Chronic Pain: A Self-Help Guide

I Want to Die. The original title of this book was “Dead Life: Life Dead” but some of my friends said it sounded too gloomy. And well, I didn’t really want to die but at times I really did want to die. I just couldn’t go on living that way. Rather, I didn’t and don’t want to live with this pain. When you have severe, chronic pain it is like being dead. Well, no, really, sometimes I really want to die to escape the pain and the loss of quality of life that results from it. It’s like living in a cesspool of human waste similar to the “Slum Dog Millionaire.” This all sounds confusing and reflects the confused state of mind that comes with chronic, severe pain. F*** it. How did I get here? Who’d have thought that my life would end up like this? F*** this shit. Dear reader, I apologize for my vulgarity here and in other parts of this book. I don’t generally curse but sometimes that is the only way to express the feelings I have, to break through the polite circle of courteous behavior. Severe pain doesn’t give a f*** about politeness. Intense continuous pain, tears, and rages. Rage at the pain, the “system” that supposedly treats it, and how the pain goes on and on, and never stops. When my patients read it, they say, “Yeah. Doc. You really know what it’s like. The cursing has to stay in the book cause that’s what makes it real. It makes me feel like I can talk to you. You get it. Leave the curse words in; they make the book seem more real.” So why should you buy and read this book? Because it’s about learning how to cope with the pain. This self-help book is for people who suffer unbearable, severe, screaming bad pain and those who live with, love, and support them. In spite of the pain they continue to live, as much as they can, sometimes a breath at a time, looking at the sky, seeing the clouds, feeling the cool breeze and the warm sun, and gradually build a new life out of the catastrophe of their pain, even though the pain never goes away. Chronic pain happens—it is real—you have to deal with it. You have no choice. Suffering is, however, to some degree, optional. It is very difficult if not impossible to get across to someone who doesn’t have or who hasn’t had severe, chronic pain, how totally, totally devastating, debilitating, debasing, and humiliating it is. It is like being dead but alive or alive but dead in all the things you used to be able to do; simple things like bending down to tie a shoe, or opening a door, or even getting out of bed. It takes me an hour or two to get up and going. First I wake up, and then I think about moving my body and getting my legs off the bed, and then sitting for a few minutes to get the energy to actually stand up. Then there is the slow walk to the bathroom; then brushing my teeth and squatting down so that I don’t lean over the sink—as that simple act of bending over will cause me more pain. I’ve read other books on chronic pain, supposedly written by persons with chronic pain, but their description of their pain doesn’t come close to coming through in their written words. They either haven’t really had severe, chronic pain, or they are missing the point by trying to make it an academic review of research. By sharing my story I hope to let you know that you aren’t alone and that there are some things you can do to decrease the suffering. There is water in the desert; you just have to find out how to get it. My story of my own pain and suffering also lets you know that I have been there, am there, which I hope will make my suggestions of self-help more meaningful to you. Chapter 2: Stages of Pain I’ve come to think of pain as having stages, much like those of grief. First comes denial, then anger, bartering, depression, and finally acceptance. However, these don’t occur in a linear fashion one after the other or in a straight line. They occur in a mixed-up order and the stages aren’t static; that is, one doesn’t finish with one stage and never go back to it. You might be in all five stages at once and/or you might go from one to the other and back in one day or one hour. It’s like being a boxer in a ring full of dozens of other fighters all punching you repeatedly and it seems that there is no way out. To me, grief for a lost loved one is easier to cope with as it—the death—is over, and time does lessen the pain for most people. Chronic physical–emotional pain is never over; it goes on and on, hour after hour, day after day, week after week, month after month, like the fires of hell never go out. You get the picture. I use the hyphenated word physical–emotional pain, as all chronic physical pain has at least some, and usually a lot, of emotional trauma. Of course the reverse can also be true—that emotional hurt can cause physical pain. However, that doesn’t make the pain any less real: more on this later in the section on “Types of Pain.” Denial It isn’t that you deny having pain, but you/I deny that it is not going away and has become chronic. This is much more insidious than that, however. It’s the denial of the reality that you can’t do even the simple things you used to be able to do, like unloading the dishwasher, bending down to pick up a dropped paper, playing on the floor with a child, or any of the things that you could do prior to having the pain: the creeping loss of independence. “This isn’t happening to me. I’m stronger than this.” Having to depend on others for simple things like driving to appointments and not being able to go to evening events without someone to drive you because you’re on so much medication you can’t drive. All of this pain and medications erodes your very soul like a trickle of water that eventually erodes the earth and causes deep furrows and even deeper gullies of despair. This stage is very vicious as it causes a self-destructive circle of trying to do things you deny that you can’t do, then doing them and suffering the consequent aggravated, severe pain. I kept asking myself, “What did I do to make my pain worse? I didn’t do anything.” But I had done something. One time I had simply kayaked out to my son’s sailboat and stood and sat and watched him work on his boat. Kayaking is just like paddling a small canoe. I can kayak because I have good lumbar support and am not in pain as long as I don’t stay in the same position too long. I can do lots of things like walking and riding my stationary bike without any pain: more on this later. What I can’t do is stand still for more than a few minutes, or sit in one position too long, or lie on my back for too long. I just watched my son work and swayed with the boat’s movements. But that evening my pain was much worse. The kayak paddling time to the boat was only 10 minutes. Surely I could do that? Before my chronic pain I had been riding a stationary bike almost daily for 60 to 90 minutes. Since my injury I have continued to ride but not as much. But standing and sitting in the swaying boat did cause my back to hurt the next day. No more kayaking, at least for a while. Or maybe it wasn’t the kayaking. Balancing myself with the gentle rocking of the boat puts lots of minor repetitive stress on the back. The pain is like small threads of a fine garment that are pulled out one at a time, almost unnoticed until the bare pain is exposed. Another time I had to get a new refrigerator. I unloaded the old one and after the new one was delivered I loaded it with the stuff from the old one. A very simple task, nothing over 3 lbs. or so, and not very much of that, but again I was in severe pain afterwards. It was like Sisyphus pushing the dung ball up the hill only to have it roll back down and he’d have to start over again, on and on.