I feel like switching the 'anniversary' thingy to a 'birthday.' I know it sounds oddly celebratory, but I also know that you have read stranger things on this website so remain unafraid to explore this latest idea with you.
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.
...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 was active, I had capacity, boundless energy to execute my creative thoughts (and meet the expectations of a full social calendar!). I worked veeeeery long and wonderful days, I walked everywhere, lunching, dining, starting every day at a local cafe, picking up art materials, walking the dog, running the dog, to Carlton, the city, Fitzroy, I skipped through the streets of the great arrondissements of Paris when on annual holidays, and swore by my four day a week yoga routine that unravelled my body and had me feeling like Gumby warm to the ends of my extremities... There was no 'tired', 'sore', 'fatigued', 'have to rest', there was no 'pain'. Like I said, it was bliss.
Chronic pain is a waste of life’s precious time, its a huge hold up. But if you have to deal with it then you have to find a way to cope through the awful journey and survive it. Before my precious implant (Professor Teddy I love you!!), I couldn’t move much without pain, everything hurt and it hurt all the time. And yet, my gorgeous friends and family kept telling me ‘but you look so good for someone who’s in pain all day!’ (Uum… thanks??).
When your signals don't function properly you have to come up with new systems to get through the day. This is one I found very useful, it goes something like this: Don't forget to wee!
My creativity has been one of my main coping mechanisms through my chronic pain life. It's the place I go to feel free, release the steam, express my pain, and to get distracted to the point of pain! But it's worth it every time. There isn't a lot I can achieve with my capacity so one drawing, one painting over months, one post on my blog... anything, it's all worth it.
How many definitions for pain signals are out there? It doesn't stop and I have to be really honest here, it all sounds like hogwash for a person who was unstoppable and prior to her injury had the stamina of a bull (as a friend once described me).
It felt like a miracle and took all of about 15 minutes for the phsyiotherapist (at the chronic pelvic pain clinic at the Women's here in Melbourne Australia) to give me her French infused explanation that my pain was most probably coming from my Pudendal Nerve (yes, a name, I had a name!). It took another 15mins for her to put me in on my back (I never lay on my back as it was too painful) and apply a pressure/postural technique that switched my pain off! (Yes, OFF... calm, silence, stillness, roar gone, no spasm, quiet, peace)... unbelievable but this is true.
The most supported I've felt is when I've come across a practitioner who listens and wants to work with me specifically. I mean really take note of what's going on and [...]
