Busy Advocating and Making Art – My Life Management
Although pain management is the undercurrent of my life, it no longer rules my life activity. This is a tricky mind battle that underlies everything I do. [...]
Although pain management is the undercurrent of my life, it no longer rules my life activity. This is a tricky mind battle that underlies everything I do. [...]
Are you ready to punch the next healthcare professional you see who asks, 'Tell me your story'? Are you sick of asking for your health information, searching for it, collating it, or sending bits and pieces of yourself all over the place?
Get ready to listen, learn and return to a better quality of life. I 100% believe that had I met Anne-Florence in the first six months after my accident, I would not have endured chronic pain. And this is why I'm confident Anne-Florence will help you return to your whole, fabulous, painless self - or as closest as possible. What she did for me after meeting me at my worst was nothing short of a life-saving boost. And a realignment. She popped me on the path to recovery, and even more than that, she reached me on a personal level, aiding my return to life with ideas relevant to me. I'm thrilled about telehealth and global communication options because they mean she's always there for me! And now, Anne-Florence is there for you too!
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.
Well, not entirely reading; using my ears instead! Where have I been? Seriously, how did I not get into Audible sooner? You would struggle to get me [...]
Meet MHS Friend, Wise Psychology Over my 16-year period navigating this awful forest, I've met some pretty amazing people. I've also met many who have no idea about treating chronic health issues, and they will never become MHS Friends, I can tell you. I'm going to filter the good ones. And you are welcome to help me - pop me an email with your best! Or if you are a service or group and you think, 'hey that's me!' please also contact me or read more here. So let's start with mental health support you can receive via telehealth within a week. It's not uncommon for MHS subscribers to feel hesitant about either joining or discussing their health stories with a healthcare provider via MHS as the practitioner might not be keen on embracing new technology, or they say they ‘don’t have time’, or the patient is too intimidated even to ask. Well, MHS Friend, Wise Psychology, is not like that. In fact, they want to read about your lived experience and learn as much as possible before your appointment.
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.
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 [...]
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.'
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 [...]