I'm so sorry to hear you have this painful and unpredictable disease. Before I get into the details of your situation, I want you to know that we have a topic in this discussion specifically devoted to pain
. We have a pretty rich and informative discussion going on there, so I would encourage you to visit that topic and keep posting there.
I trust you are getting good medical care and you have explored would ever pharmaceutical options are available to you, so let's talk about your mind on pain. When you say trying to "anticipate the event", that can mean several things. When my pain felt out of control, sometimes I was vigilant waiting for the next episode. And that made it worse because I was always tense and the pain just made it worse and vice versa.
In an ideal world you would be open to whatever comes next whether it feels good or feels bad. You would be aware of what's happening at the moment and fully aware of the truth that you have no idea what's happening in the next moment. At the same time you would trust that whatever comes in the next moment wouldn't last. And if you did that your name would no longer be William – you would be "the Buddha-the enlightened one."!
Okay so that's not gonna happen, but let's take a look at that before we just get a chuckle and return to being mere humans.
You said that sometimes things like deep breathing and distractive thoughts can reduce the shock of pain. That is critical learning for both you and your brain. Practicing that brings you a step closer to the Buddha. When you focus on your breathing, you are making your brain attend to other things that you are experiencing.
When you experience pain, all of the attention you have goes to where the pain is and what it means. Then the mind takes over and we all tend to catastrophize. But the truth is that when you are experiencing pain, you are also experiencing many other things-like breathing, like the temperature in the room, like the ambient sounds in the room, like the person you may be with or what your eyes maybe looking at. While you are experiencing pain all of your senses are experiencing other things.
These are not exercises in distraction, these are exercises in being aware of everything that is happening to you.
And what you've described is just right. It doesn't change the pain and might not change the severity, but it does change your relationship to the pain-it no longer has to be in the driver seat of your life.
There are many good websites that teach these breathing exercises in a pretty disciplined way, and the research shows that most any form of meditation has a great track record with pain.
I wish you the best William and look forward to seeing you in our other "discussion"