Wednesday, August 13, 2008
Chronic pain, whining and all
I'm not much up to writing, but I feel something akin to an obligation to write. In my last post, I wrote something to the effect of "try to stay out of the hospital if you can", but this morning, that's where I was.
I dreamt last night, all night it seemed, of pain (though, thankfully, I do not now remember these dreams). I awoke in agony. Every joint on the right side of my body was screaming in pain. Another day, more pain. It was too much. I started to cry. I couldn't think straight. Could anyone? I always wonder about this. Like a kid who thinks they may be sick and has to fight with a parent over going to school, I have arguments with myself about just how bad I feel. Is it really this bad? This may sound absurd on the face of it, since I just stated "I was in agony", but when one has had chronic pain and psychiatric problems for a lifetime, it can get pretty tricky.
If I were just anyone, so to speak, there'd be no inner arguments (nor would there be arguments with others). It would be plainly obvious that something was terribly wrong. But this is not the case for anyone who has chronic pain. I know this, both from reading, and from knowing others who have similar situations. Other people stop believing anything is really wrong, and so do I. Yet, when the pain gets so bad that the tears begin to flow, or one imagines banging one's head against the floor to distract oneself from the amorphous, always changing nature of chronic pain, well. . .all the deep breathing and positive thoughts in the world are not going to help. Another day is ruined. It's another day where all there is to do is just try to manage, to cope, or to try to get some restorative sleep.
But, no, it isn't even this simple. Part of me says it can't be that bad and that if I just get out of bed I'll feel better. Another part of me says I can't take one more minute of it. Another part of me is terrified, thinking that, finally, this time, they will find something fatal. Then yet another part of me kicks in, reminding myself how irrational this is. And this sets off a dialogue about whether any of it is indeed real. I try to get out of bed and the minute I start to move my muscles, the pain is worse. Of course it's real. Then, I fear that they will, once again, find out that they've found nothing, and wish for something worse, just so they can finally fix something tangible. And this sick wish fulfills another need, the one for others to understand that indeed I am physically sick and not just crazy. But, the whole thing which I'm describing, which I'm trying to describe accurately, is crazy making. How could it not be?
This is fibromyalgia. It's horrible. What makes it horrible is not just the unpredictable nature of its episodes and its intensity but the fact that there isn't a blood test, an x-ray, an MRI, or anything that conclusively says that it is what it is (whatever it is). Even it's name is amorphous. It only means pain of soft tissue. "Just" pain.
I try to find other diagnoses. I've had so many odd things go wrong that I feel I must find a "real" answer, since no doctor has done so. I've had optic nerve hemorrhages and iritis in one eye and this is associated with lupus and psoriatic arthritis. I was once diagnosed with lupus (which does have an associated blood test) but I didn't have the one hallmark symptom of lupus and so they hedged about it. Then my blood tests became normal, so that was nixed. It was just as well, I suppose, for I wouldn't have wanted to live life on prednisone.
I have early onset osteoarthritis, but just about everyone gets osteoarthritis at some point, so why whine? Oh, I really do want to whine. I don't want to whine just for me but for all of us who suffer from chronic pain. I spent my childhood and teenage years hearing about the boy who cried wolf, but there always was a wolf.
I spent an entire school year complaining that my feet hurt while I endured that stupid story. It's a small thing (as in "I didn't have cancer"), but my feet were so flat that the bones in my toes and heels were wearing away. I just found out I have bone spurs, which is the result of injury to my feet. I am sure it is from then. The only reason my parents finally took me to the doctor, as far as I could tell, was so I would finally shut up. Then they bitched about the price of the metal plates I had to wear in my shoes.
As I mentioned in another post, I went to an eye institute to fix my lazy eye, which didn't bother me, but bothered my mother, because she had to look at it. Because of the training, I had a constant case of eyestrain and headache, but at least I didn't "look funny". My eye never did become normal, and I wound up with double vision. Thanks alot.
Oh, this is a bitchy post, isn't it? I am venting. Yes, I am venting all over the place. I want to vent, for me. And for everyone else, too, like I said. For all people who've been brainwashed into thinking that they are creating their own pain, or exaggerating or should be used to being ignored by others, for, after all, it's such a pain in the ass for other people to deal with someone else's pain.
People like us watch any movie or TV show and if there's someone hurting, we see pictures of hands held, faces touched with loving hands, flowers on the bedstand and chairs with loved ones at the bedside. But if one doesn't have cancer or a huge cast on a broken bone, the stuff of caring just doesn't happen. Oh sure, people do care and it's important to understand the ways in which they show it, but these little indicators, the ones that seem so universal and common, they have long been forgotten. And being upset about it isn't healthy, nor does it help. It just sucks.
No, this isn't good writing. I'm just throwing up all over the proverbial page.
It's damned hard. Pain management? It works. Meditation helps. Yoga helps. But what happens when one can't do one or the other for some reason? You get worse. And then there's the need for painkillers, which can become a problem. I hadn't taken any since early Spring, but this morning I might have killed for some. With that thought, comes the other bit of neuroticism (and genuine fear) that it's just my mind, playing some sort of trick on me in order to get drugs. There's no real pain crisis; it's just drug addiction.
At the hospital, they give me some morphine and I realize just how much I needed it. I felt no rush of pleasure at all. I hardly felt it, but I did feel some of the pain leave me after a bit of time went by. I was not enjoying myself. I hesitated when the doctor wanted to give me a prescription. I have had problems with painkillers. I do not want those problems ever again. But I need a decent night's sleep. I want some relief. The amount of work that's required to stay calm in the face of unrelenting pain is a lot. I needed something outside of myself to take over, just for today.
Is this all bull? My society tells me it is in various ways. The drug companies are just trying to create legal drug addicts. I'm experiencing pain as a trick my drug addict's brain is playing on me in order to seek out drugs. I'm a hypochrondriac. And I'm sure there's more.
Okay. That's enough.
I wrote this the day before yesterday. As I was finishing it, I became so tired that I fell asleep on the sofa. When I woke up, I read it over and thought "Too much whining. Don't post it." But I didn't delete it, and now, I've decided that it's okay, whining and all. The truth is, I could have whined a great deal more. The repurcussions of having a few days of such unrelenting pain, of again not showing up for things one wants to go to, or missing small deadlines, seemed far greater than should have been. That was more evidence of how others lose patience with those who have chronic problems. Again, I think others start to see people "like me" as malingerers or lazy or even dishonest, as though I'm just making stuff up 'cause I don't want to do something, especially when the exact opposite is true.
I'd like to write more about the above, for I think it's a serious problem with most people who have chronic pain, illness and psychiatric problems. But not tonight. I'm too tired.
Image note: From a 2005 Time magazine article about pain.