It’s this @*#!! rheumatoid disease, which is making my hands feel like padded garden gloves filled with gravel, sand, and shattered glass. My feet are OK, today, and the rest of me feels just generally tender and battered. I figure this is how I'd feel after going a round with Ali and recuperating for a month.
All kidding aside, I’m doing OK.
No catastrophies here. So, what’s with the headline? It refers to a similar word used frequently in the world of pain management: catastrophizing.
I get this. Not long ago, while forcibly weaning off opioids and looking squarely at a future without them, I catastrophized even though I’m a naturally sunny, optimistic person. Suddenly, there was no light at the end of my tunnel, and that scared me. I mean, this is me! I always find a bright side! I even disgust myself, I’m so cheery. I can’t help it!
But this time, facing daily, unpredictable, moment-by-moment pain without being able to blunt it in real time with medication was demoralizing. I was struggling. My government (the Centers for Disease Control and Prevention’s Opioid Prescribing Guideline) and my doctors were telling me, earnestly, that I could handle my pain—forever—simply by treating the underlying disease, first, and then with exercise, good nutrition, mindfulness/cognitive behavior therapy, and meditation. If I needed to (and could afford it), I could add physical therapy and acupuncture, too.
Let’s Get Real
In real life, it hurt too much to do more than some gentle stretches, most days. I tried to eat right, but my success varied from day to day. I care for my elderly mother 24-7. She loves tasty foods like ramen, canned chili, fried chicken, cookies, and donut holes. She is not into stir-fried or steamed veggies, skinless chicken breasts, or brown rice. While I can and do eat those foods, frankly, I don’t blame her.
And I’m the Mindfulness Queen. I started practicing mindfulness as a form of self-defense about a year after I received my RD diagnosis. I made myself slow down and notice the beauty in the world around me, to live in the moment even as the pain and disability of my rheumatoid disease often narrowed my world down to me, a blanket, and the music in my earphones.
These things help—a lot. Distraction—forcing my mind off my pain and onto something else, like music, or a book, or a movie, or writing, or sketching—has always worked best for me, as I can sustain it the longest. I've meditated off and on over the years, as well.
Still, I always knew that if my joint pain got too big for me, I could rely on some form of opioid analgesic to smooth the sharp edges off it. Then I could move on with my life. I could be productive. I could be happy.
My doctors were not free with these drugs, not even three decades ago. They were cautious. They made sure I understood that they were harmful if misused or abused. They prescribed them in limited amounts. We worked together to control my rheumatoid disease and pain. We were a team. But these drugs were suddenly verboten.
So, believe me, I tried hard not to let going without them scare me when the big pain hit. “Hey, this pain is making you stronger!” my mercilessly cheerful inner voice shouted at me, trying some desperate Cognitive Behavior Therapy. “Be proud! You’re a true warrior!” When I whined anyway, it shrieked “Hey! Not many people out there can handle this @!&*! like you do!”
But my other mind-voice, the quiet one that faces facts and worries about them, whispered “This hurts so bad, Wren. Can you endure it for the rest of your life? How?”
Today? This moment? I don’t know the answer to that.
What I do know is that the alternatives to pain-relieving opioids pushed by the CDC in its guideline can and do work. Nutrition is good. Exercise is great. Good sleep habits, ditto. CBT, mindfulness meditation, and Therapeutic Neuroscience Education (TNE) are incredibly useful for controlling chronic pain. I can’t deny that thinking more positively about my pain, circumstances, and life is better and healthier for me than descending into hopeless, catastrophic despair.
There’s just one catch. You must constantly drag your mind into the here and now—the present moment—in order to make these alternative pain relief methods work.
Living one day—one hour, even one minute—at a time helps. That way you’re not allowing your mind to range ahead into uncharted territory. See, it’s there, in the amorphous and unknowable future, that your thoughts can hurt you right now, today.
But let’s get real again. Few of us have the skill, the will, or the leisure to meditate continuously. We have jobs, kids, husbands, wives, lives. And while it’s good and healthy to push away negative thoughts like “I can’t handle this” and “I hurt so bad! How can I get through the rest of today, let alone tomorrow and next week and, well, forever?” the fact is that sometimes we just can’t. Sometimes we must face those thoughts head-on.
Because these are reasonable questions when you’re living with a chronic disease as painful and physically disabling as RD. I think the CDC needs to pause its battle against opioid abuse long enough to see and do something about the catastrophe they’re causing in the lives of responsible patients when they deny them these useful and benevolent drugs.
Have you managed RA fatigue better than you used to?