Pain Train: Ambassador for the Pain Revolution 2018
(Soula Mantalvanos Jan 19, 2018 pudendalnerve.com.au)
(Cut to the chase, I want to support the Pain Revolution 2018!!!)
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! Continue reading “Pain Train: An Ambassador for the Pain Revolution 2018”
Pain Train – think of it as a patient CV
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.
Would I be right?
You all know my Pain Train scenario – I instigated the use of it in my own pain management and Dr Christelis agrees that it was my job to do that.
I’ll be honest, I don’t really mind which way Pain Train found its way into my pain management because the point of pain management is to try everything until you find something that works.
Pain management, in my experience (and referring to a few of my own measures again) works when a professional and a patient are both active in the search and trial of options. From there, the patient explores some of the options (if not all!) that they feel might be of benefit to them.
Having used Pain Train for a while now and following all the online health record information, I’ve realised Pain Train is actually not a health record resource at all. It’s really a kind of Curriculum Vitae (CV), something a little more personal – thus the new tag line: Continue reading “Pain Train – think of it as a patient CV”
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 able to find the answer for. I am conscious of their time.
I also make contact if I think that I may have some information that could help others with chronic pain and I can’t manage the communication from my patient voice – I reach out to the pros.
Lissanthea Taylor recently wrote a 4 part blog, Calls to Collaborative Care that was published on bodyinmind.org – it was written in my patient language.
Soon after, I saw Lissanthea comment on My Cuppa Jo’s (Joletta Belton)’s FB page (another dear exceptional person whom I met online). Continue reading “Chugging Around the Globe”
(By Soula on pudendalnerve.com.au, My Recent Follow up Appointment)
I’ve had loads of information to process after my recent appointment with pain specialist, Dr Nick Christelis.
To prevent you all from zoning out (and my backside from having a fit), how about I spread my pain management report out a little?
If you’re in a kind of ‘I can’t be bothered, I’m over it’ and ‘don’t want to hear any recommendations or my brain will burst’ state then here’s a special post for you – Diagnosis: A Can of Worms.
And if you didn’t read how I prepared for my appointment please do so here because I’m about to reflect on it: Upcoming Appointment with my Pain Specialist
I’ll also be back to report on how I am going a few months down the track – sooner if something miraculous happens. Continue reading “How Our Founder Used PT at her Recent Appointment”
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 “Takes more than an app to explain pain”
(Excerpt from the Stroke Foundation‘s enableme.org.au webpage on pain management)
Many stroke survivors experience pain. Pain can happen if there is real or potential damage to body tissue. It can also be felt if the nerves have been damaged.’
Continue reading “Stroke Foundation: Enable Me website”
Soula talks about her pain management frustration and why she made Pain Train
Soula shares her understanding of pain management in this short video and provides her insight on how people experience pain as well as the personal difficulties she faced communicating her journey at each appointment.
Filming credit: Digital Storytellers
We couldn’t resist sharing this humorous but realistic animation about chronic pain.
Professor Lorimer Moseley has played a key role in our founder’s pain management. But what we love most about this animation, is the simple way in which it communicates the monstrous chronic pain experience – we agree, it is a beast! Continue reading “Tame the Beast”
She’s also the author of our newest blog post – How One Artist Used Her Hurting Strings To Stitch Back Her Life.
Soula Mantalvanos has been dealing with pelvic pain for over nine years. She’s an aspiring creative living in Australia. An artist who battles Pudendal Neuralgia through her words & artwork. Soula’s a die hard advocate for persistent pelvic pain sufferers. She’s created an online communication tool called Pain Train to help those suffering from pelvic pain feel confident and empowered in managing their own pain journey. Continue reading “Dr Susie Gronski – How One Artist Used Her Hurting Strings To Stitch Back Her Life”
(Written by Soula Mantalvanos, Founder Pain Train)
That’s easier said than done.
When I first had my accident in 2007 and literally landed in chronic pain, the last thing I expected to hear at any appointment was that I had to manage and coordinate my own treatment.
It was confusing when I was asked what treatment I thought would be best for me to try next – wasn’t the professional meant to guide me?
But a decade later I now finally realise that I was driving my pain management and it was in fact my direction and feedback – from my unique pain experience that was making the difference.
Without the patient reporting their exact experience – which we now know is unique – there’s no way to plan or move forward.
I can’t imagine the complexity a professional faces when trying to help a patient who is unable to articulate their pain experience. But I know this is the general scenario and I know this because I experienced the difficulty of remembering, talking, thinking, documenting, reporting and navigating each minute while living with chronic pain. Continue reading “Encouraging Self Management”