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It’s taken almost 9 years but I’ve realised that chronic pain requires alot of study – dare I say never-ending study? I believe my research for pain relief for chronic pain may be paving the way for a thesis! I’ve [...]
The following story was published in support of the current National campaign: Nerve Pain is Different. Please help us raise awareness for those with debilitating invisible pain. If you think you have nerve pain, talk to your doctor and visit [...]
APS: How important are support groups for both you and your close family/community? Soula: I can’t say I feel there is much support for my husband and family/community. It’s difficult with invisible pain, it’s a similar scenario with depression, we still don’t get it. Society seems to have been given an immense right to provide their opinion (e.g. with social media platforms) and this has opened up some kind of authority to encourage opinions and much judgment. Not many tread carefully or really think from someone else’s perspective. Although we have more information accessible to us, we seem to be learning less.
I would have had to be dead not to front up to an opportunity where I could present my pain journey to 180 chronic pain interested practitioners.
Was I terrified? Absolutely! But as if chronic pain hasn't trained me for that, pushing me past all my boundaries and limits, and facing constant fears... this was going to be a piece of cake in comparison!
The Alliance for Improving the Management of Pain 2014 (AIM Pain 2014) was held in Sydney and PainAustralia were searching for a patient to tell their story. My first thoughts were; I had to be able to tell my pelvic pain story through art, Ms Soula had to be on the stage with me, and I worried that this was impossible to physically manage without Theo's help. As it turned out all that was ok, in fact the organisers were most enthusiastic about the creative side, and the support for both Theo and I was 100%.
I was asked to present my story as honest as possible and in my own words and pictures.
Pain in the pelvis can include pain 'down there' too... sometimes 'back there' as well! True! Just follow the path of the Pudendal Nerve and see where its extremities are... I have cyber met many women who suffer with this awful condition called, Vulvodynia. The Pudendal Nerve branches extend to the Vulva, and so the condition is certainly 'related' to the whole Pelvic Chronic Pain issue. I personally relate to the condition after having extremely high sensory signals (almost maddening like I had my own 'hoo-ha' stuck in a power point!!), up until an oversized pelvic ligament was found and resected. Thankfully that high sensory pain (and associated issues) ended for me there. Of course my Pudendal Nerve and I are still in a personal battle over its insistant pain tune. But... I'll leave my personal details there and concentrate on some much needed awareness for my pain sisters who are out there telling their story and providing a voice to those who can't bare to speak about this awful issue, Vulvodynia. Firstly, a wonderful and supportive cyber friend, Vanessa Watson who lives in Perth and helps run the Pelvic Pain Support group with Catherine Aurubind for HOPE (Health Organization for Pudendal Education). Vanessa's story was also recently published in The Sydney Morning Herald. You can also find us chatting on Facebook. Secondly, Esther runs her 'Mad Peach, living with chronic pain in the hoo-ha' blog, and might I add with a great sense of humour. Read her account and many other accounts from her followers at: madpeach.blogspot.com.au. And thirdly I'll add a recent story, Privacy around private parts hurts women's health, which went to air on the ABC'S 7:30 report last week. It is certainly difficult to speak of this very personal pain but the more documentation and the more we share our stories, the more courage we give to our sisters to speak up. Speaking up means we share our treatments and knowledge and bring pain relief and quality of life. Silence will take us nowhere. Please share this post and related links.
Many of us here at BiM went to the Festival de NOI a couple of weeks ago. It was fab. However, we know that most of you couldn’t make it and we thought we wold briefly recap some of the [...]
What does it mean? From what I've gathered it basically means big general pain bucket and, its time to update the Wrongs Act 1958. And I'm stating very obvious information here because our Government has missed a very small detail... its 2012!!! ...Hello, anyone out there? If you are, it's time to update the Wrongs Act of 1958. Injured workers have injuries that can be addressed more appropriately, giving them a greater chance of getting back to work and lessening instances of permanent damage if the practitioners in the system can identify and use current information. (Or are you waiting for the 50 year anniversary?!!!)
The clinic offers an alternative approach for women who have tried other treatment options but still have a high level of pain. The staff in the clinic come from a range of health professions. Together we will work with you to explore the range of possible causes for your pain and to offer ways to treat or to help you manage your pain. There is good evidence to suggest that this approach to chronic pain is beneficial. Our aim is to work with you to increase your quality of life.
I was active, I had capacity, boundless energy to execute my creative thoughts (and meet the expectations of a full social calendar!). I worked veeeeery long and wonderful days, I walked everywhere, lunching, dining, starting every day at a local cafe, picking up art materials, walking the dog, running the dog, to Carlton, the city, Fitzroy, I skipped through the streets of the great arrondissements of Paris when on annual holidays, and swore by my four day a week yoga routine that unravelled my body and had me feeling like Gumby warm to the ends of my extremities... There was no 'tired', 'sore', 'fatigued', 'have to rest', there was no 'pain'. Like I said, it was bliss.
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.
