A pain recovery journey shared

Many of our followers and other chronic pain sufferers will be aware of Soula’s website.

Soula is an artist, creative director and also a chronic pain sufferer and advocate.

We recently had the opportunity to interview Soula and gain her valuable insights.

We hope you enjoy this blog post and possibly find some useful tips.

APS:        Would you describe your pain recovery journey as having a ‘turning point’?

Soula:     There have been a few turning points but two main ones:

• Firstly when I was implanted with a peripheral stimulation device which restored my ability to read with the much lower pain levels.
• That led, shortly after, to my diagnosis which has been the key to my recovery.

APS:        What 3 things would you rate as your biggest lessons in your pain recovery journey?

Soula:

1. Firstly that my body is first and foremost driving recovery, it just needed the help of appropriate treatment. I initially presumed it was the other way around.
2. That everyone needs a decent explanation of what is causing their pain before they can move on with recovery. In my case that was: the pudendal nerve lives in various levels of an overactive inflammatory state. The why’s, what’s and how’s are secondary information and unique to each person and we may actually never get those answers.
3. That my lifestyle: Theo (husband) and creativity have been my biggest treatments of all.

APS:        Did you participate in any group pain management programs along the way?

Soula:     I was referred to two programs. One was at Epworth where I met Dr Bruce Kinloch. I’ll never forget that appointment, it was one of the few times I felt someone made time and was really listening to me. He was happy with my approach and he felt that I didn’t need to participate in the program. The other program was very disappointing asking me to accept that I would never investigate my pain issue if I was to take part. Obviously I couldn’t do that. At that stage I couldn’t even sit through the four appointments for the application, I had to attend them one per week… It was unthinkable that I would accept the unliveable state I was in and accept that would be ‘me’ forever.

APS:        How much guidance did you receive to establish your own Pain Management team?

Soula:     I feel I was on my own really and I think that is the reality. It is extremely difficult for anyone to help you as they don’t know what you’re experiencing. I tried to learn so much about chronic pain so I could communicate my issue and that is really important for any professional trying to help you. Again this goes back to the first point in the second question where I mention I am the one driving the recovery. I would head back to my GP/specialist and report what I was feeling and together we’d plan the next step. You report on a treatment response and that paves the way for the next stage and on and on that goes. You really want your GP to have a great phone book! Having said that I did find my diagnosing physio through my own research. I had written to Prof Lorimer Moseley after reading about his research in The Brain That Changes Itself. At that stage I asked him how long he thought I could pace up my sitting as I was planning to move away with my husband and focus totally on my recovery. His answer was something like 2 seconds. Thankfully he also advised of a local physiotherapist he knew of. I was diagnosed in about 5 minutes of speaking with her.

APS:        How important are support groups for both you and your close family/community?

Soula:     I can’t say I feel there is much support for my husband and family/community. It’s difficult with invisible pain, it’s a similar scenario with depression, we still don’t get it. Society seems to have been given an immense right to provide their opinion (e.g. with social media platforms) and this has opened up some kind of authority to encourage opinions and much judgment. Not many tread carefully or really think from someone else’s perspective. Although we have more information accessible to us, we seem to be learning less.

Support groups are extremely important and they existed for me. But they didn’t come in one form. They’re not just the organisational kind that offers conversation about personal experiences. They are the friends that arrive on your doorstep with food parcels, the friends that post things to you in the mail to lift your day, the people that help you achieve something you can’t on your own, the people that understand you can’t attend their party. They are your family who’s life has been impacted enormously by your health issue and don’t complain… even the community you gather with locally for a meal/drink who wave to you in the local street and know why you’re walking slowly and don’t carry a handbag. For me there’s also a huge online community. I’ve connected with the most incredibly generous professionals who have helped me understand my pain experience incredibly. Two of whom I’m working with to create a new pain management communication tool for patients and practitioners.

APS:        What messages would you like to share with non pain sufferers to help them understand chronic pain?

Soula:     I don’t expect anyone to understand someone with chronic pain, but I do expect them to believe someone with chronic pain. My husband first said this and it’s perfect.

APS:        Tell us a little more about your “accidental advocacy”?

• What has it meant for you?

Soula:     It is often confusing. Especially when great things come from a pain experience of almost 8 years such as being a sem-finalist in the Doug Moran National Portrait Prize twice!  I’ve also self published a book that I wanted to be a comfort to anyone in pain. I hoped for it to be something to have around for family/friends to use to grasp the experience of being in pain.  Of course now there’s also The Hurting Strings, the documentary which was always intended to be available free thanks to the generosity of Peter Lamont who made it. This is now being used in pain management programs around Australia, in Otago and was also presented at the Pudendal Neuralgia Association’s pain conference in Massachussetts. As a further endorsement, it also recently won the Reel Health International Film Festival Award in the Journey category.

And of course my website  which has had 60k unique visits and becoming a resource in itself. Those stats are actually indicative of how little we know about pelvic pain.

The advocacy is certainly something I didn’t see coming but as a creative communicator, I think looking back it was always to be expected. And besides, what else do you do with pain? No point keeping it to yourself when you can help others. Advocacy also helps me a lot; I feel I’m not experiencing this journey for nothing. Keeps me feeling useful, a part of the world and that I have a message. The expression is also very cathartic.

• Have you been encouraged by changes that have been achieved/implemented?

Soula:     I am very encouraged. I was most impressed when I was asked to present at AIM Pain 2014 earlier this year and was encouraged to tell my personal story in my own words (and even pictures, I had the marionette and artworks on stage). This personal account included a horror experience with medication and my own opinion that Western and Traditional healing worlds need to come together. Theo and I met so many of the practitioners who were eager to hear more about my pain experience. They wanted any information that could help them understand their patients. The final workshop of the weekend was focused on understanding that medication isn’t the answer to pain and that, is very encouraging.

I am also encouraged by John Quintner and Melanie Galbraith who I mentioned I’m collaborating with on a new way of communication for patients and practitioners. The knowledge they share with me makes me feel I’m doing everything I possibly can for chronic pain sufferers. That’s not just for me.

APS:        What’s next for Soula?

Soula:     That is what Theo and I are figuring out on a sabbatical in Tasmania for 4 months. I am finally feeling stable and am practitioner free, so we have come away to digest, reflect and plan our next phase of life knowing my limitations and knowing that we can now look forward to life and plan it. It really takes the both of us to live well with a chronic pain issue; it’s a full-time job of its own.

There is a bit of painting and of course our shared creation and love – our design company ooi. I do need to consider I can’t take on work that has me sitting more than a couple of hours a day so a mix of things I believe will be great. I’m quite interested in art therapy; it’d be a great way to combine all my life skills and creativity whilst helping people in pain. I guess it’s called living again and for me that’s creating and enjoying life with my beautiful partner.

Soula

pudendalnerve.com.au
Watch the documentary, The Hurting Strings
See Soula’s AIM Pain 2014 presentation