As the title of this entry suggests, I’m going to tell you about my chronic pain—warning, this entry is not for the faint of heart—I’m not whining, and I’m not holding my hand out for sympathy—I’m just giving you the facts from my size 6 ½ shoes, so maybe you'll learn something from me, not just about me. Here read this:
Writing should be useful. If it can't instruct people a little bit more about the responsibilities of consciousness there's no point in doing it. - Edward Albee.Okay, with that said, here goes nothing, this is about Chronic pain:
I feel like CRAP! (She screams at the top of her lungs—or at least she should because there’s nothing more cleansing than a primal scream to cut loose stress, right?)
But I take advantage of it creatively, put it to good use, my current novel in progress, which is a zygote of a novel at just under 100 pages—it’s probably a good 2-3 years away from completion. It has a main character, Eleanor, who suffers from chronic pain. I’m sure I’ll be accused of being biographical—yeah, so, whatever. We all know that it is a common creative practice to work from things that are from your “backyard”—write what you know—and so I use stuff I know for a springboard, and then go off on other interesting tangents from there, following the ‘what if’ and the ‘how come’, asking and answering, creating that all important beginning, middle, and end that are necessary for a novel to come into being. Elly has chronic pain—that’s only part of ‘her deal’, there’s more to her than that—
Part of my “backyard” is chronic pain—some call it Fibromyalgia (FMS) or its kissing cousin Chronic Fatigue Syndrome (CFS)—some people believe in it as a chronic illness to reckon with, while some still wave it off as it being in your head: “You’re making this up to get out of doing something you don’t want to do” (Excuse me, to those people who think that, I say: “fuck you”).
Excuse my dropping the F-Bomb, but I’m not afraid to use it—it’s just a word, a very potent one (that’s a whole ‘nother discussion for a different day).
It’s tough to describe the pain that I have, but I’ll give it a shot. There isn’t a day that I don’t have pain humming throughout my body—I’ve forgotten what it feels like not to have pain. There are days when my elbows feel like they’re on fire, my arms and shoulders feel like I spent the night lugging bricks around, my hips and lower back feel like they’re full of ice cold broken glass, and my legs could snap off at the knees. My fingers sometimes go numb, sometimes just tingle, mostly they're fine. My skin prickles as if someone is poking me with a hot needle, first here, then here, then there, and then somewhere else—thankfully, this isn’t every day or all day. Sometimes I don’t know which is worse, sitting or standing—I try to mix it up throughout the day, hoping to strike a balance so that maybe I can go home from work and NOT have my legs start twitching during dinner. I’m sensitive to light, I get migraines very easily, sometimes they’re triggered by strong smells like perfume, or the stripped pattern on someone’s clothing. (There’s one print in the art collection where I work that I can’t look at for very long because of the fine line work begins to jitter and jump and turns my head into a queasy mush.)
I have to be honest with you, I hate talking about my pain. I don't want pity. Understanding is always acceptable.
What is the scariest pain that I feel? The one in my chest—everyone is scared of chest pain, right? That's the big bad pain. Most people would run to the emergency room if they feel pain in their chest, right? Quick, dial 9-1-1. I get it every day at that magic time around 3-3:30 in the afternoon when the fatigue shroud begins to drape over me; it feels like I have someone of the pachyderm variety standing on my chest. I take the nearest NSAID and it backs off, if I don’t—well, it won’t kill me—I just drag around barely able to think straight, and frankly, I feel like shit. It’s a good thing I’m such a strong-willed person, it’s the only way I keep going forward.
Whatever it is—and whatever the cause—my having it has been a part of my existence for most of my adult life, perhaps longer—it’s just part of my backyard. If anything, it’s made me ‘grittier’, and in the last two or three years I’ve gotten worse, the flare-ups are more frequent, are more severe, and they seem to last longer. Now, I know, some people with this chronic illness are bed ridden and suffer from severe depression, I could be easily like them, but I don’t want to be—frankly, I’m just absolutely pissed that I feel shitty all of the time—I mean, WHY ME? Don’t give me any of that “Everyone has their cross to bear” crap, that’s a bullshit cop-out for the unexplainable “why”. From my years of experience, running around to doctors trying to determine what I have wrong with me, having every test in the world come up negative for some of the possible nastiest stuff, I’ve been told that I don’t fit ‘the mold’ that has been made by the physician establishment for FMS or CFS. (It’d be an “easy diagnosis” if I were overweight, out of shape, and looking to get on disability.) About ten years ago I had a Prozac prescription waved under my nose by one doctor in training who thought I had SAD and I didn’t mince words when I told him to stuff it up his ass.
(EEEK! You didn't! Yes, I did.)
Currently, I’ve got one doctor that believes I have FMS, but the other doctor, the specialist that she sent me to immediately quipped: “I won’t give you that diagnosis because of the baggage associated with it.” I completely understand her reasons for saying this—unfortunately, I’ve been lugging this baggage around for years like some orphan with no home—half the time I question myself: “Am I crazy? Is it all in my head?” No. This is very real—I’m not making it up like one of my novels.
Through it all, I’ve managed to remain upright—get out of bed every day—and although I do get the blues on occasion, I completely believe in humor being a healing factor, and I try to laugh every day (the more the better, if I laugh until I cry, that's fantastic). For medication, I take NSAIDs as needed (some days I do go over the recommended daily dose and become dopey, and some days I can get away with taking nothing because I know what I can tolerate). I take one 3mg of Melatonin to sleep—sleep is VERY important to cope. I mostly move at a slow, steady pace to get things done (getting out of chairs after sitting for awhile forces that mode of movement, but once I'm up, I'm good), I’m methodical and careful, fearing that I’ll miss some detail because of the fog of fatigue that hangs like a shroud over my head, threatening to snuff out my last bit of energy by three o’clock in the afternoon. When I should take naps or breaks, I push on as if afraid I’ll miss something, or not be there for someone who needs me. Some days I’m in so much pain that I’m queasy, those are the days I don’t go to my day job, or call my Fred to come take me home—if I stayed home every time I don’t feel well, I wouldn’t have a job any more.
It’s very frustrating to be doing all the right things, eating right, exercising, keeping a steady routine, going to the doctors for bi-annual visits to monitor my progress or as my Rheumatologist recently put it to me so bluntly—“To keep what you’ve got, you’re never going to get better, you’re only going to get worse.” Okay, so I appreciate her honesty, and she also commented: “You need to reduce your stress level, that'll help.” She didn’t say “quit your day job”, but having a spike in my pain in recent weeks is likely due to stress levels at my day job—I’ll get through it. It’s hard to juggle everything expected of me, but I try, and I’ve learned to say “No” when I feel I’m at my limit of what more I can do.
Everybody who knows about my having this chronic pain are always coming to me with articles about the prescription drugs approved for treatment for FMS, (I thank them for their concern, for their thinking of me, and totally appreciate it) but I’m not willing to deal with the side effects, and I don’t want to take painkillers so strong that I can’t function—and between you and me, and the glow of the computer screen, I wouldn’t trust anything pushed through by the Bush Administration’s FDA anyway. First of all, the drugs are not a cure, they’re a band-aid to appease insurance companies swamped by the millions of diagnosis’s that have been made in recent years. It’s more money in the pockets of the drug companies who have been recklessly experimenting on the American population with quick-fix drugs that only mask the symptoms rather than cure a disease. It’s one thing if I voluntarily sign up to be a guinea pig for treatment, and it’s another to be wrongfully poisoned. Do I sound paranoid? Ach! Blame it on the chronic pain.
What keeps me going? It’s my inspiration for creativity that gets me out of bed every day, even on my darkest days. Sometimes when I feel my worst—going fetal to escape from the constant drone of pain sounds like a fantastic idea; submerging myself into a tub of hot water is considered the perfect end to a long day—along with a good book to read (I’m currently reading Dostoyevsky’s The Idiot—which is a very funny book if you read it right). When I feel too yucky to be vertical, I’ve been known to ‘go horizontal’ on the couch and watch Bill Moyers interview Joseph Campbell in the Power of Myth series, or I’ll watch To Kill a Mockingbird again (I’ve lost count of how many times I’ve watched these)—there’s comfort in taking in these inspirations to fire up my creativity. I’m easily entertained by feeding my brain. Even when I feel too terrible to think, I always keep the implements of drawing handy and my laptop nearby just in case I feel the urge to click keys. These are the things during my low points that help raise me up from what could be a debilitating hole filled with pain—people who do not have the drive or the inspiration to create are more likely to crumble under the weight of pain. What gets me through the day is my determination to live—to be creative—to live creatively. I love to write, I love to draw, I love listening to music, I love my beautiful garden, I love my Fred, our son, our house, I love my dog, Max, and the five cats—not necessarily in that order, if possible, it’s a blanket of love all at once. I even love my job at the art collection (how many lucky people can actually say they love their jobs?) I keep going because I have these things that inspire me to go forward—even if I’m a little slow, cautious, and at times afraid. Fear bedevils me daily—fear of losing the things that I love, losing the ability to do the things that I love, fearing that I will lose respect—fear that I might lose love. So, I try not to dwell on these fears, it's easier said than done. I try very hard not to be crabby—I try not to snap—I try to be more forgiving when I think someone is being stupid. I can only hope that people will forgive me when I decline invitations or at the last minute I don’t show up to parties and dinners—please forgive me when I appear anti-social because I’m not talkative and appear to lurk around the fringe of gatherings looking uncomfortable. Weekends are the precious two days of rest and relaxation that I revel in, and lately, I feel overwhelmed by the number of things I should be doing on a Saturday afternoon when I desperately need to take a nap. You know what—the dust kitties will still be there when I wake up. (Put a leash on that one over there and give it a name, okay?)
One of my mantras to get through each day is: “Everything in moderation.”
Whatever works, right?
Yes, chronic pain sucks. I’m making the best of it.
So that's my story, and I'm stickin' to it.
Here's another sunflower for your enjoyment...
It's getting harder for me to garden every year...I don't want to ever stop...