Chronic Pain Diaries “The Luckiest”

I’m lucky, I’m lucky, I’m lucky. It’s a mantra that I force myself to live by. I am lucky. I am well-adjusted. I’m okay. I repeat it every day religiously because if I don’t, if I miss a moment of it, I run the risk of revolving into something heinous. It’s a something that is a wreck, a destructive force that runs the risk of devouring my sense of ‘self’. I don’t know what I would become, but I can’t find out.

Because I am lucky. I am lucky.

Today is a bad pain day. I knew it the moment I woke up. My skin ached, my bones felt like they weighed a thousand pounds each, and my muscles pulsed. I know these bad pain days better than I know good pain days, if there can really be such a thing. I know them and I dread them because they bring me as close to the edge of the ruination of my ‘self’ as I ever want to come. I continue to remind myself, I am lucky, but somehow the words are more hollow. They echo in my mind, absorbed by the heavy darkness that infiltrates all my senses.

I am lucky.

I never understand how it happens. Yesterday my pain was awful too, but for some reason it wasn’t a struggle. My brain woke up, acknowledged the pain, and then kicked it into the back corner where other, more important things could overshadow it. Funny pictures, my Codsworth FunkoPop arriving, lovely emails from people I work with, dinner with the husband. It’s all good, everything is fine because I am lucky. So what changed in the eight hours of sleep (or lack thereof) that my mind, so irregularly wired to handle the concept of chronic, unending pain, now seems like a mountain I can’t climb, let alone reach the summit to plant my flag? Brains are remarkably fickle things, I suppose.

I am lucky. I am alive.

It’s so damn exhausting. On the long walk through the Plus Fifteen from where we park downtown to my office I listen to my Chronic Pain Mix. Songs that are dark, or peppy, or make me feel good. The Lament of Eustace Scrubb by The Oh Hellos; Alright by Pilot Speed; Safe and Sound by Hawksley Workman. They calm the sense of aggravation, of unease. Some songs are so melancholy, I could revert to a teenage frame of mind and think Yes, this song perfectly fits my mood. Some are so energetic, I wonder how I could possibly feel depressed. Because that it was it is. Depression. A big, black swath of angry, vitriolic depression that clings to me.

I am lucky, but I can feel it in my heart, like it is encased by a cloth that is too warm, uncomfortable. It makes me feel sick. And I can’t express it properly, because for over half my life now I have lived with this I am lucky persona. I thrust out my chest, I bang my drum, and I declare Look at me! I am lucky!

The drumming drowns out the little voice in me that is sad and exhausted by the weight it carries.  Lucky as I may be.

I am lucky.

I see others who are also lucky, but don’t know it yet. I speak to them and listen to their frustrations and I nod and commiserate, because on some small level I understand. Yes, it is overwhelming; yes, it is depressing. Yes, it is never going to end. But you will live. We will live. We are lucky. But there is the part of me that knows that I will never be part of their club. Like high school, like all the places I’ve worked, like any social circles, I sit on the periphery of this world because my day-to-day sensibilities do not lean towards sadness and anger and frustration, but relentless positivity.

I am lucky.

Chronic pain is lonely enough as it is. Social isolation is a monster. But to be isolated further from those who suffer as you do? Unfathomable loneliness that eats away at you.

Still, at least you are lucky.

Chronic Pain Diaries V

I am bored. Bored, bored, bored. I could write, but I need a break from that. I have played my ukulele. I have tuned my guitar. I learned how to play every Soko tab I could get my hands on. I am so completely utterly bored.

I need a job.

The worst part about waiting to hear back from potential employers is the fact that a lot of that sitting around turns into stress, both physical and mental. Sure, I go for walks. I’m going for one as soon as this is finished. But a person with chronic pain can only walk so much. Or sit so much. Or stand stationary in a lineup while they wait to see what everyone else is waiting for (hint: it was a strip club).

This isn’t unusual really. Last semester when I had a couple days off in a row I had to be very proactive about ensuring that I was doing things that were at least slightly physical to keep my body going. I’m no stranger to going for walks even when I have bad pain days. I can deal with that.

But the mental stress? That’s another matter altogether. I recently read an article that talks about the mental stress that comes with chronic pain and how the average person doesn’t tend to consider it. Oh, your body is falling apart? That’s bad. But at least your brain is all hunky-dory, right? The article made a note of saying that studies show people with chronic pain can suffer from an intensity of emotions that can be a challenge to deal with. It’s not so much because they are stressed because of pain, and that stress causes them to go hot and cold at random. It’s actually a physical reaction to the way the neurons fire off at random. People with chronic pain are often overly emotional because their brains are forcing them to be.

I always reasoned that whenever my emotions were playing up I would do a set of things to calm them down. I would work on my giant blanket. I would write. I would draw. I would paint. I would play video games. Mostly I listen to music at a rate that is far too loud (so sorry Dr. Epstein!) There is something about absolutely blaring my Hawksley Workman pain mix that just takes me away. My brain stops firing neurotic pistons and pauses to take in the sound.

The stress of being bored and not having a job and waiting for beta readers to get back to me is certainly causing my emotions to run hot and cold. I know it. Poor Alex has to deal with it, and I know it isn’t always easy. Thank goodness he is patient with me.

Writing hasn’t worked. Neither has knitting or painting or drawing. Even video games are out of the question. With no other option left to me, I turned on Spotify this morning and started up my saved music. Anger as Beauty, embodying my frustration; Oh You Delicate Heart, reminding me that there is always some vulnerability, even when you have a spine reinforced with surgical steel; Ice AgeSmoke Baby, We Will Still Need a Song. They make me feel something other than frustration and pain. There’s a new song, a single from his new album. We’re Not Broken Yet. It seems the most appropriate yet. No matter the pain, the frustration, the deepening sense of hopeless sense, we’re not broken yet.

I am still hopeful that I’ll get a call back from one of the many jobs that I’ve applied to. Until then, I’ll keep walking, keep listening to music and playing games and nervously bite my fingernails while I wait for beta readers to get back to me. Mental stress can be as brutal as the physical, which is a monumental shame because if I don’t have my sanity, what do I have? (Hint: two cats, a loving husband, and this sock full of quarters for slinging at zombies when the inevitable rise of the living dead takes place and we need to flee to the mountains.)