It’s 7:30 AM and I do not want to be awake. I’ve been up since around 5:15 (5:12, to be exact), and while I did manage to doze fitfully until 6:45, the sharp stabbing under my right shoulder only permitted partial unconsciousness. I might as well have gotten up at 5:12; I don’t feel any better for having spent the extra hour-and-a-half under the covers.
I don’t like the new sleep medication at all. If I take it by itself, it makes me spacey and slow but doesn’t actually put me to sleep. If I take it with the other one, as I did last night, it renders me unconscious but I wake up six or seven hours later nauseous and mentally out of it, like having a hangover without the headache. I almost never wake up feeling rested, no matter what I take. Most of the time, going all the way back to when this whole mess started back in October, I’m at one of two extremes: coma or doze. True sleep is maddeningly elusive.
I may have a diagnosis, but I’m no closer to repair. The cortisone shot I received this past Friday reduced a fair amount of swelling and enabled me to turn my head and look over both of my shoulders for two whole days, something I haven’t been able to do since last October. In response to having abused the privilege, my muscles are now berating me for it as they return to their former upright and belted-in positions. Additionally, the stabbing under my scapula never really went away despite the range of motion improvements. I’m supposed to call the orthopedist at 8:30 this morning and convey this information, and see whether he wants me to follow up with an arthroscopic MR scan or some other form of diagnostic unpleasantness.
I am nervous about it, like I will somehow be a nuisance when I call, despite the fact that I’ve been specifically instructed to do it. And I have this decidedly unuseful habit of inflating good results and diminishing bad ones when reporting my symptoms, a habit I very much need to break. This morning will be a good chance to practice some unfiltered honesty, even if I really do not feel like forcing myself to be calm and thoughtful to whichever staff member answers the phone. I have to remind myself that the diagnostics are not generally all that unpleasant. They often come with a nice big syringeful of numbing medication for my shoulder. Friday’s injection was no exception, and Friday night, I got the best sleep I had in weeks. That is probably not a coincidence.
Along with the cortisone shot, the high from my new diagnosis has worn off, too. My neck is still a mess, my right shoulder is still clawing at me, my left one is still annoyed at the extra workload, and one of my upper thoracic vertebrae has joined the party as well, poking at me when I hold my head in any one position for too long. My continued lack of restful sleep has pushed me past cranky and I’m on the verge of downright bitchy. I had planned to go to the gym, but my energy is at far too low an ebb for any such thing; in fact, my body is begging me to go back to bed. I would, but there’s no point. I tried that yesterday and got nothing out of it other than an extra hour lying on my back with my two tabby cats. They slept. I didn’t.
I keep thinking about my conversation with Momma Ape from a couple of days ago, about how I feel guilty because I now have a diagnosis, while so many other chronic pain sufferers are still locked in their round, doorless rooms. And even though she is one of those in a circular cell, she wasn’t having any of it. “No, no, no. Your pain has been constant. Right now, you’re in enough pain to keep a regular person home and in bed; you’re just used to it. You’ve definitely earned your place here.” And she’s right. (Dammit, she’s always right.) I’ve paid my dues – am still paying them, in fact, and will be for some time yet.
But our minds have a way of softening even the sharpest memories. A year from now, when my shoulder’s status has been reduced from unrelenting pain to occasional annoyance, will I remember all of this? Will I remember the days before the nerve ablation, lying on my back in the middle of the afternoon, pain filling every crevice of my consciousness? Will I remember how I felt this time last week, shrunken by despair, walled in not just by pain and fatigue, but loss of the hope that my life would ever be any different? Will I remember how I feel right now, exhausted, nauseous, my brain and stomach locked in a struggle with my shoulder and neck to see who can cause me the most discomfort?
Right now, it is easy to recall the feelings of overwhelming pain and despair. I don’t just get bitchy when I haven’t slept, I get emotional and fatalistic, too. I readily empathize with my pre-nerve ablation self, when my stingy resources were barely sufficient to move me from one moment to the next. I still cannot go back and read some of my early blog posts; the memories are like blades, shredding the new skin that has just started to knit over my mental wounds. But what about a month from now, or three months, or six? Will I look back on this and doubt my own sincerity? Will I see hyperbole where the truth once sat? Will I be embarrassed at the naked outpouring of anger, sadness, pain, and resentment?
Doctors ask you to rate your pain level on a scale of 1 to 10, “1” being no pain at all, and “10” being the worst pain you can imagine. But truth be told, most of us (myself included) are unable to conceive of a pain level any higher than the worst one we’ve ever experienced. My nerve pain was a 10 for the first several weeks after this happened. But for someone who has sustained a more serious injury, that same pain might only qualify as an 8, or even a 6. Even for me, up until last October, the high water mark was an ovarian cyst that broke and bled while I was sitting in an algebra class in high school. That was a 10 back then, but right now, it probably wouldn’t clear a 5. Twenty-five years removed, I have to admit I suspect my fifteen-year-old self of overreacting, curled up on the exam table and moaning while Momma Ape squeezed my hand.
Something else Momma Ape told me is that despite the fact that the ten-point scale is different for everyone, it’s still important to the doctor, who needs to know how much pain you feel you’re in because of its effect on your physical and mental state. My pain was real when I was fifteen, and it’s real now, and trying to figure out how someone who isn’t me would rate it serves no purpose whatsoever, especially considering that no matter which end I come at it from, I tend to choose the lower of the two numbers.
Before, I used to assume that someone else would think it was less painful and adjust the number down. Now, I assume that someone else would think it was more painful, but since my own number is lower, I go ahead and stick with that one. Neither of these is actually helpful to me. In fact, Momma Ape has repeatedly advised me to inflate my ratings to reflect my current higher-than-average set point. Just because I can function at the level I would call a 6 (well, sort of function, anyway) doesn’t make it acceptable, or even accurate. My 6 is now probably an average person’s 8, and it doesn’t do me any good to downgrade the rating because of some leftover, pointless desire to appear stoic.
In fact, what the number should reflect is not my level of pain, but my loss of quality of life. Right now, the latter strains the definition, and it’s long past time I learned to speak honestly about it to the doctors and therapists I interact with. Because if I claim it’s not that bad, who are they to argue? They’re not inside my body. They have to take me at my word; there’s no other way for them to get that information, especially now that my physical reactions to pain, such as flinching and facial expressions, have all but disappeared.
Pain doesn’t come with alarms and flashing lights that are visible to the people around us, but that doesn’t mean it’s not there, whatever happens to be going on in our heads in the moment. It’s important, and it’s real, and it’s worth fighting to alleviate. Maybe my lack of sleep is affecting my pain; in fact, it’s likely that it is. But that doesn’t make the pain any less valid. If anything, it makes it all the more urgent that I enlist someone, or multiple someones, to do something about it.
It’s 8:30. Time to call the orthopedist. I am in pain, right now, and it’s messing with my appetite, my sleep, and my state of mind, right now. If I don’t accurately convey that, I can’t expect anyone to feel motivated to fix it. And I deserve to have it fixed. I deserve to be in less pain. Here in the land of chronic pain that I refer to as the Ape Preserve, we all deserve to be in less pain.
Don’t stop fighting now, Ape. You’ve come this far. Take a deep breath, pick up the phone, ignore your mind, and tell the truth.