Repost from Soula: I Turned a Corner

(Original post on Soula’s blog pudendalnerve.com.au, I Turned a Corner)

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 Continue reading “Repost from Soula: I Turned a Corner”

Pain Train VICDOC: ‘Time-saving tool for managing chronic pain’

Current edition of VICDOC available via the AMA Victoria website

Time-saving tool for managing chronic pain

Written by Kate James

‘While one in five Australians experience chronic pain (and one in three over 65 years), the National Pain Strategy indicates that many health professionals have limited training in pain management. There is a shortage of pain clinics, public waiting lists are on average two years’ long, and it’s often left to GPs to manage complex conditions in short appointments.’ Continue reading “Pain Train VICDOC: ‘Time-saving tool for managing chronic pain’”

Pain Train – think of it as a patient CV

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”

How Our Founder Used PT at her Recent Appointment

(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”

Takes more than an app to explain pain

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”

Tame the Beast

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”

Encouraging Self Management

(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”