My family, friends, and students know that I have “bad pain days.” On what I call “bad pain days,” the things that I can do are limited and my pain is at its worst. However, there is really so much more to it than that. My pain sets off a cascade of effects that make “bad pain days” extremely difficult. I’ll use this past weekend as an example.
The most obvious symptom is pain. Sometimes I’m being attacked with pins and needles. Other times, I feel like I’ve been hit by a bus. Most of the time, I tell people that my body feels like that of an old woman. On “bad pain days,” my pain is at a 9, my blood pressure is elevated, and it’s hard to breathe, let alone function. On Friday, I had a short walk from my classroom to the parking lot. It was a bad pain day. My pain was so intense, so severe, I could think of nothing else. I had to stop several times along the sidewalk to catch my breath. Every step I took was a step towards home, I told myself. Honestly, I thought that this is what dying must feel like. I was on fire and everything in me screamed with the aching. By the time I made it to the car, I was sweating, praying, and half passed out.
Sometimes the pain is so bad, I have nausea and, minute by minute, I have to fight the urge to vomit. Sitting in the car or standing for long periods of time are the worst. I have to take Dramamine or another, doctor prescribed medication during those times. On “bad pain days,” my nausea is so intense that I often cannot eat. On one of these days, the day I made that terrible walk to the car, my husband tried to cheer me up by taking me out for dim sum. I half-heartedly ordered two or three of my favorites, but I couldn’t finish them because I had to rush to the bathroom. I had to take my medicine to prevent further attacks, and took the dim sum to go. It’s never the same reheated at home.
Speaking of medication, I take a couple dozen pills in the morning and at night, and I inject myself with insulin three times a day. My stomach is tender and bruised from the needles. Every time I inject, I bleed. The pills are hard to swallow, literally. My throat closes up and I gag if I try to take more than a pill or two at a time. This is worse on “bad pain days.” Sometimes it takes me 15 minutes to muster up the nerve to take my medicine. On Friday, it was 30 minutes.
Often, I cannot remember what I did the day before. I cannot remember the things that were important to me, like my poetry or political arguments, dates and names. I get things mixed up a lot. It makes teaching hard and learning names of students very challenging, and it can simply be frustrating. On “bad pain days,” it is even worse. On Friday, I met with students individually, so I could learn more about them. By the end of the day, all that I had learned was gone from my brain.
My sleep schedule is all off. It is 3:30 in the morning right now. I slept for four hours tonight after going to bed at a normal bedtime. I “nap” at three to five hour intervals, and I’m always tired. I probably sleep 15-18 hours a day, even on days when I teach. It’s very inconvenient and it’s disruptive to my every day life. It affects my relationships, and I hate it. On “bad pain days,” I can sleep upwards of 17 hours a day because my body is so exhausting and exhausted. On Friday, I had to teach, so I didn’t get a chance to sleep so long. It was difficult not to nod off in my own class, while my students were working! Besides the pain, this fatigue is the most debilitating aspect of my “bad pain days.”
This past weekend, I thought I was OK, but ended up having to cancel plans twice in one day and again the next. My friends, family, and mentors are either very flexible or think I’m a flake, or both. I blame my canceling of plans on my “bad pain days” and try not to feel too guilty. I have cancelled dinner plans, movie dates, and lunch plans. My “bad pain days” have prevented me from going to social events and protesting social justice issues.
Some people think that I can make it to the things that I really want to go to,
but I have really wanted to go to all of these events. I have really not wanted
to stay in my house, in my bed or on the sofa, near tears because I have to
cancel on yet another mentor or another good friend.
All of this adds to my emotional distress, which is already heightened by my pain. It’s easy to get down and feel like a burden and feel like you’re locked in your own body, being held hostage by a force far beyond yourself. On “bad pain days,” I don’t want to get out of bed, let alone pretend to be all right. I am depressed and angry and frustrated and anxious… why did this have to happen to me? Why today? What if it happens tomorrow when I have that really important thing to do? Why can I find no relief? Is there no one who really understands? All of my negative emotions are heightened. When I do manage to function on “bad pain days,” I have to fight with these negative emotions and my emotional distress all day.
I often pretend I am “normal” and that it’s “just the pain” that bothers me on “bad pain days.” The truth is, there is so much more that I am fighting than just the pain. This semester, I told myself things would be different. If I’m having a “bad pain day,” I won’t lie about it to my students, to my family, to my friends, to my mentors. It’s not just the pain. I’ll #ExplainMyPain to them so that they really know what’s going on. Because most of them love me, and all of them care about me. I’m really doing them (and me) a disservice by trying to hide it.