When Accepting Chronic Pain is the Only Choice

Sometimes, I wonder how I got here.

I do not feel like myself.

I woke up yelling at my husband when he dared to scratch his leg at 11:37 p.m. last night. I stumbled into bed drunk from exhaustion, shaky from withdrawal, and starving from an insatiable appetite. As I closed my eyes at 8 p.m. and nearly drifted to sleep, my skin began to crawl with goosebumps and my mind accelerated to a racing speed.

Anxiously alert and hyper-aware of every movement and sound that surrounded me, I knew another sleepless night awaited. And the next day I’d pay the price: shaky focus, volcanic anger, and even more insatiety.

I am not myself, but I’m closer than I’ve been in a while.

Over the last two-and-a-half years, I’ve existed in a medicated state where inefficacy or inadequacy of treatment was augmented only by the introduction of a new type of pill.

The pain is in your mind.

I can heal you.

You are not safe.

Let’s stay the course.

We will up your dose.

Let me add this medication to your regimen.

I will not treat you.

Shuffled from doctor to doctor with each feigning eagerness to help, but when they couldn’t cure my neuropathy, they took little interest in helping me treat it. They favored another pill over a new treatment and more instead of less. And under the intoxication of drugs that zapped my mind, my energy, and my happiness, I lost myself.

A Trade-Off Between Symptoms and Treatment

Sometimes, I wonder how I got here. Did I have some part to play in my chronic pain?

Maybe I could have handled stress better or loved myself more.

Maybe I could have been tougher — learned to meditate through the pain.

Those thoughts run through my mind, and then I find myself collapsed on the ground and rendered paralyzed by the electric shocks that feel like a sick punishment.

No, I couldn’t have been tougher; I was damn tough.

I was tough when I admitted I needed long-term care, when I sought refuge in a hospital, when I underwent invasive test after invasive test, and when I pleaded with doctors for help.

I was relentless. I took the medications as a stop-gap until I could find the source of the pain. Their side effects were temporary and balanced only by the hope of relief.

Did I have some part to play in my chronic pain? Maybe I could have handled stress better or loved myself more.

When There Isn’t an Answer

I was sitting in my neurologist’s office as he reviewed my latest round of test results, but I knew the diagnosis already: idiopathic.

The answer was obvious months before, but I clung to the hope of diagnosis. A diagnosis meant targeted treatment and a potential cure.

Except that wasn’t true. Many of the almost diagnoses would have been untreatable or fatal even. So if I’m honest, what I wanted was an answer and a confirmation that the pain wasn’t in my mind and that I wasn’t crazy.

Idiopathic. Am I crazy?

With no answer, no treatment, and no cure, my short-term palliation would become long-term. But the side effects were too great, the drudgery too miserable, and myself too lost that the only option was to retreat.

Slowly but All at Once

Milligram by milligram, we began scaling back the medicines, but the side effects were swift and furious: throwing up at work, concaving in for hours from stomach aches, growing dizzy while driving, and developing vertigo when horizontal. The medicines haunt me and as I try to break free.

Slowly, one whole medication was dropped from my list. I would have celebrated, but it didn’t feel like a victory, only a next step to repeal more and tempt my dependence to punish me.

Worse yet, the reduction is rekindling pain unlike what I have felt in years, and now I can’t take a narcotic to quell it as it arises. I have to weather it; I try to stop myself from wincing. I’m left exhausted, ill, and in pain, wondering how my body will suffer each time I squeeze another milligram from my regimen.

The Tunnel Was Never a Tunnel

After all of this time, is victory really the return to the pain that erupted over two years ago? I’ll be grateful to have my mind healed, my energy rebounded, and my happiness rekindled, but how much of these have the chronic pain taken?

I gave endless resources to this battle, and I’m returning conquered with the realization that there is no treatment for my pain.

There was never a light at the end of the tunnel. There was never a tunnel. Only a maze that took me nowhere but managed to take so much from me while I was in it.

I do not feel like myself. I may never again be myself. I am trying to find myself.

I am a new self.

For You

I was listening to a podcast once that said we should embrace pain because it was a reminder of our humanity. That person didn’t know crippling pain, or they would have never said that. I won’t leave you with bullshit like this.

I fear defeat, as many of us do. That fear inspires us to pursue perfection. In these battles waged against that which is chronic with weaponry incapable of cure, we want to be the perfect patients — to listen to the doctors, to take the pills, and to fight tirelessly in the wake of sickness.

But maybe defeat here is okay, and we have to learn to accept that.