Every year I think something amazing will happen during National Pain Week. But every year, nothing amazing ever does. We all wait for answers, but either the answers don't come, or they prove more tiresome. Worst of all, the answers are a direction to a lonely zone – the figure-it-out-yourself zone! So, figure it out myself; I will this year! I'm making National Pain Week AMAZING by writing the end of this story.
Woohooo! The startup world is beginning to thrive with people who want to impact healthcare using their negative experiences. These people want to help others, change the quality of care and make sure you get better faster. One of these great people is Neala Fulia, and I am excited to have the chance to introduce More Good Days (MGD), a new online digital healthcare company Neala founded dedicated to helping individuals find relief from chronic pain - specifically fibromyalgia. I'm also excited that MGD has become a Friend of My Health Story (MHS), which signifies a shared commitment to improving the quality of care for all of us. It's what we all deserve and what has been so slow in coming.
(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 [...]
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?
(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.
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 [...]
Can visualising the personal health experience lead to better care and understanding? You all know what I think and believe about this. But now, I'm aiming to inform the rest of [...]
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 [...]
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. [...]
