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!)?
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).
Here are some of the important messages that we hope you have taken on board: Your brain can be a powerful tool to help you manage your pain experience. Like all of our life experiences, that of being in pain can be changed. You are not to blame for your persistent pain. You can experience pain without evidence of tissue damage and not experience pain when tissue damage has occurred. Drugs (or needles) alone are not the answer. The “third space” engagement gives you the best possible opportunity to better manage your pain. Consider embracing the whope model of care. Could this be your slogan? Know pain, know thyself!
It’s my PN anniversary, eight years (if I don’t subtract the 4.5 years it took me to find out it was in fact PN)! Obviously time brings on reflection which in turn [...]
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 [...]
The following story was published in support of the current National campaign: Nerve Pain is Different. Please help us raise awareness for those with debilitating invisible pain. If you think you have [...]
APS: How important are support groups for both you and your close family/community? Soula: I can’t say I feel there is much support for my husband and family/community. It’s difficult with invisible pain, it’s a similar scenario with depression, we still don’t get it. Society seems to have been given an immense right to provide their opinion (e.g. with social media platforms) and this has opened up some kind of authority to encourage opinions and much judgment. Not many tread carefully or really think from someone else’s perspective. Although we have more information accessible to us, we seem to be learning less.
It took nearly five years of chasing answers, of tests and interventions, frustration, grief, and constant, unbearable pain to reach a diagnosis. The fall caused nerve damage in the pelvic area, very real but invisible on MRIs, examinations, X-rays and CT scans. “It is still a primitive time in pain. Being told for four and a half years ‘this is chronic pain ... go home and live with it, there’s nothing that can be done’ is brutal not to mention primitive.”
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.
Collage has been a little more therapeutic for me than my usual art forms. I think it must have been finding a technique that I could manage and one that didn't add to the fatigue and pain. Cutting small pieces of paper and glueing, drawing, attaching was just so light and easy. The painting of small pieces of paper and the careful ripping and tearing was like rocking. So gentle, so calming and at the same time feeling like I was handling my pain, expressing it and getting it out of my body and onto the art piece.
