Here’s what it’s really like to live in pain

I am a retired union plumber with the state of Illinois. I’ve had laparoscopic surgery on both knees, a lower back surgery that required two stainless rods, and I’m not sure how many screws, and three cervical fusions. I now suffer from neuropathy (nerve dysfunction) in my feet.

They’re painfully numb: A shoe could come off, and I wouldn’t know it. I find it difficult to get around — not to mention embarrassing when I go back into a restaurant looking for a sandal.

I don’t understand why in today’s world, with medical research moving so fast, I’m in so much pain.

When people do physical work for 30 to 40 years, accidents happen. Bones get broken, carpal-tunnel syndrome ruins hands, construction work tears apart the entire body. In my case, my left knee blew out (a torn meniscus) during the summer of 1998. Three years later, my right knee blew out. Both laparoscopic repairs by VA doctors were very successful. But in 2001, my lower back began to hurt.

In the world of plumbing, materials are not lightweight. I’m not sure what caused my lower back to start throbbing and aching — was it the years of helping to lug 500-pound cast-iron tubs or the thousands of pounds of pipes and fittings that my coworkers and I installed in the world’s largest heating and cooling station, O’Hare Airport? (A slight exaggeration, but basically true.) Whatever the reasons, my lower back slowly went downhill.

By the summer of 2007, the pain was unbearable.

Just trying to stand up straight was rough. It was time to drop the chiropractor and go for surgery — once more at the VA. I went for a planned spinal fusion of my cervical and lumbar areas.

I admit that I was scared, and I don’t scare easily. My biggest fear was the thought of ending up in a wheelchair with someone pushing me around.

The operation was successful, but it also ended my plumbing career. My doctors prescribed pain medications — Norco, morphine, oxycodone, and a couple of others. These kept me comfortable for about a year; then, my doctor weaned me off of them. Still, I could never return to my trade or lift anything remotely heavy.

Five years ago, I had a freak accident in the kitchen. My nephews were playing with my dog, and he knocked me on my butt. My head slammed into the floor and the dishwasher, fracturing vertebrae in my neck.

Three cervical fusions followed. (During the second one, my doctor said, I died on the table and had to be resuscitated.) Since then, I’ve been living in continuous pain, mostly in my legs and feet. The pain was always there, but it got much better after the surgeries. Now, after five years, it seems to be getting worse. My doctors are trying to figure this out, but it’s been a long road.

The pain is bad enough, but the real killer is sleep — or rather, the lack of it.

Sleep is a thing of the past for me. How I wish I were 40 again, dreaming pleasant dreams, my head filled with creativity. How did life come to this? Through the years, I’ve searched for a higher power, any higher power, praying: If I shut my eyes this time, will I finally fall asleep? The chances are slim. After being awake for three days, I can usually get three to four hours of undisturbed sleep.

Having a wonderful girlfriend helps. I get around OK on foot, but since I can no longer drive, Rita is my wheels. (In addition, she certainly motivates me and tells me to stop being such a candy-ass.) The best thing about her? We laugh a lot together. I love her dearly — and vice-versa, she reminds me.

Pain has only one positive: It reminds us that we’re still alive. Outside of that, it just brings misery, uncertainty, emotional meltdowns, and feelings of growing old.

To deal with the forces that threaten to break my spirit, I often turn to humor. I simply laugh and tell myself, Not today. I’ve learned that using mind over matter does work, to a certain degree. It’s all about discipline, my friends.

My daily routine includes taking my meds (vitamins, magnesium, hydrocodone 10). And I listen to music a lot. My favorites are alternative, folk, some country. Sometimes it’s better than taking my pain meds.

Beyond that, my days are filled with writing. I’m a published author of a trilogy of short stories, and I’m on my third novel, a crime thriller.

I’ve been writing for four years — ever since I figured out that it’s best to stay off my feet. Every day, I simply get dropped off at our local library where, with the help of the fine librarians whom I pester, I’m learning this art and love it. I go in, say hi to everyone, sit at my favorite desk, put on my headphones, and start typing. Whenever I listen to music or nature sounds (storms, hard rain), my pain does subside, clearly because I’m not paying attention to it. When Rita calls to say that it’s time for dinner, I pack up — and the pain comes back before I’m out the library door. But it’s nice to get that break.

It’s staggering how many of us retired people live this opioid lifestyle. Norco, Vicodin, oxycodone … the list goes on.

Sitting in the waiting room at a brand-new VA clinic, waiting for my monthly checkup, I act like I’m reading a book. What I’m really doing is watching my brothers in arms, curious as to what their problems are.

Faces in pain say a lot — and all around me, I see faces that scream lack of sleep, stress, anger, confusion, disorientation, and fatigue. Are they in pain, too?

I find it unbelievable how many people in this country are on pain meds — and how many overdoses there are. Often, the people who overdose aren’t even in pain: They just want to get high and feel good — shame on them. Because drug abuse is so rampant, when I go to the VA, I’m often asked to take a urine test to prove that I’m taking only my prescribed meds and not any street drugs. I don’t abuse drugs or break the law to get them — and I resent being treated as if I would.

Maybe someday the medical doctors will heal my pain, and I’ll be done with these pills. For now, I keep praying.

James Mackey is a patient. This piece was originally published in Pulse — voices from the heart of medicine.

Image credit: Shutterstock.com

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