We walk among you. We sit next to you. We work with you. We laugh with you. We drive in the lane next to you and make dinner plans to sup with you. We are at the playground, the grocery store, the movie theatre and the school potluck. I’m not talking about zombies or aliens…just people, like me, who live and endure chronic pain, day in and day out.
Chronic pain is an invisible disability and it’s hard for anyone who is not experiencing exactly what you are going through, to fully comprehend the magnitude of pain. There is an incredibly high level of comfort in knowing that my closest circle doesn’t have to go through this mishegas (Yiddish for craziness) each day. And, there is a level of isolation that comes with the territory.
For me, my pain du jour lives as the legendary ‘pain in the neck.’ I’ve had a lot of diagnoses that run the gamut from some form of migraine, fibromyalgia, myofascial pain syndrome, and occipital neuralgia. As far as I’m concerned, you can call it Fred. Fred hurts a lot. Fred happened from a series of mishaps that caused injury to the exact same spot on my head a few times over.
I’ve had many forms of treatment for Fred. Meds, meds, meds, and more meds—bubkes (Yiddish again), nothing works to stop the pain. There is not a prescriptive drug out there that will kill the pain and allow me to be a productive person on the planet. I’ve had nerve blocks, epidurals, cutting of the nerves (they grew back—little buggers), more nerve blocks, traction, TENS unit, acupuncture, massage therapy (that helps a lot, but tough when you are living lean). In between, hospital infusions, meds, and more meds. Gornischt (it’s like bubkes, only more polite).
I finally landed with an incredibly wonderful bionic solution —an occipital stimulator that resides inside my person. This little technical gizmo (from Boston Scientific) comes with a remote control with four programs created especially for me. It also comes with people who I can call to re-program me. It has gotten me over the worst of it and episodes of horror have gone from 2-3 times a week to about once a month. It has greatly improved my quality of life. I’m grateful, and I still want more.
Chronic pain is exhausting. When I am at my best, I cope–remarkably well for someone who feels like crap a great portion of the time. An outsider would never know. When the pain is at it’s worst, I wear it on my face for all to see. My skin tone shifts to a ghastly greenish-grey. Nausea takes over and no medication can stop the inevitable follow up. That in turn causes greater neck pain and a lovely accompaniment of severe back spasms with a side order of dehydration. Broken further, I lay like a lump, passed out for days in a medicated stupor. Pain is wily and insidious—like water, it will seek new levels
Get a cold, the flu or a bout of sinusitis and you are understandably miserable. People around you can relate to those feelings and they can also visibly see you are in distress. I refuse to be miserable. That would suck for me. Remember, I’m a glass half full kind of person. Kvetching (complaining) all day is not my style.
Are there days I would like to hide under the comforter? Yes. Are there days where I would like my loving partner to remove my head from the neck up and place it on the bedside table? Ab-so-fu#*ing-lutely! She gets it. She sees it. She lives it with me and I love her all the more.
- Humor and laughter
- Creativity and play
- Sleep and rest
- Exercise and movement
Important for laypeople to know:
- This is not all in my head, made-up or exaggerated
- It is at times, depressing to be in pain all the time–enter humor and laughter here immediately
- Depression makes the pain worse, go figure
- So does lack of sleep, and stress—completely unfair!
- If you should find me in a grumpy state of mind, it’s not you. It’s Fred.
Most important to know, I can be happy, joyful, grateful and fun and still be in a severe amount of pain. It’s how I have to roll. And that’s okay, until I find the next thing that will make it better.
What’s the thing that hurts most of all? When either of my two daughters asks me if I’m going to be sick today, tomorrow, at their birthday party, on vacation or on Christmas. There’s must be a cure for that, somewhere.
Thanks for listening.
Your real-live Lego friend wannabe