After 4.5 years and desperate, Soula took a stab and emailed Lorimer Moseley who kindly replied and suggested she contact Anne-Florence Plante. Anne-Florence diagnosed Soula instantly.
Melbourne launch March 24, 2015
I was thrilled to be invited to The Pelvic Pain Foundation of Australia (PPFA) Melbourne launch last night. I originally met Dr Susan Evans when I was invited to present my patient story at AIM Pain 2014. I had cyber met Dr Evans prior, asking if I could include her details on this website, in fact I’ve ‘e-met’ many pain professionals this way. I never dreamt that one day they may all be in the one room together, all of us advocating for pelvic pain and helping start up a National organisation that addresses pelvic pain for women AND MEN.
Needless to say, last night I went on a magic carpet ride! Continue Reading
Or is it possible I never really left my reality? As if anyone can leave chronic pain behind and really have time off!
Sensing the cynical? I best write this post two ways. Technically, the permission ends on Thursday night when we head back to Melbourne so I’m going to post my brain’s two conflicting versions:
1. Crap thinking out-of-the-way first version
Pulling yourself out of life isn’t easy and especially if you’re forced to do it. I was forced and that force keeps on damn well forcing. It brought Theo and I to Tasmania for a four-month ‘sabbatical’ with the topic of research being chronic pain and how to live with it. Truth is, the topic has more likely been what the hell do we do now? It was also meant to somehow help me rid some more pain and pace up my driving, exercise and some daily chores. I was unsuccessful. Continue Reading
Last week, I attended my last acupuncture appointment and for the first time in over seven years, am therapist free. Hang on, I have to just repeat that:
I am therapist free
Did I ever think this day would come? Of course I did and I believe that’s why I am here.
I have had my moments, but what I didn’t realise through all that heat and whilst pacing like a snail, was that each flare up and pain episode was actually not an indication that pain was here to stay, but rather that it was actually beginning to leave. Although just a difference of minutes initially, eventually I felt the flare ups spreading further apart. And with recognising that change and NOT increasing my capacity past a snail’s shell weight, I began to make progress. Continue Reading
The post many of you have been waiting for… Theo’s thoughts, sacrifices and life experience of his daily ‘caring’. I should add that Theo and I have been together almost 20 years, seven of those consumed with Pudendal Neuralgia (PN).
What does PN mean to you?
To me PN is a yet to be accepted condition that sufferers are unable to express and be understood for. I do not claim that I understand it/the symptoms but I believe that it is real. I see my wife live with it every day (and night).
How has PN changed your life?
More so it has changed our (Soula’s and mine) lives. Personally however, I feel I have the lucky end of the stick for I am still able-bodied and there to help my wife. Our ‘arguments’ always revolved around who could do more for the other. I guess I have come up on top in that respect, however, having to see Soula in pain takes a lot out of me. Learning to adjust with things like, walking slower, no sudden tickling, no jumping playfully into bed or sitting through a long dinner has taken time. You adjust. It’s the look in Soula’s eyes though that can see me having to adjust that saddens me most. I can’t help but feel that she feels responsible for me having to change my life. I always say to her, “What would you have done…?”
You don’t like yourself being referred to as Soula’s ‘carer’, please explain why.
I care for Soula however, I never consider myself her carer. A carer to me is someone somewhat detached. Soula is my wife, my life! If she were to catch a cold and needed a few days off her feet whilst I made her soup and tea, I would take that as caring for her but not as being her carer. I think this may be a language issue but I wanted to clarify. Continue Reading
It’s my anniversary today. Seven years from the day my (and Theo’s) life changed. I’m heavily considering changing my beliefs… did I break a mirror?
I’m not superstitious, but if it means owning up to breaking a mirror I’d be more than happy to change my views. So long as at 11am today, this Pudendal Neuralgia (PN) issue goes away and my original, very well, non aching body, returns to my hardly affected exterior.
‘But hang on Soula, keep writing, unfold and expand those squally thoughts’, thoughts that flow from positive and grateful, into negative and hopeless, and end up reality checks that tell me, ‘well, you’re making progress‘. This is a mantra in my mind daily and I have to keep reminding myself that the mantra once was simply, ‘you’re getting worse‘. Continue Reading
I thought it might be a little more realistic to post ‘status’ reports as I battle on with PN. Most often I try to be positive and hopeful but the reality is PN is nothing but hardship, sacrifice and loads of pain.
Instead of bombard my website with these status reports I chose to write these on my Facebook page. It also makes it easier for me to provide support in the form of ‘live’ communication. I can keep posts short and they can be posted from the phone more regularly. The website tends to have ‘major’ status updates, I felt I needed to comment about the day-to-day struggles.
To followers who aren’t aware of my FB page I’m posting today’s ‘Reality update: Shopping (if you can call it that)‘ so you can decide if you want to follow these ‘reality posts’. If my memory serves me correctly you won’t need an FB account to see what I post on this page. Continue Reading
I’ve come to another checkpoint, the end of the year always seems to call for a summary and with PN I won’t be summarising any grand bonuses, monumental achievements or any other events that suffice to the amount of days and hours that passed. In fact, the biggest blocks of time go on rest, treatment and wondering if this pain is actually ever going to end.
When I hear ‘festive cheer’ I can’t help but rhyme it with ‘Festive fear’, are you terrified at this time of year? Festivities call us to get out of the safe daily zone, step into marathon entertaining, baking, wrapping, socialising, a time to move away from our therapists and their treatments (Lord knows they need a break!) and jump! It’s impossible not to wonder, how will this end for my pelvis?
I know that sounds negative for someone that managed to finally get back into the studio, made Christmas wrapping (above), who contributed to her design company, who directed Art and Chronic Pain – A Self Portrait, and who wound up planning a documentary to create awareness for the very issue that holds her up day in day out, but, I’m slowly realising although I progress, PN is consuming my life more and more (and Theo’s!). PN has infested into my creativity, it’s become a monster outside my body as well. A monster now guiding me to forget my privacy, suck up the imposition and ego, and play a lead role in the name of PN awareness. How on earth did it come to this? And where on earth is it going? (You won’t believe what’s next!!) PN is truly fixated on me, in me, around me, it’s becoming the PN never-ending story. I can’t help but wonder at times, at what the point did this become my job? Continue Reading
Now here’s something I didn’t see coming, my pain journey being transformed into an educational documentary about Pudendal Neuralgia (PN). And I have to warn you, there won’t be much smiling and hiding of pain if this happens.
One of those strange-but-true occurrences in life found me introduced to handmadefilms.com.au and I now have a unique opportunity to help with my PN message. The intended outcome is to have a documentary film made that will be free for practitioners, therapists and people in pain around the world, and for them to share for educational and therapeutic purposes.
Early diagnosis of PN is crucial for quality of life, in fact if I had been diagnosed sooner, I believe I would not have such a serious life long pain issue now. I want to change this bad life experience into something good… into Pelvic Pain education. I’m hoping you can help me raise some of the production costs.
Watch below and contribute via PayPal. Follow our progress by subscribing to The Hurting Strings feed.
The Hurting Strings, an artist’s story of pain from Soula Mantalvanos on Vimeo.
Absolutely gobsmacked at this achievement, and incredibly confused at the same time. Who would have thought a horrifying life changing event could bring so much reward. Nevertheless, I’m going with it and am stoked to be considered for semi finalist. Self Portrait (art and chronic pain) will be heading up to Sydney next week for the next round confirming finalists for the National prize.
View all the semi finalists here, read more about the prize here and view the 2012 finalists here.
About the portrait
A self portrait of a self portrait. A marionette is the only way I thought to express my living with chronic pain. I lost my independence and yet the debilitating qualities couldn’t be seen on my exterior. No one could grasp my torment by looking at me, in fact I looked ‘well’. I lost my control in life and the pain directed my days for many years… for some days it still does.
This painting of me as a marionette, I believe, is a fitting self portrait of me, perhaps even for anyone else with any kind of invisible pain.
Currently this is how I see myself but I remain hopeful that this image will change one day.
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