I've increased some of my medications in an effort to stop the spasms. These demonic twitches have been starting up three times a day, lasting anywhere from just thirty minutes to an interminable three hours. Their three instances vary, but the last few days have seen a pretty early first onset, around 11 am, with the second visit in the late afternoon, and the unforgiving third beginning almost promptly at 8:30 pm. What has prompted me to resort to grabbing more pills, though, instead of white-knuckling my way through, are the changes in frequency and in the sly adjustments my enemy has made in how it conducts its wily, ugly, piece-of-crap self.
I'd never given much thought to how much time was elapsing between spasms, but when my screams seemed to be piling up, one shriek right on top of the echo of the last yell? I decided to be oh-so-crafty, too, and count off the intervals. My first attempt at counting, I made sure to follow the tenets of "one one-thousand, two one-thousand," calm, steady, and every time, I got to "eighteen one-thousand" before I had to scream. Even when I felt stubborn and resolved not to make a sound when I hit "eighteen one-thousand," I had no ability -- none -- to stop that disturbing vocalization. The second go-round with counting off the time? I couldn't even maintain the pattern, that comforting rhythm, because the short-circuiting area of my brain decided on irregular firing, on pulses of 18, then twenty-two, then 12. My point? That is a very short amount of time between onslaughts; There is no time for recovery. This is new.
This is horrible. I understand the meaning now of "I wouldn't wish it on my worst enemy." Okay, well, that is something of a sad confession. Until this, until now, I had little problem wishing stuff upon my enemies, and I admit it.
A doctor told me recently that he would kill himself if he had CRPS. I assume he meant CRPS as I have it -- bad and unbeatable. What else could I assume, since I was the only "CRPS referent" in the vicinity of the conversation, a conversation being held aloft by just three human tongues? What is sad is not his comment (it's more in the category of neutral, a rhetorical ecru) but my complete lack of shock, the absence of any surprise. "What? My God! Why ever would you say such a thing?" has faded away and left me with "What? What? Oh, that?"
I can't kill myself right now because Fred would be lost, financially. I promised, at some point, to take care of him -- and what I cannot explain here, though I assure you it is true, is how Fred has given up more than you can imagine, and that he did it for me, and that I owe him, as is said, big time. He has not been able to travel certain paths, plan for life as he would have.
I have to keep my promises.
Yeah, so. I don't know how I got to talking about *that*. Good grief.
The other change in the current Shift Toward Intolerable? The center for these bits of seizure has shifted so that I would swear (and bet all of Fred's inheritance, no matter the odds) my hips were grinding themselves to bony bits. Actually, I have a prosthesis for a right hip, and the left hip is pinned. The right one is okay, most of the time. I can tell there is activity on the right by the degree of generalized soreness. It's my best major joint, that right hip! Yay, right hip!
But the left hip, despite still having its original parts, is the Devil's Spawn.
Oh, I give up. There's no explaining it, and why should there be?
The amount of Baclofen required to just get through the day is not enough to stop the pain. Somehow, my mind is supposed to keep that knowledge front and center, available to reason. As in: Don't take more just because the pain continues, the screaming continues, the smashing and grinding continue. It won't help and it could kill. It's the same with the other meds -- with any medication, any drug. It's imperative that I remember that in the middle of all the awfulness.
I think, every day, several times every day, how understandable it would be were I to forget.
On the way to the orthopedic surgeon's office on Thursday, I had just escaped the first of the three spasm periods for the day and hadn't had an opportunity to really process the night -- I woke myself with my own screams. He was driving. I was riding. I thought we were okay. I began telling him about the night, about the pain. He stopped me, said I overwhelm him.
All I could do then was cry.
Because -- of course, I overwhelm him. Who would not be overwhelmed? Who would not feel trapped? Who would not be sick of pain, talk of pain, the sound of pain, its look?
But what makes me angry, besides being told, basically, to shut up, is that he thinks he knows what I am dealing with -- and he does not. He thinks that if I feel it, I blurt it out -- I blurt it out all over him, and rush to do so -- and feel better afterward. As if it were a beneficial purge. Except that I don't. I don't tell him most things, and I surely don't share with him most pains.
And it has been many years since I have felt better for having shared with him.
He is controlling me, in many ways, and I resent each of them. I resent him.
He passes himself off as a "caretaker."
He does not. He does not take care. I tell you -- he could not discern another person's needs if you paid him to -- and, ha! I do! And he doesn't. And I don't deserve this. I have to keep living because of him and his inability to care for himself, never mind anyone else.
All of this is true, but all of this is nothing but me, unabashed, unfiltered ego, the moi at the center of the universe -- it lacks the grace of the angels, it lacks the child that shines from Fred, it doesn't pray for what the congregants are pleading.
It just freaking overwhelms.
I'm going to be twitching for a while yet tonight, and then later again. I need to wash and change my clothes, do the dishes, write my mother a letter, my brother Grader Boob an email. Wave at the moon that is the same moon shining over the Grand Canyon, and over my brilliant brother Tumbleweed (and friends). We got a postcard from him today. I swear, the boy is having a good time!
I wish I could be among those pilgrims.
Fred is asleep right now, curled up on the sofa. He looked cold so I covered him with a blanket.
We need things just that elemental.
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