I just wanted to add a quick note here today, one that I feel we all deserve to hear more often. At my last check my doctor and I discussed the fact that I dropped my Fenytanol patch use by 25 mg. He noted that while it took me three months to completely wean myself from its usage by adding in more pills, oxycodone, that I had done a great job. He then discussed dropping down another 25 mg. I told him that while I was definitely interested in doing that I wasn’t interested in doing it until after the winter due to the increased pain that winter brings.
He pushed the idea a couple of times but ultimately left it up to me without being upset. As we continued to discuss my experience of the withdrawals, I brought up my continuing search for new tools to use for my chronic pain as lowering my medication increased my pain. I was rather afraid during this visit that he would be upset with me for Continuing to need more pills or not immediately lowering my patch. As it turns out it was a very different experience and I had no reason to be afraid. As I got up to leave he stopped for a moment in the hallway and smilingly told me that he wanted to congratulate me on how vigilant I was in finding and using other tools to deal with my chronic pain. He talked for a moment about how so many patients don’t do this and he wished that they would.
As chronic pain sufferers we rarely get that kind of validation from our doctors, but we need it. Of course this means we also need to be actually finding and using our tools. Each one of our tools in our tool bags will look different from someone else’s but each tool has it’s purpose. It may be that one of our tools or many of our tools only work sometimes but we need to have them in there for that time. I know as well as all the rest of you do, that it’s exhausting just to be in pain and the idea of both finding and using those tools can feel like a useless drain of our already limited energy, yet it’s so very important to keep at it. Once we have our tools we can use them to suffer less. Once we understand our pain we can avoid the need to suffer without understanding why. This creates power over our pain, instead of it having complete rule over our body and mind.
We have to fight for ourselves. We are our own advocates, no one else knows how we feel and what we need but ourselves. Not our family and certainly not our doctors, that’s been proven time and time again to me. I continue to struggle eith adding new tools every week. But it’s a struggle that I try to embrace. My doctors words to me should be words to us all, words of comfort and wisdom.
As the rainy season storms in keep working at it, don’t give up, you’ll find what you need. I hope all of you stay warm and have positive experiences this winter.
Lucinda Tart, ILS, Chronic Pain Peer Consultant