big and small

The pain is back. Nerve ablation or no nerve ablation, my discomfort is driving hard in the wrong direction. Notwithstanding the blank spot covering the inside half of my shoulder blade, the entire rest of the area is sore and inflamed, and it feels as though a knife is being pressed between my scapula and my ribs.

I’ve been taking so many medications to try to sleep despite the pain that my serotonin levels are off the charts, resulting in unabating night sweats that leave me and my sheets cold and clammy each time my pain wakes me up, which happens at least two or three times a night, much to the delight of my cats and no-one else. At least no-one shares my bed (other than the felines); the shame would be intolerable. I change the sheets as often as I can, but I’m too physically messed up to be able to change them every day, much as I wish I could.

In an effort to get my serotonin levels down a bit, I’ve been trying to rearrange my night-time medication regimen, cutting back on this, adding that, moving one thing to the morning, another to the late afternoon. That has not only not had any effect on the night sweats, it’s kept the pain from going down at night (or rather, kept me from being unconscious when it doesn’t).  So as of this morning I’m resigned to going back to the comatose-inducing regimen, during which I will at least only have to wake up damp and shivering once, when I get up in the morning.

To say that this has not had a positive effect on my mood would be a bit of an understatement. My mood is already quite low at the prospect of facing yet another holiday in immobilizing torment. I had thought I would be able to work over the break; clearly that’s now impossible. And so, just like last year, once classes end, I will be in virtual solitary confinement until the surgery, if not beyond.

In fact, I don’t know how I’m going to get through the last week of classes with my pain level this high. I don’t know how I’m going to manage to think coherently through my two-hour long finals, even while standing up. Hell, I don’t even know how I’m going to study for them. Last night I did my physics homework while sitting on my knees on the floor, my papers and laptop spread across the coffee table, because I was too tired to stand and too uncomfortable to sit any other way.

I feel like I’m so close to the end of a race, like it’s the last quarter mile and I just need to drag myself through it, never mind the pain and fatigue, but I don’t know how. I’ve been scraping the bottom of a barrel of reserves that is so dry I’m running on splinters. I felt pretty good after the nerve ablation, but now that feels like it was a lifetime ago, instead of just a few weeks past. By 3 PM I’m so run down from fighting around the pain that I can barely keep my eyes open. But even though I keep going to bed earlier and earlier, even though I’m more and more exhausted each passing day, it takes hours to fall asleep because I can’t find a position that doesn’t hurt.

On the outside, I still look OK. I’m moving a little more slowly, and my cheerfulness (such as it is) is a bit dimmed, but it’s Christmas, and I love Christmas, and I’m leaning hard on Christmas spirit to keep me going. People, good, nice people, ask me how I’m doing with genuine concern. I tell them “I’m doing OK,” or “I’m getting by,” but it’s a lie; I’m not anything like OK. I’m in horrific, unending pain, hour after hour, and nothing does anything more than take the edge off, not heat, or ice or rest or working out or distraction or the phalanx of pain medications in my cupboard.

On the inside, I’m terrified. Because now, I’m not just not getting better. I can tell that I’m getting worse.  And I think one of the reasons I’ve maintained my OK-ness on the outside is that I’m trying to keep from succumbing to the not-OK-ness on the inside.

For whatever reason, increased activity because of the nerve ablation, increased stress and anxiety from the end of the semester and/or the move, medication rearrangement, lack of sleep, or some elixir of all of the above, the pain has significantly increased in severity, high-pain episode duration, and geographical coverage just in the last week. Subtracting the Bermuda’s triangle of empty real estate from the nerve ablation, pain now reaches from my right ear all the way out into my right deltoid, halfway down my back and spine, and around under my right armpit. It is a combination of pressure pain and sharp, slicing agony. There are no conformations that make it better. (There are, however, a number that make it worse.)  This chips away at my already fragile hope that the surgery will make this all go away.

I know I need to get another MRI before the surgeon goes in and debrides and remodels my shoulder blade. This will be a chest MRI, one of the few upper-quadrant scans that hasn’t been done already. It will be the first time anyone’s taken one of the anterior, proximal face of my scapula; shoulder MRIs stop halfway across. I’m afraid of what it will show.  I’m afraid of what it won’t show. I’m afraid it will reveal a worsening bursitis that is slowly destroying the muscles underneath. Or worse, it will show nothing at all, that there’s nothing to fix, and that the surgery will not work.

Honestly, it is the last one that I am most fearful of. The surgeon is confident, and I was confident, at first, but the last week has eroded that assurance. It seems impossible that removing a small, inch-long triangle of shoulder blade could truly resolve the widening trauma pathway my injury is now carving out. Cut it off, I want to tell him. Take it all away. I’m once again courting the patently ridiculous idea of permanently disabling the area in order to get rid of the pain.

I can’t think like this. I have to keep going. It’s only one more week of classes and two final exams. I have to do this; I will find a way to do this, like I always do. Soon enough, I will be in a brand new apartment, in sudden and close proximity to more fellow humans than I even know right now, with a beautiful view of the city dressed up for Christmas in wreaths and lights from my fourteenth floor balcony. And it won’t make any difference at all.

Because my shoulder will be there, too, and so will my pain. I wish I could leave it here, lock it in the closet while the movers are here so it doesn’t sneak onto the truck; tape over the edges of the door frame so it doesn’t seep out and infiltrate the carpets as they’re being rolled for transport; set fire to the closet and burn away every last evil shred of the demon that has plagued me unceasingly for nearly fourteen months. But I could do all of those things and it wouldn’t matter.

That’s what makes it so hard to deal with. Stay in the moment, people tell me, meaning well. But this moment is just like the last one, and just like countless before that, and how do I keep from thinking about the endless string of moments that lies ahead of me, each one a red and hazy slice of an existence so marred by pain that it is barely recognizable as belonging to me; as belonging to anyone, straining credulity that anyone would choose to inhabit it rather than leaving this plane of existence entirely, preferring the spiritual unknown, devoid of physical pleasure, in order to be released from this physical pain.

I hadn’t planned to write a post this week, or next week either, because of my workload with school and the move. But I woke up in so much pain this morning that I had to. I have to get these awful thoughts out of my head before I leave for class. Skipping isn’t an option; there’s an assignment due, although how much of the class I last through after I turn it in remains, as they say, an open question.

And I have nothing else to do.  After sobbing on the floor while waiting for the heating pad to fire up, now I’m just standing here, reeking of dried sweat from last night’s serotonin-soaked, dream-battered sleep, typing and drinking coffee, waiting for the truckload of horse-sized pills I swallowed and scalding heating pad strapped to my back to make enough of a dent in my pain to allow me to shower and dress myself in fake good humor before I leave for class. Even a single level down, from a 9 to an 8, should be enough to get me through my morning obligations. As for my evening ones, I have no idea.  I can’t get there right now.

I have no greater spiritual realization to accompany this post. If I weren’t in so much pain, I might marvel that I have the strength to persist in this endeavor of school and career despite considerable headwinds, that I am able to keep from screaming and crying in public, that I still manage to dredge up the inner reserves to keep smiling and keep plugging away, despite the pain and the black fear uncoiling in my stomach. Maybe it’s because I can’t think of anything else to do. I can’t even think through the rest of the day. I think I can get to about noon. I think I can do that.

About C. M. Condo

I am a late-diagnosed, high-functioning autistic living with chronic pain. I started this blog in March of 2014 as a way to try to process what was happening to me. It is my hope that by sharing it with you, we can both gain something, or at least learn something, from my experience.
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2 Responses to big and small

  1. christellsit says:

    My Sweet Girl, my heart is breaking. I know that you have been far too active what with getting ready to move and school, etc. No doubt, that, in part at least, is responsible for this horrid spike. I am not in your shoes; I can only speak from my own. When I feel good and have a lot of things that I “must” do, I do them as if I am completely healed – as if I am the me of 25+ years ago. After a few days of such activity my body screams “NO! NO! NO!!!!! You are not there yet, you fool!” This message is like a slap in the face, a kick in the gut. It’s hard not to feel depressed and utterly defeated. Hang on. Stop with the packing prep. I know you think that no one else can do what you are doing to get ready for the packing party. Not true. We can come over ahead of time and do whatever you need. Please, ask for help. It would make US feel better at the very least. Wrapping my arms about you in warmth and love.


    • SeeMorrigan says:

      Thank you, thank you, Momma Ape. Thank you for reminding me to ask for help, which throughout this morning’s rant of course never even occurred to me. I love you so much. ❤ -TGA


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