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 – 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”

Chugging Around the Globe

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”

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”

How did {Pain}Train originate?

{pain}train logoIt’s true that each of our pain journeys are unique. I must have been asked the following questions at least a gazillion times during my own pain journey:

How did the chronic pain begin, what investigations have you had, did you bring any reports with you, what kind of pain treatments have you tried, how long have you had chronic pain, which Health Care Professionals (HCPs) have you seen, have you taken any pain medication…?

And, I will never forget struggling to answer. That is if I was able to answer due to my fatigue, extreme pain levels, or dulling effects due to pain medication.

So how can a HCP begin to gather the best possible understand of each of their patients unique pain journeys? And how do patients navigate their search for diagnosis and treatment as best they can?pt-journey

In no way is {Pain}Train an assessment tool. As all HCPs know the consultation process itself is of major importance in forming a therapeutic relationship. {Pain}Train is here to help the patient with communication and to document their journey. {Pain}Train creates a private profile that is accessible 24/7 with patient permission. Continue reading “How did {Pain}Train originate?”