I was sure. So positively sure.
I was miles better, my life was saved, I was no longer existing, I was living again.
I was sure that I was the best I could possibly be and that I’d received the best possible treatment for my type of pelvic pain.
But now, after a very successful sacral stim trial (of which I’m best writing more about later), I am left to wonder why I made up my mind and what it was that convinced me I was ‘doing great’ and reached the ‘best treatment‘.
I wasn’t, I hadn’t.
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!)?
In the world of chronic pain, you hear this all the time; the longer the pain tune plays, the better your brain becomes at playing it. Was I influenced?
It’s difficult enough being a patient and navigating the pain treatment path but I would consider myself pretty ‘active’ and ‘aware’. Even still, I came so close to missing something monumental (assuming the permanent sacral stim is as successful).
How many more patients are tolerating pain levels they shouldn’t be? How many could be living a much better quality of life? How do patients reach professionals and professionals reach patients? How does a GP know there’s more out there, that there’s better treatment?
How can I not ponder the above thoughts after finding most of my own pain professionals, myself. And my current team, I really did meet by chance. Vicpain were not referred by another professional but rather a personal friend.
So then, that makes me wonder how many professionals are followers and how many are leaders? It’s the same in any industry, isn’t it?
As creative director of ooi, my personal work ethic was to put aside my personal design preferences when tackling a brief, shedding all influences and stepping into my client’s shoes. This was my way of assuring I was producing the best possible solution.
The other life committment I made was to keep learning. I was a professional and I was expected to know how to work with my client and achieve (if not exceed) their expectations. It was a customised approach, not one focused on my company’s portfolio.
I recognise this formula in my current pain team. I see it, I hear it, I feel it. I feel now, with previous treatments, that perhaps all options weren’t considered. In my creative world, this would be a designer who offers a fashionable finish leaving the client with a concept lacking in substance and longevity.
As ever-present factors in any assessment, I must grant hindsight, the speed of research, time and place some acknowledgment. But, what I truly believe I’m experiencing is the difference between caring and treating and what divides people into leaders and followers.
From my perspective (and Theo’s), the result of my latest trial treatment amounts to hours more work, better quality of sleep, hours of adventure, hours of creativity, hours of thinking ability, thousands more footsteps.
It’s the difference between grams and kilograms, reading and not reading, flat shoes or heels. It amounts to more function, a squillion more smiles, tastier food, happier times, oh I could go on… so on… I won’t, because it’s sad.
When a chronic pain patient misses out on successful treatment, they’re actually paying for it with their quality of life.