Excerpt from soula.com.au/blog September 22nd, 2013 I’m having a great and most satisfying time with this self-portrait. From scouring for different pieces of paper, to painting my own, [...]
It's been a while since I posted a personal update but it's probably accurate to say that PN's weather patterns need to be documented seasonally. I mostly have turbulence, like it's sunny one day/stormy the next, or otherwise described as I take two steps forward and about 1.9 steps back. It's incredibly frustrating. So rather than report all the fluctuating details in between, it's best to leave some months go by to really figure out the progress. So now, the months have gone by and I can deliver to you, Soula's PN weather update for September 21, 2013.
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.
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!'
I struggle hearing about people’s pain since my own experience with it. In trying to do my bit to help, I’ve found the world of pain provides [...]
Another year gone by since the pop! Now I know what practitioners mean about peeling onion layers. My onion layers have gone something like this: Removal of pelvic thickened ligament Peripheral stimulation [...]
Well it's hardly a birthday celebration! But certainly a time to reflect and assess myself and the achievements of PudendalNerve.com.au. The total visits in 12 months total an astounding 21,500 and the search terms are a clear indication that still, so little is understood of Pudendal Neuralgia worldwide. The first note must be of thanks and of course, has to go to my husband Theo. Without Theo's daily help this site simply wouldn't be up and running.... neither would I! Second note worthy thank you, and certainly something that can be celebrated, has to be the beautiful connections I've made in the past year. I've met the most inspiring, energising, kind, compassionate people, whether practitioners, therapists, chronic pain sufferers, or people attached to the pain system, you have been my encouragement and empathy. Your pain and/or knowledge inspire me to continue and get to the bottom of this dreaded pain issue (in the hope of resolving it not only for me but for all of us!), and/or try to voice my improvements for an ignorant WorkCover system. As far as my personal 1st year status goes, I definitely have 'progress' to celebrate; I'm running on Nerve block no. 3, refreshing my pelvis as required with a newly installed bidet, taking minimal amounts of Endep, in much less pain but still much limited with capacity and in need of daily help. Although I still need regular massage, I'm able to work a little from an accommodating home setup, thinking a lot more, delegating-delegating-delegating and finally, but not least, have taken a plunge into the wonderful world of Chinese Medicine which I believe may finally be able to reach my pain. Stay tuned for another update on that soon. (image) Nerve Block Cake & Candle To sum up, here are some stats that may be of interest to my subscribers and visitors (and my very loyal spies!).
Happy... post nerve block No. 3. I'm at 5.3 weeks and have managed to walk daily a few days in a row, practice some extremely mild yoga and have a few meals out without the pathetic fire warning in my pelvis. Could it be? Could it really be? Here's hoping 2013 begins with some pain free magic. Right now, I feel like this... and I wish that everyone who comes across my website, or is a regular reader feels the same. If not, please, remain hopeful.
