthiness and value. In [...]
(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 [...]
When will patients be understood and listened to?! It’s obviously necessary to have a peak body addressing the needs of the pain community. Still, the frustration of [...]
Making the invisible visible You'll hear this wonderful reference in my chat with Giulia – to make what is invisible visible is one of her four goals while in the position of CEO at PainAustralia. I found Giulia incredibly down-to-earth and easy to connect with. Of course, with six children, you instantly know she understands pain (and is highly able!!), but her admission that she had never thought of the pain she experienced as chronic really struck me.
I'm a top blogger in this day and age of youthful influencers! And I'm also really proud to be a representative of the lived experience among a stream of companies and services listed on FeedSpot's 70 Best Pain Management Blogs and Websites. And, I'm the only Australian-listed blog in the top 40. Rated number six and facing the world with a profile image among business logos, I feel quite chuffed about this achievement.
Self-management is hard, chronic illness is overwhelming. Chronic illness robs you of your independence and control, leaving you feeling defeated and mentally and physically drained. Add to the endless appointments required; now, we also have to be considerate of healthcare systems under pressure. Guess who gets the short end of the stick? We pay with our lives. Perhaps healthcare systems were destined to burst their stitches because healthCARE was never built to care for people; it was made to keep people relying on it. That's not care. Can taking more ownership of our health make a difference?
Here and There exhibition: paintings, drawings and etchings of Venice by me at Queenscliff Gallery. It's thrilling to be writing this post. To my friends and followers further afield than Melbourne, I will have a virtual tour of the exhibition published on the Queenscliff Gallery (QG) website where you can view the works forming the exhibition and some of my other available artworks. Here and There is a culmination of my recent trip to Venice... to date!
(Image: Soula Mantalvanos, founder My Health Story features in Women in Business, Bellarine Times International Women’s Day special edition 2023) Feature, Women in Business, Bellarine Times International [...]
In 2011 when I built pudendalnerve.com.au, the internet was starved of helpful communities and resources. It was the very reason my advocacy began. I didn't want anyone to be as lost as I was on my search for important health information. There were few online portals where people could connect, and the only health information available was through science journals – no individual could understand them! Health orgs that did have a web presence seemed not to have a dialogue with the consumers they claimed to exist for. Thank goodness that's changing, but we still have a way to go as the usual questions remain; What is chronic pain? How can we manage chronic pain and its symptoms and effects? What are the best treatments, and why is there such a lack of understanding? etc This is where Nerita Lewis comes in with her idea to democratise healthcare with Jaspen.
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).
