lucky

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First, my apologies for being off the grid for a while. Big Daddy Ape once told me never to spoil an apology with an excuse, so I won’t.

Earlier this year, maybe three or four months ago, I officially came off of all prescription pain medication with the exception of a single anti-inflammatory. My pain started to creep back up in July, but last year at this time, the same thing happened and an epidural cortisone injection shut it down, and I was due for another. I got one a few weeks before I went on vacation.

But it did nothing.

By my second day of vacation, two things had become clear. The first was that my pain was back. The second was that I was not the same person that greeted it the last time.

By sheer factor of being on vacation and not having any obligations, I more or less kept my discomfort at a dull roar without the requisite meds, which I no longer had; pain poked up and ran me down a couple of times, but other than that, it was manageable. When I got home, I begrudgingly made an appointment with the sainted health care practice that has overseen my pain management since its first appearance in 2013 to request the necessary anesthetics and was provided them without further ado. All at lower levels–the pain is not as severe as it once was–but it’s more or less the same regimen and I slipped right back into it.

I’m lucky.

Of course, there are a couple of caveats. One is that outside a spike here and there, the pain is much, much less severe than it was before. That’s the most important thing. Dealing with a daily pain level of a 6 or 7 as opposed to a 9 or 10 isn’t just a different animal, it’s from a different planet. And I know that, and there’s a lot of gratitude surrounding that. The other is that now that I work from home and am in grad school, only taking a couple of classes at a time, I can manage my activities to reflect my daily pain digit. Just being able to do that and knowing I don’t have to go anywhere or be anywhere if I don’t think I can handle it takes a lot of the edge off.

Unlike before, I have a full coping apparatus already in place. I went back to the same physical therapy practice I patronized before, appreciating the vetting I had conducted to find it six years ago. I added but a single provider to the existing phalanx to address the new purported culprit, a herniated disc in my neck. I still keep in touch with my pain mentor, too, and despite the mentor-mentee dynamic, which I insisted on cultivating and she agreed to continue to participate in, we are now close, sharing that set of specific denotations for words and things that close friends have with one another. Most important, she did not shower me with sympathy; I think her response to the return of my albatross was “well, hell.” For which I was immensely thankful. (And yes, the butterfly gauntlet is back, but I’ll save that rant for another post.)

And, I know how my body responds to these medications. The last time, the combination of medication, pain, and fear laid waste to my appetite and turned my GI system upside down; I dropped twenty pounds off of an already normally-weighted, five-foot-three-ish frame in a couple of months. (Oh, don’t worry, it’s all back and then some.) This time, I was on notice that this might happen and have been careful to keep my appetite, or at least my eating habits, more or less intact. Also, I was able to anticipate the effects on my GI system ahead of time and secure the proper medication to avert them right away, instead of playing catch-up, red-queen-style, running in place to keep an already deplorable situation from getting worse.

Most noticeably, the debilitating anxiety of having idiopathic pain is absent. Maybe I’ve just run out of worry for it, having expended so much already. Or I don’t feel like walking around in such an energy-sapping state of mind. Or I’m inured to it. Being in an extreme level of pain for an extended period of time changes the way you think about pain, both consciously and subconsciously. Pain evolved as an alert system that we are getting damaged and need to take steps to address it. But when pain is constant and can’t be allayed, the alarm has to be dismantled so that we can continue to function. Being in a constant state of alertness is exhausting and, after a certain period of time, pointless. This time around, the alarm pinged faintly for a day or two and gave up. Couldn’t be bothered. Other stuff to do. It’s like pain-lite. All of the same stuff, but less sugar, or baggage, if you will. Importantly, less flavor; my daily pain level is pretty manageable with medications, a significant departure from my last experience.

So when my pain spiked the second day of vacation and I insisted on helping Momma Ape unpack despite it, my family was a little unsure how to respond. Shouldn’t you be resting?

I recently started a kick-boxing workout program. Friends aware of my pain are concerned, cautiously offering sentiments like are you sure that’s a good idea?

Well you know what? I like being helpful and I like kick-boxing. I’m too uncoordinated, and my reflexes are too slow, to be any good at the latter, but I like hitting things. (Kind of always have, now that I think about it.) Critically, activity hasn’t been associated with an increase in pain. More critically, I don’t want to stop doing things. I don’t want to give pain the wheel it summarily yanked from me the first time around. This much pain would have done that before, but I have a different scale now and on the new scale, this level doesn’t qualify for a driver’s license.

I’m not saying that people in debilitating pain should take up kick-boxing. (Um, please don’t.) There are types of pain that are severely exacerbated by specific activities. People with those types of pain should avoid those activities at all costs. But just like last time, the only thing that increases my pain is sitting in a chair (or a car) for an extended period of time, and that’s not really something you can adapt around. (Especially me, currently a grad student and working on a laptop for a living.) Other than that, my pain arrives or doesn’t irrespective of what I do or don’t do. So f*** it. If I want to hang out with Momma Ape or hit some things for a little while, why not?

I’m not afraid of the pain, any more. But it’s more than that. A tiny little part of me missed it and welcomes its return. It’s hard to write that out here, after the copious amount of text I spilled railing against it. But save a couple of days of self-indulgent pissing and wallowing, I’m fine. I just slipped back into my old routine like I had never stopped. Pain meds. Ice. Special seat and back cushions. Insurance-mandated-but-otherwise-pointless physical therapy. Requests for assistance with heavy objects.

It almost feels like a skill I’ve honed, dealing with pain. Like I’m good at it. And, as so often happens with skills we’ve mastered, I actually, dare I say, kind of like it. It felt like putting on an old but perfectly-fitting leather jacket. It feels so natural I barely notice the weight. And, I think it looks good on me. I have chronic pain. Incredibly, I missed saying that. It validates me in a way I can’t explain and don’t care to probe, at least, not at the moment.

So there. I said it. Wrote it, whatever. I like being in a moderate amount pain. (Er, “moderate” being the key component in that statement.)

Since the five-alarm pain fire subsided, somewhere around 2016 or thereabouts, there have been a couple of instances where I actually wished I had it back. I longed for the clarity, the framework of priorities it hung, the fences it erected. As an autistic, I’m somewhat agoraphobic. I like confines. I like being able to see and touch the walls. I feel safe in that environment. I am the world’s worst improviser; the number of possibilities is too overwhelming. Pain cuts that number down to a manageable size. I’m not saying I cultivated the return of pain, although I did stop mitigating my activities to work around it once it got below a 2. But since it’s shown up of its own accord, as far as I can tell, I’m happy to bring it in and give it a cup of coffee, like a long lost relative.

The experience of all-encompassing pain made me tougher. Before that happened, this much pain would have been pretty upsetting. Now, it’s meh. Is that all ya got?
I like being tough. I think it suits me. I hated being fragile. It tasted like acid; it felt like being captured in a net. This time around, the pain is like someone who used to bully me in grade school, came back into my life a mere shadow of her former self, and is no longer worth my time.

Pain used to threaten my sense of self, my future. But now, it focuses and clarifies them both. It gives me permission to manage my expectations and not feel guilty about not doing as much as I should, or enough. (Whatever “enough” is, which I still haven’t managed to pin down despite a couple of decades of supposed adulthood.)

I am enough, and the pain reaffirms it. Lucky, that’s what I am. I’m in a situation I’m well-equipped to handle and secretly missed. If that’s not luck, I don’t know what is.

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.
This entry was posted in Book Two - Mind, Setting 2 and tagged , , , , . Bookmark the permalink.

1 Response to lucky

  1. christellsit says:

    Fearless! You are fearless!!! So proud.
    But I am sad that you are in such pain that you need one of the big meds again.

    Liked by 1 person

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