Please, participate in this survey. Your personal experience makes a huge difference to research.
This study is being conducted by Dr Vince Polito at Macquarie University and Professor Lorimer Moseley at the University of South Australia. If you have any questions or concerns about the study please contact Dr. Vince Polito at firstname.lastname@example.org
“We are conducting a study investigating pain and body perception. The purpose of this study is to examine the way that individuals describe their actions, their bodies and the environment. Emerging research is showing that the experience of pain is associated with alterations in different aspects of self representation. We hope from this research to better understand the way that chronic pain alters participants’ sensory experiences.
This is an online study that takes approximately 15 minutes to complete.
All participants will go into a draw to win one of four $100 amazon.com gift vouchers.
The questionnaire will take about 15 minutes to complete and can be accessed through the following link:
We would greatly appreciate it if you could distribute details of this research to your group.”
Theo and I celebrate our 20 year anniversary today. 10 of those years we’ve had to unwillingly share with chronic pain, 5 of which, I can totally admit I was not really present.
Celebrations are so hard because you can never celebrate the way you used to.
You can’t celebrate the way you want to either.
Even if 10 years have gone by, I know for sure that Theo and I would have had suitcases ready now and we’d be planning a great trip overseas to mark our anniversary as well as our birthdays which all fall in November. Continue Reading
WARNING: This post contains serious attitude as a result of 10 years of personal experience with chronic pain. The post also contains my personal no nonsense view of living with a chronic illness and (much required) rotten sense of humour, whopping reality check and bonus kick up the backside for anyone who refuses to accept they have a serious health issue.
*Proceed with caution*
Well, surely you can’t blame me for having that kind of attitude after 10 years!
Recently, it dawned on me that when I was diagnosed with chronic pain, it felt like I had been handed a can of worms.
I’ve been mulling over this thought while procrastinating about a second follow-up appointment since my sacral neurostimulator treatment. Specifically, I thought about the time that goes by while I – sometimes neglect to face the intensity of my health issue and what the consequences are as a result of that neglect.
Yep, it translated to a can of worms. Continue Reading
In just a few days I will be seeing Dr Christelis.
I’ve had one follow up appointment since my sacral stim implant.
It’s not that the stim has miraculously sorted my chronic pain issue, and not that I haven’t had a million symptoms to question, but I’ve come to learn that symptoms change alot. So I wait weeks, even months before deciding whether I need an appointment.
During this time a fair bit of info accumulates. I learn alot about my treatment and alot about how my body responds to it. It’s impossible to remember all this detail.
Thoughts I battle before an appointment are – how I’ll manage the car ride, my preference to be self managing, and that I’m sick of appointments. There is also the cost issue to take into account and that there are others who need these appointments also. A good pain specialist is busy.
Being conscious of the above, I’ve learned to manage appointments better. I plan for the appointment by using Pain Train to speak for me and remind me of everything I want to say.
Wanna see how I do this?
Devastating about Lady Gaga. Chronic pain does not discriminate.
It’s not the way I’d prefer people to be educated. I would never want anyone to endure chronic pain but with news of Gaga’s cancelled tour people might believe that invisible pain can be this debilitating. It can leave you hospitalised and/or change your life so much that you no longer recognise it…
(Article from The Guardian Fibromyalgia: the chronic pain that thwarted Lady Gaga’s tour)
Body in Mind posted this excellent research from Marina Pinheiro and Gustavo Machado about the abundant health apps out there; What App is Good for My Back?
Pulse+IT also recently posted their story, There’s a bad app for That.
There are various purposes health apps are made. From where I’m standing, my app was never a promise to solve a health problem – that’s impossible.
I’ve been asked many times why Pain Train isn’t available as an app. Pain Train currently is fully functional as a website on any desktop or hand-held device.
The two main agendas of Pain Train, are: Continue Reading
I’ve been contacted by Sarah Hudson, Media and Content Producer for Say What, a Finnish media company who is seeking to make a realistic documentary about Australians who are battling with opioids.
It’s an issue that requires serious address so please, if you are able to share your story to help reach others – no matter where they may be in the world – please read below and contact Sarah directly.
Finnish TV doco series Say What is visiting Australia and would like to cover some real life stories that go deeper than the shiny tourist images of Sydney.
They’d like to interview and spend some time with someone who is currently struggling with opioid dependency:
“We’d like to hear from you if you’re living that experience at present, or if you know someone who’s willing to share their story”
All correspondence is confidential.
Please email Sarah Hudson directly at email@example.com“
Who are Say What?
I’m thinking it might be relevant for followers to see where I moved to. So, here you go – welcome to Queenscliff!
It has been a huge transition (by now you’ve heard about it) but moving from my previous (20+year) city life to this seaside town is quite a change!
Kind of forced sea-change! Continue Reading
My sacral stim and I have known each other for a full 17 months now, so I felt it was the right time to make some comments and reflect, again, on this self management business.
Yes, the sacral stim is making a huge difference.
Now remember – I’m talking about my pelvis, my pain experience, my brain, my nervous system and my genes
Three (of my never-ending) realisations for living with chronic pain are that I have to:
- accept that my life and I have changed – forever
- commit to a new way of living, and
- make the sacrifices that it takes to self manage
Chronic pain really blurs life so it takes time to realise the impact (positive or negative) of any treatment or change of activity.
Time seems shorter for me. When I compare myself with full capacity humans, I feel I achieve less and the physical cost is greater.
Not the best value! But it’s what I can get.
The good news is: Continue Reading