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.
Why end the story now?
Like the media around chronic pain, I’ve been blogging myself (and you) to tears lately, and I don’t want to do that for another decade.
I’m tired of reading the same research hoping to present something helpful to you.
Even though I’m better, I find self-observation and documentation a negative.
My time developing My Health Story has proven more effective and far more enjoyable.
And you all have abundant avenues for connection and information – we have come a long way from the deserted online world of 2011.
I have learned everything through self-discovery; I found my health team, made the decisions relating to treatments, found the most valuable resources, and committed to the sacrifices.
Through this, I heard, ‘Great work, Soula, you’re making it happen, you’re doing really well, you know best, you need to provide consent, you’re the expert, oh you’re so brave’. And the comment I loved most was, ‘Can you give me the names of the people that have helped you?’ That was my GP! (Glad I could be of assistance!)
I fully recognise the autonomy of this journey.
I also fully realise that my path will not help you figure out yours. And yet, that was my intention for building a resourceful website and saving others from enduring the same thing.
After visiting the Digital Health Festival with My Health Story in hand and seeing other novel health resources that also place health management in the hands of people – I mean actually motivating them to self-care, it makes me feel blogging about the complexity of chronic illness is a little useless.
Stop reading, and take action!
It’s how I felt about group therapy sessions – why would you sit around focusing on pain and causing yourself more pain while taking up valuable capacity? It didn’t make sense to me.
Reading other peoples’ stories is helpful and often inspiring, but what comes of it? We still ride solo to determine if the information can impact us. And reading all the research isn’t helpful anymore.
And I’ve written a lot since 2011… a load!
And social media is a super drag… my feeds are full of chronic pain information… it’s no longer helpful or good for me (please understand as I begin refining friends).
What did I learn… all by myself?
With a backpack containing a fantastic neurostimulation implant (or three minus one lost along the way!), my herbs, the supplements from my DNA investigation and the fabulous report identifying the elephant in my body that sparked the horror due to my pop, drop and diagnostic odyssey, I feel content.
All this, I found out for myself. No help came and found me, and none was prescribed by a GP.
As I continue presenting at GP training events wholeheartedly, I believe this sad situation will change, and GPs will be able to help a lot more.
For 16 years, every day, every hour of those days, I’ve had to figure things out myself to reduce my body’s internal rage and improve my quality of life.
As side battles, there was income protection and workers’ compensation.
I didn’t win these battles, and no one can ever win as justice cannot be served here in Victoria and hold WorkSafe/WorkCover to account for their unethical actions – they are fully protected by writing their legislation.
In a way, thinking about finalising this adventure on National Pain Week is like letting go of pain and relishing the power of self-figuring. Now that’s something to celebrate!
I’ve figured there’s really nothing else to say.
I won’t disappear.
I will maintain but cull the website so the best parts of this story remain live. And you’ll always be able to find my art and me at My Health Story, where I will continue to share helpful resources for subscribers and followers and take pleasure in truly making a difference in the lives of people with long health stories.
Thank you for your support, friendship, donations, comments, messages, and time.
An extra special thanks to those who helped me make the free member resources. The greatest thanks goes to Peter Lamont for making the award-winning documentary The Hurting Strings – An Artist’s Story of Pain.
Stay empowered and strong; although complex and full of sacrifices, I believe finding the quality of life while living with chronic illness is possible.