My new stim’s changed everything. I’m grateful. Can you imagine if the whole process (from trial to permanent implant) hadn’t change anything? In addition to the stim changing everything, I’m living a whole new life that Theo and I attempted to plan in great detail. We’re trying to make me the best I can be [...]
True! Theo and I made a huge life move as many of you have read. 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, [...]
And I'm most honoured! To be recognised for my pelvic pain advocacy is one very exciting aspect, but to be invited to be part of a committee with a global vision, is quite an additional excitement. It appears my pain experience will definitely make a difference to others.
Permission granted and now it's back to reality! Or is it possible I never really left my reality? As if anyone can leave chronic pain behind and really have time off! I'm going to post my brain's two conflicting versions: 1. Crap thinking out-of-the-way first version..
Or should I say, looking forward to 2015? Looking forward is more my tune but the changeover of another year, especially with chronic pain, calls me to reflect and to ponder my future. It’s been three gorgeous months in nurturing Tasmania where I’ve eased my work load, upped my fine art a little, and squished [...]
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 thought it might be a little more realistic to post 'status' reports as I battle on with PN. Most often I try to be positive and hopeful but the reality is PN is nothing but hardship, sacrifice and loads of pain. Instead of bombard my website with these status reports I chose to write these on my Facebook page. It also makes it easier for me to provide support in the form of 'live' communication. I can keep posts short and they can be posted from the phone more regularly. The website tends to have 'major' status updates, I felt I needed to comment about the day-to-day struggles.
When I hear 'festive cheer' I can't help but rhyme it with 'Festive fear', are you terrified at this time of year? Festivities call us to get out of the safe daily zone, step into marathon entertaining, baking, wrapping, socialising, a time to move away from our therapists and their treatments (Lord knows they need a break!) and jump! It's impossible not to wonder, how will this end for my pelvis?
...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 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.