Every once in awhile, the Universe sends me a day that is filled with happiness, for no good reason, really. I treasure these days. I love that there is no reason for a great day...it just is.
On Friday, it was easy for me to forget that there are good days like today. On that day, my body was wracked with agonizing pain; my brain felt as if it were enclosed in a deep, dark and ugly Cloud. On that day, if a reason came up to be happy, I would immediately have found the negative side of it.
On that day, I cried. I rarely cry, unless the ending of a book or movie has me in thrall. On that day, I shook my fist at the Heavens, at the Powers-That-Be. I was enveloped with anger towards Whoever decided that I was to live the rest of my life like this. What lesson must I learn from it, I yelled...I am not stupid or dull...wouldn't you have thought by now I would have got it?
There was no answer. I felt as if I had been forgotten, as if I was of no consequence. I felt alone, without the strong faith which has sustained me so well throughout this damned disease. Which is strange, because I surely was shouting and yelling at Someone...
Barometric pressure, when it changes drastically, has a huge bearing on the really bad pain. And on Friday, the weather patterns changed hourly, cold, sunny and windy one minute, cold, windy and snowing the next. My body reflected each change. There was no getting accustomed to the changes...they were like Lightning. My little weather station, which tells me what the barometric pressure is, went up and down like a yo-yo.
On Friday, even though there was a little voice in the back of my mind telling me the excruciating way my body was reacting would change again, I thought this would be forever. I could not wrap my mind around any positive thought.
I wrote, that day. The words I wrote will never see the light of day...they will be stored with the rest of the long essays I write when I am really, really, really in pain. It is difficult to read them...especially when I feel relatively good...I shy away from them then. I prefer to forget the really horrible times, when my mind is dark and I am writhing in shooting pain and throbbing cramps.
On Friday, I tried to laugh. Laughing is good for me, strong, belly-laughing makes pain lessen. I watched the comedy network...even it, even people who can make me laugh without hardly trying...could not rouse a single giggle out of me.
I'd understood the trip to the Island would precipitate an attack. It would be unusual not to have one. I accept that, I am prepared for it. The trip is always worth it; I would not take a minute back.
But the punishment on Friday was over the top. Not one drug I have in my arsenal worked. Not one. I may as well have been taking candy. That might have worked better, actually.
I have a doctor's appointment next week. He will hear, he will watch me cry, he will tell me it is alright to cry, that I have reason to do so. He will change medications once more. He will offer, again, to place a standing order at the hospital for injections, stronger drugs to keep the pain at bay. He will send me for tests yet again, and he will offer to send me to another specialist.
And today, I am of the mind that perhaps someone, somewhere will know how to treat this unbelievably traumatic torturous disease. There must be someone...
Surely, through the ages, someone must have discovered a way to live with mind-bending chronic pain. Without mind-bending drugs...
I could not think in this hopeful way on Friday. On Friday, even heat would not work...what felt like an almost boiling water bath I prepared actually made it worse. My body, even as red as a cooked Lobster, still insisted on twisting and turning with pain.
A realization...an epiphany, if you will, popped up. During hospice training, as I tried to hide the fact that I was feeling pain, someone asked me why I would. Why would I hide it, why was I ashamed of it?
I've been thinking about that question a lot. Why am I so intent on appearing normal, whatever that may be, when to whomever looks at me...it is so apparent that I am not? It takes a lot of effort and energy to appear pain-free.
I caught a glimpse of myself in a mirror in a store the other day. Who was that woman whose face was screwed up, whose mouth was turned down, whose back was bent? That was me. In a moment when I was intent on something other than pain...that was me.
I'll have to accept there will be times when my mask recedes. I am accustomed to placing myself in other's positions when I am stumped on something like this. Would I want to speak with a lady who looks embittered, as I do, when I fight the pain? The answer is...probably not.
But there are days, like today, when my mouth is turned up, more often than not. My back doesn't seem as bent and all those wrinkles matter not. And it brings to mind the idea I might take a look at how I see others.
And I might garner my resources, as they say, and take a look at why I might feel shame at feeling chronic pain.
Today, all that is in the past. I am happy right now, just because. Pain is around, but muted and manageable. There are knife-like stabs here and there; it makes me happy I am so accustomed to them. It's an odd thing,perhaps, but for me, it's huge...
Just as huge as having a great day!