I've been thinking a lot about you guys. So here I am after a break. Firstly, thank you for your understanding and for giving me the space I needed. The part in my brain that managed advocacy just broke. I also felt I didn't need to do it anymore and that there was enough research out there. But much of the media relating to chronic pain seems to follow a path that is somewhat like fashion. Much media is sticking to the latest whiff of fear-driven news and sadly everyone's focus shifts, once again leaving most of us feeling completely misunderstood. Did the medical profession only just realise that people who needed more and more medication and weren't getting relief were becoming dependent and dying!? And has the medical profession now totally become blind to the people that manage meds just fine? How about the rest of us sitting in-between being told to exercise, meditate and she'll be right mate?! I've read loads of this crap in the past months. It's boring to read the same storylines published in a different way. Why won't the real info stick? Why don't we learn? Why can't we learn? It's like we're all on a ship being steered by a panic-stricken captain who sends us all 'Starboard'. Only when it's too late, does the world realise the ship is sinking because we went too far! Some of us are standing in the middle. Lots to learn yet It feels like much of the medical profession will struggle to ever grasp the FACT that we all experience pain differently. This makes me feel like people living with chronic pain will never find the care and treatment they need. At almost 50yo I'm feeling more changes in my body. There are many that would be a result of not being able to exercise properly over the last 12 years but there are also changes relating to age. I had a shoulder that caused grief for a whole year – it's perfectly fine now. And now I have an upper arm that is causing pain – it'll get better. The pain relating to my shoulder and arm are nothing like the neuropathic pain I experience. Nerve pain is a different beast. I don't care what ANY research says but ongoing, chronic neuropathic pain will NOT go with exercise and/or talking your mind out of it. It's a different beast that requires a specific balance of pacing – unique to the individual! It's an act of forwards and backwards, sideways and a lot of down ways. It's really hard work. The way I'm making progress is through my brilliant impactful nerve stims, by adjusting my life and eliminating the things that spark the pain. The less I poke it, the less it yells! The less it yells, the better I feel and only then can I do more and pace up. The more I poke it, the worse it gets. The worse it gets, the deeper into the hole I go and further away from coming back out! I don't just pay with pain, I pay with time – lifetime! Exercise is brilliant for overall relief and relates to general health and maintenance – it's no fix. My experience with neuropathic pain doesn't get better when I'm able to manage a long walk and a little yoga (which I can do now... when I don't have a big event to attend... when I'm sleeping well.... when I'm not travelling... when... when so many factors align!). One trip in a car and it's all on again for me. And in fact, I avoid exercising if I know I have a long trip the next day – my body doesn't manage both activities. It doesn't manage many group activities. My body manages about 30% of what it could manage if it didn't have to manage pain. Think of it as added pressure on the system – that's how this beast operates! The backpack of fuel empties differently for each of us. For some, it empties after walking 3km while able to work. For others, it empties walking zero km and being unable to work (and simply managing the day is too hard). The combinations are endless. Unique to each of us in FACT. It's exhausting feeling that people don't understand this type of pain. It's exhausting that many professionals put all types of pain in the; 'exercise, meditate and you'll be alright mate' basket (Australian version!), OR the previously 'swallow a load of medication, keep doubling your doses and you'll be ok' basket. What a mess! It's painful and exhausting, I imagine, to have been managing your medication but to now have it taken away from you. Or that you are now being treated like a child (worse still, an addict!) in order to access it. My shoulder pain is the; 'exercise, meditate and you'll be alright mate' pain. I push through the pain to exercise the shoulder and my body part screams and then thanks me. Neuropathic pain is not like that. If I push through, too far, the alarm bells are off!! What happens after that? I fall asleep... standing up... from fatigue! My ability to string a sentence clearly disappears - the words just stop forming! My thinking goes, my coordination goes, my functions go, my sleep goes, my feet feel blown up and it's hard to step on them... For each of us the 'cost' of overdoing it is different. For every second we each push through the 'cost' will be different. A one minute push through pain could require a 1-hour recovery for me. In my 3rd year living with pain, it would have been days – yes, days until I was able to reduce the pain levels to manageable! I was a ball of unrelenting fire, spasm and pain at the slightest movement/activity (or noise!). I paced it back so slowly and with the great intervention of neuromodulation . My stimulation implants have been the chisel in the glacier – I truly believe no other existing treatment at the time could have reduced my levels of pain. I've experienced many various states with this beast of mine. It's far from simple to work out. I like the way my pain specialist continuously describes it as 'complex'. And does anyone ever state how pain changes? It does... tricky beast! When are we going to learn ? When are we going to learn to listen ? When are we going to learn to listen to each person's unique experience? When are we going to learn to listen to each person's unique experience and care/treat accordingly ? (She's back!)

Soula Mantalvanos | pudendalnerve.com.au

Q: ABC Workers' Compensation System Investigation

(Image: 2012 investigator's photo, read the full post here ) ABC investigative journalist, Pat McGrath is looking into the experiences of people who have been through the workers' compensation system - and those who are still going through it. I recently spoke with Pat and mentioned I'd be happy to share a post on my website as there are many injured workers around Australia who have a lot to share about the traumatic and unfair treatment we receive. I know many of you follow and are too afraid to post your comments as you are being investigated. Here's your time to be heard and for your experiences to make a difference. I'll certainly be chatting more with Pat however all our stories and experiences will make a difference if we share them together. So please, email Pat directly. ALL discussions will remain confidential . Get in touch via email at mcgrath.pat@abc.net.au or hit the button! [fusion_button link="mcgrath.pat@abc.net.au" text_transform="" title="" target="_self" link_attributes="" alignment="" modal="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" class="" id="" color="default" button_gradient_top_color="" button_gradient_bottom_color="" button_gradient_top_color_hover="" button_gradient_bottom_color_hover="" accent_color="" accent_hover_color="" type="" bevel_color="" border_width="" size="" stretch="default" shape="" icon="" icon_position="left" icon_divider="no" animation_type="" animation_direction="left" animation_speed="0.3" animation_offset=""]Email (privately)[/fusion_button]

It’s Been a While… So How am I?
It’s Been a While… So How am I?

Blog, Living

It’s Been a While… So How am I?

By Soula Mantalvanos|2019-10-11T11:40:16+11:00October 6th, 2019|Blog, Living|

Being resourceful is what makes the difference — it is so hard working life out. But Theo and do it. We burrow down and we make it happen. There's no choice... or rather there was but I didn't want a fulltime WorkSafe paycheck. Of course, I think about that. And of course, I often call myself stupid for declining it – I was safe! I had that full-time paycheck for the rest of my life. But creativity and sharing the day with Theo is so precious to both of us. Even with the complexities and risks, it appears to be the only way Theo and I can live. For this, I am grateful! So I'll stop complaining now and go on with what I've been doing and what I am achieving. It's all good! I'm moving. Life is in forward motion after being so still for so long – a decade at least!

5

Gnawing, aching, pain in the butt feeling
Gnawing, aching, pain in the butt feeling

Learn, Professional Resources

Gnawing, aching, pain in the butt feeling

By Soula Mantalvanos|2019-10-05T21:44:38+10:00October 5th, 2019|Learn, Professional Resources|

Ages ago, I blogged about this magic move my diagnosing physiotherapist showed me. It was the first time in 4.5 years that my pain was shut off. It was heaven and I can still remember the moment of silence and [...]

0

Hello. I’m back!
Hello. I’m back!

Blog

Hello. I’m back!

By Soula Mantalvanos|2019-09-27T14:01:31+10:00September 27th, 2019|Blog|

It's an act of forwards and backwards, sideways and a lot of down ways. It's really hard work. The less it yells, the better I feel and only then can I do more and pace up. The more I poke it, the worse it gets. The worse it gets, the deeper into the hole I go and further away from coming back out! I don't just pay with pain, I pay with time – lifetime!

1

«Χρόνιος πόνος: η ύπουλη ασθένεια που κλέβει τη ζωή χιλιάδων ανθρώπων»
«Χρόνιος πόνος: η ύπουλη ασθένεια που κλέβει τη ζωή χιλιάδων ανθρώπων»

Advocacy, Blog, Online, Pain Train

«Χρόνιος πόνος: η ύπουλη ασθένεια που κλέβει τη ζωή χιλιάδων ανθρώπων»

By Soula Mantalvanos|2019-09-26T17:14:15+10:00September 26th, 2019|Advocacy, Blog, Online, Pain Train|

(Excerpt from Neos Kosmos feature story, Chronic pain: the treacherous disease that steals the lives of thousands, MAΡΙΑ ΚΑΜΠΥΛH 25 September 2019) Η συγκλονιστική συνέντευξη – κατάθεση ψυχής της ομογενούς Σούλας Μανταλβάνου, που διαφωτίζει και δίνει ελπίδα σε όσους υποφέρουν από [...]

0

The Universal Language of ‘Pregnant’

By Soula Mantalvanos|2019-08-16T12:17:08+10:00August 16th, 2019|Blog|

'I couldn't help but feel that when it comes to bringing a life into the world, we've got things down pat — socially and medically. The supports are there and the stigma isn't. Yet, when it comes to preserving that life, our report card doesn't look anywhere near as good — socially or medically. The supports aren't there, and the stigma well and truly is.'

0

Insurer Request: Your Full Clinical File Please!
Insurer Request: Your Full Clinical File Please!

My rants, system, Work / System, Workcover

Insurer Request: Your Full Clinical File Please!

By Soula Mantalvanos|2019-06-30T14:27:05+10:00June 30th, 2019|My rants, system, Work / System, Workcover|

If you dress well - this system assumes you couldn't possibly have a health issue. If you speak well, there's no way you have suffered trauma. If you manage to stay alive through your darkest moments, they assume you can forfeit your compensation. When you are honest and remain transparent, they only abuse your information.

0

A national plan for better pain management (we hope!)
A national plan for better pain management (we hope!)

Blog, Learn, Professional Resources

A national plan for better pain management (we hope!)

By Soula Mantalvanos|2019-06-17T16:17:02+10:00June 17th, 2019|Blog, Learn, Professional Resources|

MEDIA RELEASE 17 June 2019 At last – A national plan for better pain management Painaustralia has today launched the new National Strategic Action Plan for Pain Management. Millions of Australians live with ongoing persistent pain. Chronic pain can have [...]

0

ABC Workers’ Compensation System Investigation
ABC Workers’ Compensation System Investigation

Blog, system, Work / System, Workcover

ABC Workers’ Compensation System Investigation

By Soula Mantalvanos|2019-05-17T14:09:07+10:00May 17th, 2019|Blog, system, Work / System, Workcover|

(Image: 2012 investigator’s photo, read the full post here) ABC investigative journalist, Pat McGrath is looking into the experiences of people who have been through the workers’ compensation system – and those who are still going through it. I recently [...]

0

Pudendal Neuralgia Online Patient Conference May 1

By Soula Mantalvanos|2019-05-01T20:14:35+10:00May 1st, 2019|Learn, Professional Resources|

A virtual event not to be missed! Date, Time & Cost Wed, May 1, 2019, 9:00 AM Cost: $25 – $50 Description The Pudendal Neuralgia Online Patient Conference is a virtual event that will be available online as of May [...]

0

John Quintner: A Follow up Interview

By Soula Mantalvanos|2019-03-10T12:13:52+11:00March 10th, 2019|Learn, Professional Resources, Read|

A few months before I decided to ease on the advocacy, I contacted my dear friend Dr John Quintner asking him if he was up for a followup interview. Ever willing to help and share his research and knowledge, John [...]

2

Soula's Chronic Pelvic Pain Story

About Soula Mantalvanos

It’s Been a While… So How am I?

Gnawing, aching, pain in the butt feeling

Hello. I’m back!

«Χρόνιος πόνος: η ύπουλη ασθένεια που κλέβει τη ζωή χιλιάδων ανθρώπων»

Insurer Request: Your Full Clinical File Please!

A national plan for better pain management (we hope!)

ABC Workers’ Compensation System Investigation