It sounds so .. silly ... stupid, find a thesaurus for those words and keep going for me, but how do you describe what is the worst pain you will ever face in your life time - to someone who will (you hope, pray whatever other spiritual practice you have) never experience it.
Well my standby is "It's like someone is taking a chainsaw to your face, whilst jacking in the national power grid to your teeth." I usually get a look of that is hyperbole or some other less decorous remark, but really that is what a "crisis" feels like. My not so bad version - i.e. the pain was mitigated by my tegretol, is that it feels like Mike Tyson is punching me, whilst I have an electrical storm zapping me. And for after the event - 10 rounds with Tyson, and I lost badly.
I try to joke about it, I mean I could be all boo hoo about it. I think we all have a right to it too. (And if that is YOUR approach and it works for you, then who am I to say you are wrong?) But to me it seems like a collosal waste of time. It hurts - you can get angry about that. Heck I am! but is it going to get me ANYWHERE. Nope, didn't think so. Anger just seems to feed on itself, and then where do you find yourself, stuck in reverse when you want to go forward!
So where have I come to? The ability to surrender to others when I need help, to know I can't do this alone. To connect and talk it out with someone is to heal - to me. To let go of the fight against the pain in the moment has, it seems helped me to be able to focus on when the pain won't be there or not at such a high level. And when I am having a good day, I am learning to embrace it more. To that much I now seem to have a motto - something to live my life by. Love harder, give more.
I have to say though - feel free to dislike me on this one. This insidious disorder of ours has proven to be something of a blessing in disguise. It has taught me what has real merit and value, it has made me think on what has meaning to me, what matters the most, and what makes me the happiest. And you know what? One of the things that matters the most to me is helping others. End of. I don't care the problem, where you have been, what your politics are, what other illnesses you have. You are here on this pale blue dot (Quoting Carl Sagan here) and therefore if you want help, I am your girl. Because by being ALIVE - you have merit, value and meaning. You are what matters most and helping you (even if it is just an ear to lend) is what will make me happiest.