(Article from Desktop Magazine’s feature article: Creative Practice and Pain Management)Written by Soula MantalvanosOrigin of Image is a multidisciplinary design studio based in Collingwood that is managed by professional and personal partners, [...]
(excerpt from ...chronicpainaustralia.org.au) Australia's THIRD National Pain Week. People in pain a national health priority! This year we are also building on the petition started last year. Pharmacies and Libraries will have [...]
...I'll clarify now, this post is a very positive one. It's about standing up, facing the world which requires courage, strength, being understood, supported, alot of struggle, and a damn load of management skills. ... not only did Lucy Feagins share our creativity on her brilliant blog, but her address and understanding of our space and lives couldn't have been more spot on or more supportive of PN. It puzzled me that Lucy could understand it when others struggle so much. ... I want judgement to stop. People in pain shouldn't have to say more than 'I suffer chronic pain'. It's harmful and prevents people in pain from going out when they're feeling ok, or rather when they can withstand their pain. If their houses are really tidy, that means they have help. If you see them socialising in one place, doesn't mean they can make it to the next. We are able to smile, we can move, we can walk, we can stand, just not alot. We don't hunch, in fact our practitioners teach us to have great posture, we might sit funny, walk slow, not carry much, and stare as you may you won't see our pain. If we appear somewhere and look great, we planned for that and it took alot of sacrifice and help. If you have doubts, keep them to yourself please because there's no doubt in our mind we're in pain.
I was walking to my studio from where I had a clear view to the sky through our balcony doors when the largest strike and thunder occured that honestly seemed like it had come through the doors and landed on our kitchen bench a few centimetres away from me. I flinched, sort of ducked in some auto response and next thing I knew I was on my knees and had fallen to the ground. My legs were so weak Theo had to lift me off the floor and we made it to the couch where I chilled, a little terrified for a while. At that point I couldn't piece together what had happened, even now I'm not sure it was all so quick, but the fact remains, I landed somehow on my knees with the back of my legs feeling like jelly unable to stand me up.
I've lived here in Delaware since December 2011 and have not had a block since. I already had 6 Pudendal Nerve blocks and this after so many other procedures: 5 Ganglion Blocks, 6 Caudal Blocks, 2 Botox injections, 2 Radio Frequency Ablations, 2 Neurostimulator Trials, an Interstim Impant, and then the 6 Pudendal Nerve blocks. Endless research and finally putting the right two words together on Google, opened up the world of Pudendal Neuralgia (Neuropathy) to us. That was near the end of December 2010. On the day after New Years and in response to two letters I sent to two Dr's names I had found, I got calls from both Dr’s the same day.
Before I get into PN versus PNE, I want to first give you a brief explanation of the physiology of the pudendal nerve and the diagnosis of PN. The pudendal nerve is a large nerve that arises from the S2, S3, and S4 nerve roots in the sacrum, and divides into three branches—the inferior rectal nerve, the perineal branch, and the dorsal clitoral/penile branch. The nerve travels a tortuous course through the pelvis to innervate: • the majority of the pelvic floor muscles, • the perineum, • the perianal area, • the distal third of the urethra • part of the anal canal • the skin of the vulva, the clitoris, portions of the labia in women, • and the penis and scrotum in men. The pudendal nerve travels a torturous course through the pelvis. Patients with PN can have tingling, stabbing, and/or shooting pain anywhere in the territory of the nerve. Symptoms include vulvar or penile pain, perineal pain, anal pain, clitoral pain, and pain at the ischial tuberosities as well as pain with bowel movements, urination, and orgasm.
You can all imagine why The Scheme Project caught my attention and you can all understand why my pledge was not only made in seconds it was supported (and increased) by my husband Theo who equally saw the benefits in Kris's project. As frustrating as it is being left without any income and medical support after my workplace accident and having my fair share of rants to expose, I actually appreciated Kris's professional approach to his project and his intent to make the documentary up front but not personal. He's not looking for tantrums, witch hunts, singling out of fraudsters and unethical behaviour but rather aiming at exposing the realities in hope of making a change. At the end of our conversation we both agreed that life's great knowledge of 'health first' doesn't seem to be part of WorkCover's culture. The support just isn't there, not in treatment, not in standards, not financially and certainly not in return to work. What does Kris need? Your signatures and your pledge (pledges are not collected unless Kris reaches his target). 'You' may be an injured worker, family member of an injured worker or employer, a treating practitioner, medical examiner, conciliator, lawyer, investigator, WorkSafe agent staff member, Minister, anyone associated with the WorkCover system in fact any worker or employer, we all deserve better quality protection.
We don't usually love media, but a little attention after some lengthy hibernation from work was bound to be very valuable for our (Theo's and my) 12 or so year old business, Origin of Image. The lovely Sunday Style (Herald Sun) offered an interview in their 'My_Space' feature... hmmm, quite funny for us as there's nothing 'my' about 'our' life. We share work, living, we even share Pudendal Neuralgia (PN). However this media attention and the snap of me in Sunday's weekend paper had me staring at my portrait (thank you Marija Ivkovic) with curiousity at that captured second of my able life. I looked incredibly independent, active, like I was working full-time and like the issue I confessed to was clearly easy to live with. We are all judged on our facade... and although it was stated in the article that I have PN, I often wonder: can it (or any other invisible issue) ever be understood by my friends, family or community at a glance? The answer is obviously 'no'. I myself battle to understand this conflicting issue with its high sensitivity, on/off maddening, screaming and confusing signals and failing functions, and that's no surprise because even I can't see it! Theo puts it well, "I can't understand Pudendal Neuralgia but I believe Soula".
I had tried to paint myself in pain but it was deeply upsetting. It would have also been concrete documentation - forever - and that's the last thing I wanted to do with this pain. Immortalise it. The pain wasn't staying. It wasn't forever, and there was no way I was going to make it mine. My artwork takes me to happy places, but of course I couldn't ignore these years of my life.
Closure really is something. Feeling like a niggling concern is finally put to rest can be so satisfying, it brings me such calm. Slowly, my pelvic chronic pain niggles are finding their place and providing me with the peace my body and mind needs so I can let go, move on and most of all feel my injury is clearly understood. I had another session with the wonderful Raffaele who continues to treat me fortnightly. I was ready to call the next nerve block last week but after yesterday I'm hopeful again and thinking I was in some kind of a flare. I can't expect (but I will!) that with my effective management flare ups will cease to happen. As I test my capacity and lift my full litres of milk occasionally, walk the dog and go out more often, I've got to expect at some point the body is going to say, 'hang on love, you're lifting too much milk!'
