I stopped the Fentanyl (a strong painkiller) this week and spent a sleepless night in withdrawal, wired, nauseous, hurting, shaking, shivering, and unable to lie still or get comfortable in any position, even with a sleeping pill. The next night was a little better, and on the third night, I took both a Neurontin (a non-narcotic pill for nerve pain) and an Ambien, but even that didn’t enable me to stay asleep, so at 3:00 a.m., I got up and asked the Internet, “Why should I continue to live?” The answer was basically because of Peggy. I’ve talked to her about feeling that, in order to keep going, I must find some reason for optimism. I know that three months isn’t enough time to justify such hopelessness, yet no one who hasn’t lived day-in and day-out with severe pain has any right to judge me because only they can understand what it means to live with minutes that drag like hours, and hours that drag like days, day after day after day until all one can do is to cry. It’s also true that when one lies away for most of the night, desperately tired, but in too much pain to sleep, one’s thoughts go into the pit, and my own pit contains statements like, “There being no god, life is pointless at best, and as for my own life, it will only go downhill from here until such time as I kill myself, or worse yet, Peggy dies,” and, “The people who are supposed to be my friends never call or come to see me, and this means that I’m all alone except for Peggy and my blog buddies,” and, “It might take her awhile to realize it, but Peggy would be better off if I were dead because I have nothing left to give, and everything I try to do to help myself only throws good money after bad.”
Today—four days after stopping the Fentanyl, I realized that I simply had to take something, so I took a fair-sized dose of oxycodone (the ingredient in Percocet), and since I hadn’t had any for awhile, it took the edge off. I’m still resolved to stay away from the Fentanyl if at all possible if only so I won’t have to face going through withdrawal again.
As most of you know, I’ve lived with pain for years, but this is far worse, not in intensity, but because it never stops. In order to understand my discouragement, it’s crucial for you to know that, instead of getting better with time, the pain is getting ever more severe, and I keep telling myself that It’s not supposed to be this way! My shoulders have been a major problem for nearly a decade, but the pain is nearly always worse at night and can be eased by taking a moderate dose of pills and sleeping in a recliner with ice packs on both shoulders and a heating pad on my chest. Nothing but a high dose of Fentanyl touches this pain much, but a life on drugs is a life spent treating the symptom rather than the problem, yet what choice do I have? I can at least be glad that I have access to good drugs, but they’re scary because the dose that I need to ease the pain is such a high dose that I live with the fear that I might either accidentally overdose or that my liver and kidneys won’t be able to sustain the amount of drugs I take, and then what?
I’m also taking Fosamax (a bone thickener) for a month; I start physical therapy on Monday (I’ve waited nearly a month to get in); doing physical therapy exercises that I got off the Internet; and I see a new neurosurgeon the week after next (I fired the old one). I also get a BIPAP on Monday. I have severe sleep apnea, so I’ve slept with a CPAP for years during which the apnea has gotten worse and worse. Now it has suddenly gone off the chart, so much so that the new $3,000 CPAP that I got in December can’t control it. This means that I’m exhausted all day because of the pain keeping me awake and then the sleep apnea interrupting what little sleep I do get (a major reason I stopped the Fentanyl is that pain killers—and any other drugs that relax you or make you drowsy—worsen sleep apnea). I also started going to a massage therapist today, and while I don’t know how much she can help, I’m well aware of how little doctors have done (it’s either drugs or surgery with them), so it seems worth a try even if insurance won’t cover it. She talked to me about my posture (which I already try mightily to control), suggested that I ice my back frequently, use a foam roller for back stretches, do an exercise that she showed me, and have Peggy massage me both with ice and with a car-wax buffer (being massaged with a buffer actually sounds damn good, although it weirded Peggy out when I told her). That massage hurt like hell, but Sylvia comes highly recommended, and I told her to do whatever she thought would help.
I went back to pruning the apple tree today (it being the tree I was pruning when I broke my back). I can’t say that it wasn’t scary going back up a ladder, plus I did it while Peggy was at work, which meant that if I fell again, I would be alone again. Still, today was as good as it gets for tree pruning; I don’t want to wait until the buds appear; and I don’t want to feel that I need a nursemaid to do work that I’ve always done alone. Besides, work gives me meaning.