GPS Directions to a Pain Battle
When Chronic Pain and Caretaker Collide
1. Start out going east on your street toward the avenue. (0.23 miles)
Centralized pain disorders like fibromyalgia take a toll on the brain. Nerves prone to scream at any input - bumps, chills, brushes of clothing - trick the brain into discounting any pain as “fibro.” I’ve learned to talk myself out of fretting over twinges or winces. I FEEL the ache, of course, but I follow it with a heated mental argument to calm the fuck down.
Whatever my central nervous system is trying to tell me isn’t real. Or, it IS, but it’s overblown.
The brain retains control, though. While I’m debating the validity of a stabbing sensation in my midsection - dead-center of my surgical site - the neurons in my skull send signals to the muscles of my face, shoulders, and hands. I try dismissing the pain, but my face twists in agony, my body curls forward to protect the source of the torment, and my hands dig fingernails into my palms.
Other people translate those signs as loud signals of INTENSE, UNBEARABLE PAIN.
No matter what I try to say. No matter how often I protest a contradictory answer.
2. Turn right onto the boulevard. (0.69 miles)
Co-workers and friends frown and suggest sitting down, going home, or calling the doctor. But they won’t interfere further when I grit my teeth and assure them I’m fine. After so many years of flares, they trust me to know my body and my limits.
It’s foolish behavior. And I don’t know who to blame more.
My husband, however, is a different story. He’s spent less time with me, but he’s asked more questions. So he pays more attention to my body’s cues and less to the words from my mouth. It means more work for me, coordinating pain signals and physical controls. I have to hold my body rigid and THINK of the expression on my face.
It’s harder work than most people think. (Get it?)
Then again, plenty of people assume you adjust to pain over time. The longer something irritates your body, the more you get used to it. Bullshit. Ask anyone - whether they experience chronic pain or not - and they’ll assure you differently.
My surgical site is burrowing a hole to my spine.
A single innocent cough sucks the air from my lungs. I can’t breathe - and I can’t orchestrate the complicated symphony of control. (Damn aerobic organism that I am)
My brain reasserts itself, and my muscles betray me.
“We’re going to the hospital. Now.” My husband presents me with my jacket and shoes, goes so far as to lace the sneakers on my feet. Such behavior is only cute when you want your beau to do so.
3. Merge onto the highway (Toll). (3.03 miles)
People with invisible illnesses spend uncountable hours in medical offices and hospitals. Lab work, imaging scans, waiting rooms - they’re our (unwanted) second homes. And I don’t know anyone who looks forward to them. I hate every visit.
Given a choice between scaling Mt. Everest in a bikini or going to the ER, I’ll do the climb. (Yetis, avert your eyes)
But Tim isn’t interested in my opinion.
The monster chewing on my abdomen takes most of my energy, but I still manage to drag my feet as he pulls me out to the car. I taste blood as my teeth sink into my bottom lip when he fastens the seatbelt over my middle; it sits across the surgical site.
“That’s why we’re going,” he says. His tone is firm, but his face is pale.
I’ve already looked beneath the gauze bandage, noted the angry swelling around my dissolvable sutures. The skin’s red but no worse than the day after surgery. And the dressing showed nothing more than a few drops of clear drainage. Like most frequent fliers to the OR, I recognize the signs of a routine surgical site.
“They’re not going to find anything.” I can’t sit up well, but I’m determined to put up a fight. I hate the ER. I hate the way doctors immediately lump pain into the categories of hypochondriac or drug addict.
The moment I admit I’m out of Vicodin, they’ll dump me in the latter. (Fuck you, Sackler Family)
“You can’t cough.” His hands grip the wheel, his fingers shaking with nerves. “You can’t even sit up. The site’s swollen. Something is wrong.”
“This is a waste of time.” I want to fold my arms, act sullen, but my brain’s wrested control away. My fingers dig into the seat.
“And if you’re wrong?” He flicks a worried glance my direction. “If you’re wrong and this is serious, what then?”
“I’m never wrong.” It’s part of my cute repertoire. I’m always right. But the words come out weak, my face creased as something twists inside.
“You are this time. And I’m not going to watch you die because of it.”
4. Take the south exit. (0.39 miles)
Tim’s been to the ER with me once before. I was afraid of another kidney stone. (In retrospect, the ability to stand should have tipped me off) He spent hours holding my hand as I lay on my side, crying. All so a doctor could smile and tell me I had crystals so tiny I couldn’t possibly feel them.
Medical professionals love telling fibromyalgia patients the boundaries of our pain limits.
He understands my fears of doctors and their doubts.
“I want to go home.”
“Complain one more time, and I will start speeding. Then we can get pulled over, and I can explain to a police officer why you’re being stupid. Maybe I’ll get an escort to the hospital.” Tim is one of the most soft-spoken people I’ve ever met. The snap in his voice makes me blink.
It also challenges every antagonistic part of my brain and body. “Take me home.”
He flips the turn signal on, the car sliding onto the exit ramp. “Cough.”
“Cough without wincing or doubling over, and I will turn the car around.”
I have non-cardiogenic vasovagal syncope - the fancy way of saying my random fainting spells aren’t due to my heart. (My occasional arrhythmias don’t count) Passing out isn’t in my top ten, so I’ve learned to recognize the symptoms preceding an episode. Coughing to raise my blood pressure and heart rate occasionally heads things off until I find somewhere to sit.
He knows I can cough on command. So does my body.
Every muscle fiber from my toes to my skull locks as the thought skitters through my brain. I’m nothing more than an observer, a watcher inside an automaton.
He pats my hand. “We’re almost there.”
5. Turn right onto Medical Parkway. (1.85 miles)
Everyone I speak with displays immediate sympathy. They listen to my descriptions of the pain and my surgery details. Nurses examine the site, frowning. It takes time, of course, but I’m scuttled back to a room in a relatively quick fashion.
Tim’s more generous than I would be when the doctor orders a round of morphine and a CT scan. He doesn’t say, “I told you so.” I get a touch of revenge when my prophesied heart stop happens as the morphine hits my circulation. (Always a fun two-second experience)
He saves the words for when the report returns: A seroma.
After years of laparoscopic procedures through my belly button, my body has decided enough is enough. The CT only shows fluid, though, not whether it contains infection or not. So the doctor orders hospitalization until my OB/GYN can assess me in the morning and decide how to proceed.
I dislike hospital stays even more than ERs. I protest, bargain, and beg. But my record already demonstrates an inability to control the pain.
My nervous system has betrayed me.
And Tim casts his vote. “Listen to the doctors. I think you should stay. If this is an infection, you need the antibiotics.”
6. Hospital is on the right. (0.10 miles)
My OB/GYN elects to take me back to the OR. Two days of IV antibiotics don’t shrink the fluid pocket, which bumps his concern level. I find amusement in the fact surgery is the method of choice to correct a surgical complication, but it’s the first thing that makes Tim nervous.
Or maybe it’s the fact this OR is in the hospital.
There aren’t any bacteria in the fluid, luckily. But I spend weeks afterward with a hole in my abdomen. The pocket under the site is too large to close properly. So second intention healing is the choice of the day. (No sutures - just an open wound treated with daily wound dressings)
But the debacle teaches me the importance of having Tim in my life. He was right to take me to the ER. (Admitting that hurts as much as the seroma) He also takes the time to learn how to help me with the dressing changes.
And he never gloats.