I meet E.J. almost 5-6 years ago on another care related site and we have bonded through various site related blogs, chat rooms, week or monthly competitions, etc. I believe what I noticed about E.J. was her passion for photography and art as well as her outspoken attitude and not just her caregiving and passion. E.J. has approved for me to post her entire 18 year ordeal with chronic pain. Due to the time involved in this interview (personal story) I will be posting it over several days. This also provides time for those working on their questionnaires or story to get them in to me. This is not a way to get you to rush, I want you all to be comfortable with the stories before their posted.
Following is E.J. story in her words and her writing, nothing has been left out. Now here is the look into E.J’s Chronic Pain.
My National Pain Awareness Month Interview with E.J., Part 3
1987 (age 28-29)
5/21/87, 8:07 PM. I was practicing piano tonight when a cramp hit. I popped Naprosyn dry, then had to wait for it to take effect. As the pain worsened I lay down on the stone floor, then realized it was going to escalate. I left Paine Hall and walked through the Science Center, stopping to wait for a spasm to pass, then steeled myself and moved on. Walked as far as I could through Harvard Yard, then stopped — twice — to wait until my legs were no longer seized up. Finally I made it to the Health Center.
“You’ll need to wait here for someone to see you,” the receptionist said.
I was leaning on the counter, holding myself up. “Let me tell you the situation,” I said softly, firmly. “I am in a good deal of physical pain. If I have to stay here I’ll need to lie down on the floor, and then I may have to find a place quick to throw up.”
She started to process papers. “Okay.”
“I’m sorry to bypass protocol,” I said, “but I’ve had this for 17 years and I know what to expect.”
She led me to an examination room, where I lay down. Later I was moved to an empty room to free up the examination room, after temperature, blood pressure, pulse were taken (pressure 90/70).
It’s been a difficult period this month — still, nothing compared to some that have gone before.
7/22/87. I float an armada of antiprostaglandins to make war on a vicious body chemistry.Yesterday, when I awoke to my flow, I headed off the pain with 2 Naprosyn. At 10:15, less than 3 hrs. later, I needed to do the same. Pain returned, escalating, an hour later.
My prescription reads, “Two pills, no more than twice a day.” My doctor said, “Take them more often if you need to.” She hadn’t written this on the Rx in order to avoid problems from the pharmacy.
I’d never followed up an hour after medicating. Not with more of the same pill. This time, after last month’s pain, I said, “Damn the torpedoes.” Six pills in less than 4 hrs., or 3x the prescribed dose.
I was a little light-headed but otherwise fine. I knew, beyond a shadow of a doubt, that I’d stopped a serious cramp. I needed to medicate again at 7, then at 4 this afternoon.
Walking to work this morning, I came up with the analogy of a speeding train. Let’s say that a brick wall stops a train at speed S. Assuming the brick wall is of a given depth and thickness, there comes a point where such thickness becomes meaningless if the speed of the train reaches S+x. To stop the train, one must thicken the wall. When I take medication, all else being equal, it will work up to a given point. Beyond that point, there is no gradation of effectiveness; rather, it is as though I’d taken nothing at all.
Yesterday changed that. I’d sent reinforcements immediately.
8/26/87 1:14 PM. I am lying low. The Naprosyn has begun to make me more dizzy and do less to alleviate the pain. Then again it could be stress. Then again it could be my left ovary, which has been steadily sore over the summer. Then again that could be stress, too.
Today I am in pain, but strong. Merci Dieu. Last night I was a goner, as I was yesterday. I’d simply Lost It — not too much, but enough to get me furious enough at myself to wipe the slate clean, put the skids on this collision between J and me.Yesterday it had all come to a head — the multi-hour phone calls, the endless talk, the endless reassurances. The endless questions. The endless brainstorming. And I, ever eager to be helpful (as much as she; and that’s where we’re both stupid together), took out my textbook on Abnormal Psych. Called upon my faculties of verbalization.
Monday was my return to work. The boss out sick, second-in-command on his vacation. The office short-staffed with an assistant out, too, and me covering for her in the Visitor Information Center. The VIC is a cell inside Baker Library: lovely, beige carpeting, two full-sized desks. No window to the outside, and blank white walls. Maximum security detention for white-collar workers. It’s a new office, not yet outfitted with the amenities.
As a Quiet Space it was ideal — if my period hadn’t begun. Newspapers were everywhere: remnants of clipping jobs. I scanned — leisurely — theWashington Post and New York Times, grateful for the chance to do so. However, there was no water nearby, no bathroom nearby, the door (opened by Facilities after a 90-minute wait) locked when shut unless I left it open. C from the next office was in Maine. I was, save for the occasional visitor who stepped in, entirely alone.
I could feel my period begin, and popped 2 Naprosyn dry at 11. I turned out the light, closed the door, hitched up my skirt and put on a pad. My pain continued to escalate. I popped 2 more Naprosyn at 11:30. The pain decreased slightly, then held — still enough to make me have to stand up on occasion, double over, and grasp the edge of the desk until the spasms passed.
I couldn’t concentrate. I could hardly think. When I answered the phone, my voice sounded far away; what I really needed to do was sleep. When I greeted visitors I had to steel myself against the pain, try not to sway on my feet. If I took more medication I would be further impaired.
I did not have the solace of a day’s rest. I did not even have the solace of a good night’s sleep; no wonder I could not write, concentrate, or be anything other than listless. It is no wonder that I wanted a strong arm around me and a warm, happy embrace rather than protracted deliberations with J on relationships and instant appraisals of where I was with my own. I was too lethargic, too unfocused from the medication and pain combined, too spent.
Rather than tough it out I craved solace — since I usually toughed things out by writing them down. I simply had neither the energy nor the concentration to write what I needed to write, revise what I needed to revise, read what I needed to read. And on top of that there was constant pain, and still my job to attend to, the public relations front to put up.
I’d spent my lunch hour on Monday in the women’s room, bleeding heavily into the toilet and then stretching out on the couch, too much in pain to sleep but at least able to rest in a semiconscious state. Before returning to the office, I picked up a can of soda and fruits and nuts, in case I could eat something later on. Throughout the afternoon I was doubled over in pain and still woozy from medication. When I arrived home I called J, who went on about her doctor’s incompetence, and asked me what I would say. My head filled with words, with worries, with overpowering fatigue.
Afterwards I tried to sleep and could not. I needed to take more Naprosyn. Tuesday I could hardly rise. My alarm went off and I stayed in bed for another hour, then moved slowly, lethargically, sometimes standing still, shaky. Unsteady on my feet. I didn’t know what had happened to my life. I couldn’t do what I needed to do. I was alone. I was drained. I was hurting mightily.
My “vacation” had been filled with calls and discomfort that pervaded my outings because I was damned if I was going to fester in the apartment. I danced with cramps when I could, because if I could not dance I wasn’t living. And I needed desperately to live. I myself was stuck in a pattern of calling and worrying and I saw no way out.
On Tuesday I’d been devastated. I simply needed someone to turn to, on whom I could unload freely for a while and then let it go at that. No probing. No psychoanalysis. No attempts at logical deductions. When an infant is in discomfort, one holds it until it stops crying. All I wanted was to be held and given the chance to cry, and coddled with no inquiries until I stopped crying. That’s all. Nothing complicated.
I spent the morning with tears in my eyes. I was still listless, still in pain, still having to answer the phone in a professional voice that to me sounded completely hollow. My eyes hurt under the bright fluorescent lights. I felt myself under extreme pressure, with no way to alleviate it except to cry. And to cry in the office was verboten.
I called my doctor’s office for a referral to Ob/Gyn. Later I called back, on the verge of tears, for a referral to Mental Health, citing “listlessness, moodiness, inability to sleep.” I knew it was caused by stress and by medical effects; I’d reached a critical break-point. When I held back the tears mightily, my nose began to run. No matter what I did, my emotions would have their release.
I went to the bathroom and cried. I tried to finish the cry, washed my face, tried to fan the red from my eyes. It was no use. I took my lunch hour, lying on the banks of the Charles and crying my eyes out. Nothing seemed to matter inasmuch as what could bring me joy — I couldn’t concentrate on anything. This was not a question of needing simple guidance or advice; it was a question of living through a world that had fallen on me: daily and long phone calls, being a good listener, answering questions, constant pain and discomfort including a new ovarian pain, expectations dashed, side effects from medication and an overall feeling of flatness, exhaustion, helplessness. And no one to turn to, because I really needed the peace and quiet to get through it, myself.
I wept uncontrollably, heaving on the grass. I had no tissues, pulling instead round leaves from the ground to wipe my eyes and blow my nose. Thanking Nature, a tacit understanding that I don’t usually pull the leaves off plants, but they would let me, this time.
I spent an hour taking dried leaves and crumbling them, making a mound of compost over the green leaves with tears and snot. A ritual, something to help me calm down. A repetitive action that I could perform without the need to think. It calmed me, slowly, so that I could return to work. Over the course of the afternoon, my mood improved.
9/1/87. When I am hit with cramps — when I’m lying on the floor or pulling myself along a fence –when I stop in mid-step to convulse in spasms before I can take the few steps until it happens again — I am wholly stoic. I am in excruciating pain, but lucid. What if, now, my pain medication has side effects? I clearly want someone to baby me. And I will clearly have to baby myself and go it alone.
It is when I feel I’ve taken care of others that I feel the need for return care at such a time as this…otherwise I’m happy to be of service, up to a point. It almost seems as though I am best off when I am quiet, isolate. The sailor, the journeyer. I’ve departed from that, felt a new loneliness.
I don’t like to feel this needy — but I’m learning patience here, a blind faith of the heart. I keep reminding myself of this. It is like being a good soldier, following the duty toward one’s development, toward being of service.