About 4 or 5 years ago, I had a real epiphany on this topic. It was one of those ah-ha moments that really stuck with me. It occurred to me that "pain management" didn't mean that the doctor was going to get me to "pain free." I realized I was never going to achieve "pain free," what I was striving for was a level of pain that I could live with.
That was huge for me. I kept saying "but I still hurt," and my doctor would say "of course you hurt, you have RSD." He would send me to physical therapists and psychotherapists which I didn't understand. I thought, I'm not crazy, I hurt. Then I would assume that he was sending me to a psychologist because he didn't believe me about my pain. And I see a lot of people on these groups making the same leap. "My doctor wants me to see a psychologist. He obviously thinks my pain is all in my head." NO! He is sending you to a psychologist because he knows that you have an IMMENSE job in front of you: learning to live with pain. My doctor understood that he couldn't fix my pain; I was the one choosing not to understand that. I would say, "I don't need a psychologist, I need more pain relief!" What he was telling me, in so many words, was "I have nothing else for you, you need to find a way to cope with what you now have." That's difficult to accept, so I didn't; I continued to misunderstand and say "but I still hurt!"
It is something that nobody wants to accept. Nobody wants to hear their doctor say, "You have a disease that I can't cure, and I can't relieve the pain." I sure didn't want to accept that. I kept saying "but you don't understand." What he was trying to say is "no, you don't understand." Now I understand. Pain management means finding ways to cope with a life full of pain. Meditation, psychotherapy, yoga, whatever it takes to help stay on top of the pain.
I suppose that's what I am trying to do with this blog: give people tools (hobbies, pets, friends, etc.) to cope with the pain that is now their constant companion. In many cases, your doctor doesn't have the magic pill that you so desperately want. That is a devastating thing to take in, so many of us choose not to hear it at all. But we have to understand it to start moving forward. You can spend your whole life in bed, moving as little as possible to try to minimize your pain (and probably still hurt anyway), or you can understand the goal of pain management which is to find a way to live with pain. To accept that you will hurt, and carve out a life for yourself anyway. It's not easy, but it's much more worthwhile.
Love this post, great topic.
ReplyDeleteYears ago, I was watching a biography on a famous actor and they showed a clip of him being interviewed by Art Linklater on "This Is Your Life" - said actor was a recovering alcoholic, and he mentioned one of the first things he had to learn was there would never be a time when it was okay for him to have a drink, that for the rest of his life he'd be a recovering alcoholic. THAT was the biggest shock to most people heading into rehab: they thought by getting their problem under control, they could then drink responsibly - they had no idea getting their problem under control meant never drinking again. THAT was the first hurdle: realizing a life-long condition means it's a condition you have the rest of your life.
You are soooooooo awesome. Great post.
My mother's chronic pain was due to a degenerative spinal condition. One of her coping techniques was self-hypnosis. She became very good at it, until she had an "out-of-body" experience. It frightened her so badly that she quit using hypnosis. It was a shame as it was one of the most effective things she ever did for those "more pain than she could stand" days. Linda
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