With Pudendal Neuralgia, or any other pelvic chronic pain issue, it can be impossible to sit pain free (let alone get away without a flare up). Of course, I'm no pro when it comes to seating, but I've learned a lot from my own experience and from listening to the 'ouch' in my pelvis. The seating I needed, was most often hand-made! (Have a look at the one my gorgeous father in law made, it's the stool with adjustable foot rest!) Although I've worn out, thrown out, tried and tested so many more seating aids, I'm showing the ones that have lasted or worked for a while. These are the ones I often resort to.
"I've got to get to work, it might have been work... I have to get to Swanson Street... I sell The Big Issue". Yes, you read right... and to top it off I was kindly informed, in just a few stops, that I could buy a calendar too! I couldn't help myself, I asked, "Are you trying to sell me something on the tram?" We all laughed.
The condition and existing barriers to management and practice My understanding of a 'syndrome' is that it seems to remain myth-like until serious research is undertaken and repeatedly produces the same findings in many patients. The Research for Pudendal Neuralgia is minimal worldwide, almost non-existent in Australia. Although specialists and therapists are documenting their work Pudendal Neuralgia can't seem to penetrate its existence in Western Medicine's Bible, and so it is unrecognised, misunderstood or ignored. So when my physiotherapist at The Women's Hospital mentioned Alesha Sayner and I heard she was compiling a presentation for her Masters specifically about Pudendal Neuralgia, I jumped at the opportunity to hand over all my experience knowing this is exactly what the issue desperately needed. I was even more enthusiastic that Alesha was interested in documenting WorkCover's understanding (not) and treatment (not) for injured worker's with the issue. Thank you Alesha Sayner and The Women's Hospital for this huge first step, so crucial to Australian sufferers of Pudendal Neuralgia, such therapy for me too!
...I feel I'm exercising my brain when I read an article that sparks more thought and leads me on a hunt for more and more information and the process all results in gold! It might not necessarily be what I was looking for but a lovely surprise nevertheless... It made me think about another possible cure for my issue (I know, very far-fetched but imagine if my brain could be programmed to make me live/dream all the activities my pudendal nerve won't let me do by night?! Imagine?!). So I went to my favorite, most trusting online resource, no, not Google, Body In Mind...
You can't beat it, don't even try and argue with me on this one. The toilet is most certainly THE best seat in the house (well my house for sure, actually come to think of it, any house or place I go to).
Absolutely nothing great about having to live by these rules but it certainly saves me alot of extra pain, I have more up time and, above all, I decided this is just temporary. I'll do what it takes to get by most comfortably (if I can dare to use such a word for a chronic pain site!): •I understand that everything I do counts, even a sneeze (ok they count alot!) so I make sure I pick and choose what I do •I learned and practice the word pace •I'm more selfish •I say "I can't" and recently I've even stopped apologising because "I can't"! •I let go of obligation (actually I need to work on that one) •Keep any visit short, close, soft (not too many parties unless you can walk away) •I email my WorkSafe case manager to eliminate hearing all unnecessary hogwash •I have a daybed and made a 'dayspace' no where near a television or my bedroom •I have a dog, he's one of my biggest aids
avulsion The forcible tearing away of a body part by trauma or surgery chronic A chronic condition is continuous or persistent over an extended period of time. A chronic condition is one that is long-standing, not easily or quickly resolved [...]
...I developed my own pain score which I'm sure when read by anyone without neuropathic pain, will be enough to convince them I'm mad and in fact I must have fallen on my head not my backside. But this site isn't for those people, (go off and play... you don't need to be here and good luck to you).
I often don't feel like talking or explaining the same boring chronic pain story over and over. And I'm thinking there may be a few people out there who feel the same. So, here's some artwork for you folks. Feel free to use it to order caps, t shirts, mugs, honestly, do whatever you want with it, just don't take my name off or manipulate the artwork. Oh, and pop me a message of thanks. Perhaps even come back with some images and I'll create a pain gallery!!!
Mr. Collen said the main goal of the exhibit is to raise awareness about the problem of chronic pain. However, he said he hopes one day to find a sponsor to take the exhibit on tour. “People don’t believe what they can’t see,” Mr. Collen said. “But they see a piece of art an individual created about their pain and everything changes.”