It’s finally filtering through my brain: It’s going to be VERY hard work most days and it’s up to me to keep my butt in gear and stay on the treatment and management trail.
You’ll all be getting sick of reading my badger about this, but the research is out. Patient experiences have been in the making (for decades now), and the biggest sign that the hard work is cut out for people with chronic pain comes from the many who are now drug dependent with either increasing levels of pain or who sadly have lost their lives – not from the medication – but from the battle.
I get sick of filtering through paragraphs and words and med talk that I don’t quite understand (not to mention the pain levels soar for some peculiar reason) and as an artist, I still find it really difficult to present my pain experience to my readers, family and friends in a simple form.
I can’t stand TV as it hurts to sit or lie back and watch but recently, while tuning in to one of the very few shows I do watch, I caught a message from a Pharmaceutical (Pharma) advertisement about pain medication.
It made me think about my personal situation and about my two ageing mothers who are in daily pain – both drug dependent and waiting for a pill to pop out of the sky and into their weekly pill box to ‘make them better’.
It made me think about the way they’re currently trying to dodge the countless darts from the ageing process that are coming at them thick and fast – one striking occasionally, that they still somehow manage to catch and quickly tuck under a very thick carpet.
Our transition began over a year ago when we escaped to Tasmania to figure out how to manage life with chronic pain.
It was the best thing we did even though terrifying at the time.
In just over a year, we have spent four months in Tasmania, returned to our dear Collingwood, sold our warehouse sanctuary, removed ourselves from our main business (as it was impossible for me to do the previous design work), planned a new lifestyle, and began a new venture with the utmost faith and backing of some very dear arty friends and some special few design clients.
It’s taken almost 9 years but I’ve realised that chronic pain requires alot of study – dare I say never-ending study? I believe my research for pain relief for chronic pain may be paving the way for a thesis!
I’ve had a good chat and stare with myself in the mirror, allowed the gut feeling to sink (for just a few seconds), called on gratitude, and here I present to you (with a backside that will soon be comparable in value to Jlo’s) another section of Soula’s Pain Management thesis.
Let’s call it Chapter 4 (approx.)
Patient: Soula (me) Age: 46 (& a few days) Chronic pain since: Mar/07 Injury: Drop to concrete floor from
I know that living with pain for over eight years reduces confidence and belief. It even (warning, I’m going to use the C word), discourages hope for a cure. But how could I have assumed I found my best self for four years (nearly five actually, gulp!)?
There have been many times during my years of chronic pain where I wondered, ‘Why didn’t I know that?’. Usually, the information is quite basic and I feel as though I’ve been deprived by never knowing something so crucial and important about my own body.
I was asked to view and give feedback before this thorough resource was released, and a few times, throughout the 284 minutes of run time, I asked myself, ‘Why didn’t I know that?’.
This DVD isn’t just about managing pain, but rather a clear and concise resource for females… It should be put on some International educational agenda. (more…)
So someone got talking to someone on a plane (you know how that story goes, your eyes begin to glaze over because you’re in pain thinking ‘if this friend tells me I need to meet someone and sustain a new friendship, I’m going to punch him’ – but in the end, it works out that you wished you had sat next to that someone on the plane, and you meet that person and you wished you had met them a very long time ago (like eight years ago for me).
And neither does repeating, ‘it burns’, ‘it itches’, ‘it’s like fire’, ‘I get spasms’, or the various other words people in pain have to repeat for each consult in the effort to be understood.
Pain Train’s whole purpose is to help patients and their pain management teams communicate beyond these basic words. Pain Train saves the patient the additional pain of having to repeat their history and other related details at each appointment.
Who would have thought that pain and the design process would have found a way to merge in my life. Design is however all about communication, and being a creative communicator I got wondering about how one can document their pain journey.
I also believe from my experience with chronic pain that the area is poorly provided when it comes to expression and language. How is it possible for a patient to describe their situation when their situation has no current definition or current way to be described?
So I thought of a concept! I called it Pain Train and two wonderful things were conceived from it. My soon to be publicised online resource, and a brilliant research paper by John Quintner and Melanie Galbraith.
Pain professionals, John and Melanie, are Pain Train’s first conductors and they have applied their exceptional chronic pain knowledge to the concept with their research paper, This Train is Bound for… Wholeville: A Travel Guide for the Perplexed (download or read below).
John Quintner and Melanie Galbraith are aiming to give people in pain sufficient knowledge so that they can meaningfully engage with their respective health care professionals.
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What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks.
Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggrevated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.