[fusion_builder_container hundred_percent="no" equal_height_columns="no" menu_anchor="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" class="" id="" background_color="" background_image="" background_position="center center" background_repeat="no-repeat" fade="no" background_parallax="none" parallax_speed="0.3" video_mp4="" video_webm="" video_ogv="" video_url="" video_aspect_ratio="16:9" video_loop="yes" video_mute="yes" overlay_color="" video_preview_image="" border_size="" border_color="" border_style="solid" padding_top="" padding_bottom="" padding_left="" padding_right=""][fusion_builder_row][fusion_builder_column type="1_1" layout="1_1" background_position="left top" background_color="" border_size="" border_color="" border_style="solid" border_position="all" spacing="yes" background_image="" background_repeat="no-repeat" padding_top="" padding_right="" padding_bottom="" padding_left="" margin_top="0px" margin_bottom="0px" class="" id="" animation_type="" animation_speed="0.3" animation_direction="left" hide_on_mobile="small-visibility,medium-visibility,large-visibility" center_content="no" last="no" min_height="" hover_type="none" link=""][fusion_text] Theo and I continue to establish our new life in Queenscliff and are enjoying the many wonderful new aspects of our new lifestyle. We're also learning to manage the sacrifices. It makes me feel I've turned a corner. Home, then A couple of weeks ago, I actually did turn a corner. After staying in Melbourne for a special family lunch, during the evening we also managed to catch up with old friends on our old pavement. I kind of felt a little emotional pang when I turned into the city end of Gertrude Street and saw the magnolias enjoying the Autumn evening light and the little drizzle that was beginning. Very steadily pacing my drinks, the night saw us hop around our old favorite spots. The life turn happened when I stepped out of the Everleigh and instead of turning right to head 'home', Theo and I turned left to head to a city hotel. We were going to sleep at this hotel, wake up in the morning and return to Queenscliff. Theo had to work... Sunday. I don't often have overwhelming emotional moments. I really deal with life's activities quite well. I mean, who would I think I was expecting a perfect life run, right? 'Suck it up!' But this was one of those overwhelming emotional moments and it was damn hard. I knew what it was. I recognised it as the overdue moment when I finally comprehended life had moved us on... away from 'home'. It finally caught up with me. I lapped up every step away from my previous home as the rain fell on/off and the concrete took in all the glittery, yellow, autumn Melbourne evening lights. I bid abiento to each magnolia as I walked up the street. I also lapped up the arms that were around me and the huge hug that Theo and I stopped to have to mark our moment. Home, now When we arrived 'home' the next morning, our little church made my heart sing. As hard as our unplanned life change was, it was after yesterday's moment and the next morning's moment when I felt we made the right life change for our circumstances. Moving on So, being the committed, suck-it-up kind of human that I am, I got straight onto my next job – I made a new PainTrain health summary . After all, I was in my next stage of life, right? I totally feel, that now... only now, am I actually in the state of managing. My head is finally above water and not bobbing above and below water, with my brain in a – you're not going make it /you're going to make it – state. Given you all know alot about my life (and that I'm confident enough after winning a few insurer battles that they can kiss my two implants), I'm happy to pop up my personal health summary and show you what I've done. [/fusion_text][fusion_text] [embed]https://pudendalnerve.com.au/website/wp-content/uploads/2018/05/Soulas%20Health%20Summaries.mp4[/embed] [/fusion_text][fusion_text] There's a huge psych component to PainTrain but I don't have the credentials to officially explain it which is why I had to hire User Experience help. Having said the above, from my combined branding/ design and patient experience, I feel these aspects of PainTrain should carry a bit of 'official' evidence because afterall, our patient experiences are so totally valid. These things happened after I made my '2018' health summary: I felt organised(in my highly unpredictable world! I feel smart and independent (that's so important to me) I have taken action to put the trauma of this past 11 years behind me The physical action of 'doing something' is vital, feels cathartic and provides me a sense of relief After completing the health summary and sending it to my specialist, I feel the reward of having moved, progressed, conquered! After receiving my pain specialist's brief 'thumbs up' response I feel immensely understood and supported I didn't need an appointment I saved my appointment money I saved my capacity going in to an appointment Swiftly documenting my achievements, my new symptoms and observations helps me file them out of my head so my stress is reduced I know I always have one single, private place for my important details I won't forget any of my important details Flicking between my old health summary and my new one feeeeels sooooo goooooood! There are so many more reasons why I love this management process but I think my most valuable thing about my PainTrain health summary (summaries now!), is that they communicate MY unique story and give me a voice. In 11 years, there's been no other way to put my health summary together like this and further still, be able to pass the info on without saying a word! Are you on PainTrain ? I'd love your feedback. [/fusion_text][/fusion_builder_column][/fusion_builder_row][/fusion_builder_container]

(Cut to the chase, I want to support the Pain Revolution 2018. Image: Lorimer and Soula at the Pelvic Pain Foundation of Australia Melbourne launch) I've got a soft spot for Professor Lorimer Moseley . In Feb 2011 I had just had the peripheral stimulation implant op and was slowly emerging from my darkest days. Alone at home while Theo started a new full time job and staring at our shut down graphic design business I was still unable to do very much at all but I listened to the radio and that was where I first heard Lorimer speaking. He was on Margaret Throsby's show on ABC Classic FM . I heard Lorimer explain chronic pain and the brain before coming to the conclusion that he was mad and switching off the radio. I was angry that this professional was saying that my brain was really good at learning bad things and that my brain did that in the same way – and as well as it could learn good things. As we now know, Lorimer was right and I'm still angry... but angry at my brain! A little while later, I read The Brain that Changes Itself and it referenced Lorimer's mirror theory work. After trekking the steep and confusing specialist trail collecting variations of the statement, 'you're a complex case', I decided to write to Lorimer - I had no idea what else to do with myself. I wrote a few paragraphs saying I would greatly appreciate any advice and also offered my brain to his research (I was seeking to be somehow useful!). Lorimer replied and within a month of his reply I was diagnosed by a physician who closely follows his research (who was a physiotherapist and who worked in the general public system... go figure!). Everything began to change for the better from this point. That was 4.5 years after my injury. I will be ever grateful. I'm still no less angry with my brain's intellectual ability to be super dumb - or rather super protective as I now know but since my diagnosis I became inspired to give back. I wouldn't be a very good advocate if I didn't follow the leading researchers (I'd be in alot more pain as well!). Having remained glued to Lorimer, I've also glued myself to the organisations and groups Lorimer is also glued to: Body in Mind , NoiGroup, UniSA , and the Pain Revolution . My life experiences (creative and pain related) with the research I've read to date are the factors now contributing to my better quality of life, to the better self management of my chronic health issue and to my founding Pain Train . If my online health summarising resource is going to be able to help people like you and I, it needs to step up and chug alongside these movers and shakers (and what an honor that they're happy to have Pain Train chug along with them!). So, we're now signed up and Pain Train is officially an ambassador for this year's Pain Revolution and committed to raising $1,000 in the name of pain research! ANY amount you donate makes a difference to pain research... and that means it makes a huge difference to ME! Think riding a bike from Sydney to Albury-Wodonga is tough? It’s hard work, but probably not as hard as living with persisting pain. We have a really big problem with persisting pain It is Australia’s most costly health problem It is the most common reason for early retirement It is most common in the bush 1 in 5 Aussies are suffering right now Research & resources are desperately needed We need to completely RETHINK persisting pain. We need to RE-ENGAGE with this massive problem, and give people resources to RECOVER . We need a REVOLUTION! What is the Pain Revolution? The Pain Revolution is a 7 day cycle tour from 11-18th April 2018, led by some of Australian’s leading pain scientists and clinicians. They are taking on their own physical challenge, riding their bikes from Sydney to Albury-Wodonga. More: painrevolution.org Exactly who gets the donation and where do the funds go? By making a donation to the University of South Australia in support of Pain Revolution , you are helping us to raise desperately needed funds to support the development of accessible, community-based pain education programs for people living with persisting pain. Yes! To the Pain Revolution, so I can Donate! [fusion_button link="https://painrevolution2018.everydayhero.com/au/pain-train" title="" target="_self" link_attributes="" alignment="center" modal="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" class="" id="" color="orange" 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="0" size="medium" stretch="yes" shape="pill" icon="fa-hand-o-right" icon_position="left" icon_divider="no" animation_type="" animation_direction="left" animation_speed="0.3" animation_offset=""]Donate[/fusion_button]

Pain Train | pudendalnerve.com.au

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

Spinal Cord Stim Trial Day 6
Spinal Cord Stim Trial Day 6

About, Learn, My treatment, Professional Resources

Spinal Cord Stim Trial Day 6

By Soula Mantalvanos|2018-12-13T12:45:01+11:00December 13th, 2018|About, Learn, My treatment, Professional Resources|

I'm not exactly enthused about health admin. There's already enough admin and digital filing to do in life. But I've found that my PT health summary is saving me, not only admin time, but alot of stress having to remember details of my experience. I've included a self portrait for my specialist today!

2

Pain Revolution Names PainTrain a ‘Best Resource’
Pain Revolution Names PainTrain a ‘Best Resource’

Blog, Help, Manage, Pain Train

Pain Revolution Names PainTrain a ‘Best Resource’

By Soula Mantalvanos|2018-07-22T14:33:23+10:00July 22nd, 2018|Blog, Help, Manage, Pain Train|

PainTrain has followed Pain Revolution very closely over the years and its this research with Soula's experience that has driven the PainTrain concept. We love having your support all the way Soula! Your voice is so needed and loved, and your [...]

0

My Health Record vs PainTrain My Health Summary
My Health Record vs PainTrain My Health Summary

Help, Manage, Pain Train

My Health Record vs PainTrain My Health Summary

By Soula Mantalvanos|2018-07-22T14:06:28+10:00July 22nd, 2018|Help, Manage, Pain Train|

Um, actually, they aren't in competition. They are two very different online resources. There's no turning a blind eye or choosing to stay away from this technology change as it is affecting you right now and there is a decision you need to make within three months about your autogenerated account on My Health Record. Are you staying in or opting out? I opted out. And not because I think My Health Record is a poor concept – it's a great idea! Remember I've made a type of online health summarising resource myself because I realise how important it is to organise your health information and communicate more efficiently with your health team/s.

5

I Turned a Corner
I Turned a Corner

About, Blog, Learn, My treatment, Personal resources

I Turned a Corner

By Soula Mantalvanos|2018-06-03T11:07:03+10:00May 27th, 2018|About, Blog, Learn, My treatment, Personal resources|

Theo and I continue to establish our new life in Queenscliff and are enjoying the many wonderful new aspects of our new lifestyle. We're also learning to manage the sacrifices. It makes me feel I've turned a corner. Home Then Actually, a couple of weeks ago, I literally did turn a corner. After staying in Melbourne for a special family lunch, during the evening we also managed to catch up with old friends on our old pavement. I kind of felt a little emotional pang when I turned into the city end of Gertrude Street and saw the magnolias enjoying the Autumn evening light and the little drizzle that was beginning. Very steadily pacing my drinks, the night saw us hop around our old favorite spots. The life turn happened when I stepped out of the Everleigh and instead of turning right to head 'home', Theo and I turned left to head to a city hotel. We were going to sleep at this hotel, wake up in the morning and return to Queenscliff. Theo had to work... Sunday. I don't often have overwhelming emotional moments. I really deal with life's activities quite well. I mean, who would I think I was expecting a perfect life run, right? 'Suck it up!' But this was one of those overwhelming emotional moments and it was damn hard. I knew what it was. I knew that overdue moment since we left 'home' had finally caught up with me. I fully comprehended that we had said goodbye, and life had moved us on. I lapped up every step away from my previous home as the rain fell on/off and the concrete took in all the glittery, yellow, autumn Melbourne evening lights. I bid abiento to each magnolia as I walked up the street. I also lapped up the arms that were around me and the huge hug that Theo and I stopped to have to mark our moment. Home Now

2

Pain Revolution 2018
Pain Revolution 2018

Advocacy, Blog, Online

Pain Revolution 2018

By Soula Mantalvanos|2018-01-20T16:14:59+11:00January 20th, 2018|Advocacy, Blog, Online|

(Cut to the chase, I want to support the Pain Revolution 2018. Image: Lorimer and Soula at the Pelvic Pain Foundation of Australia Melbourne launch) I’ve got a soft spot for Professor Lorimer Moseley. In Feb 2011 I had just [...]

1

Pain Train – think of it as a CV
Pain Train – think of it as a CV

Help, Pain Train

Pain Train – think of it as a CV

By Soula Mantalvanos|2017-12-17T13:01:41+11:00December 17th, 2017|Help, Pain Train|

Judging by my own measures (hope you don’t mind me taking a stab here), whether you’re a professional or a patient you wouldn’t be thinking that it’s up to you to invite this new Pain Train language into your relationship. [...]

0

Chugging Around the Globe
Chugging Around the Globe

Learn, Pain Train, Professional Resources

Chugging Around the Globe

By Soula Mantalvanos|2017-12-17T12:37:26+11:00December 1st, 2017|Learn, Pain Train, Professional Resources|

I’ve met some exceptional people online who have helped educate me about chronic pain and helped with my pain management. I don’t hesitate to write and connect with people but only if I have a question that I haven’t been [...]

1

Takes more than an app to explain pain
Takes more than an app to explain pain

Blog, Learn, Pain Train, Professional Resources

Takes more than an app to explain pain

By Soula Mantalvanos|2017-12-17T12:37:25+11:00September 2nd, 2017|Blog, Learn, Pain Train, Professional Resources|

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 [...]

0

Video: Why I Made Pain Train
Video: Why I Made Pain Train

About, Help, My treatment, Pain Train, Personal

Video: Why I Made Pain Train

By Soula Mantalvanos|2017-12-17T12:37:25+11:00August 14th, 2017|About, Help, My treatment, Pain Train, Personal|

Soula shares her frustration with pain management and how it lead her to founding Pain Train. In this short video Soula also provides her insight on how people experience pain as well as the personal difficulties she faced communicating her [...]

0