Life with Chronic Pain

Since this is one of the areas I specifically wanted to write about, let’s start there. This post will discuss sex, in a non-graphic way, below the blockquote.

When I was 21, I had a car accident, the only one I’ve ever had. The light turned green, I moved into the intersection, and woke up sometime later when the firefighters pried me out of the wreckage with the jaws of life. Literally. We’d been T-boned by a young jackass who’d had a few drinks and gone out to drive around with his buddies. He was 18, not even legally able to drink.

For six months, while I recovered, I suffered from neurological effects: amnesia, and to a greater extent aphasia. Now, for me, a language geek from earliest days, aphasia was the cruelest blow. It was hard not getting to play any more hockey that season; I’d been on the school team, but obviously had to quit while I recovered. My aphasia, though, hit me in the place most dear to me: my language ability.

What happened was that somehow, some of my meaning/gloss pairs had become rearranged. I would drop the right word, but from the wrong language, into whatever I was speaking. Я вижу den Hund, for instance: instead of the Russian собаку (accusative case for dog), I would speak the German one, “Hund”, and not notice. This was, obviously, distressing. It slowly faded over the next few years.

My back, though, it began a long downward slide. Initially, I’d had three damaged vertebrae in the accident; the stress on them led to further problems, and now pretty much every part of my spine is damaged. This means that my life is ruled by medications and the times I take them. I covered this very briefly in the panel, but here’s my daily regimen for an ordinary day spent working outside my home. “Smoke” below refers to my use of a certain herbal remedy which is much more common and less illegal here in Canada than in our neighbour to the south. I use it for three purposes: one, as a muscle relaxant; two, as an anti-nauseant; and three, as an appetite stimulant. Without the last of these, I would probably starve to death. Big pain is big nauseating.

Alarm to wake up at 6am. Take a round of meds with a small nosh to sit on them.

Sleep again, if I can, to 8am.

Alarm to wake up at 8am. Consume secondary meds for half an hour, to build appetite.

Have breakfast, shower, get ready.

Grab cane, take bus, arrive at work, work.

Lunch: take a 5mg, smoke some, so as to be able to eat lunch.

Work afternoon.

Afternoon break, smoke to be able to put food on top of afternoon meds.

Take afternoon meds, go home.

Get home, hang up cane, collapse into a horizontal position for two to three hours.

Get vertical, smoke some for dinner.

Eat, do light evening activities.

Before bed: smoke some more so I can put food on top of night meds.

Night: try to get comfortable enough to find sleep, using smoke and/or meds if necessary. Ideally, fall asleep by 2am, to get in at least 4 hours before GOTO 10.

That’s my basic daily routine, if I’m working outside the home. Which is why, as much as possible, I try to work at home. I’m fortunate to have a skillset with which I can do this; this is a privilege many people with chronic pain do not have, as people don’t like to hire us.

You’ll note, I hope, that there’s no mention or really time for sex in that.

Now, as it happens, I don’t have a huge libido. Given the challenges it poses to my body, this is a good thing. Having a high libido would be very challenging.

Because sex is never spontaneous for me. Never. Ever. I have to prepare. I have to take my meds in time, staggering their different onsets so they all hit at the same moment. I have to get at least a little bit intoxicated (not alcohol; call it use number four for my herbal remedy). I have to be sure my partner will be up for it in a couple of hours, when my longest-onset and most necessary med kicks in.

And I have to be aware that an orgasm, an event which can cause my whole body to convulse if done just right, can be excruciating. This part does more than anything else to make sex difficult.

The different onset thing was made much worse about fifteen months ago, when in a very poorly-advised choice, the Ontario government withdrew oxycontin slow-release from the market, and replaced it with ‘oxyneo’, a new formulation which was supposed to be much more difficult to crush and snort. Theoretically, this was to reduce rates of abuse. In fact, of course, the Internet had a solution to how to make them snortable again within five days (you can google a video if you want).

The problem is, the new formulation has two serious downsides. One, it’s not cuttable. We tried, it broke the blade of the cutter. Yay, government made the legitimate users’ lives harder so as to very temporarily inconvenience the abusers. Huzzah.

The second problem is much bigger, and is why there’s a two-hour lead time in much of what you see in that daily regimen. The new formulation takes about two hours to reach full onset. So I take my meds at midnight, and around 2am, i can finally sleep. I take them at 6am, and try to sleep (difficult when functionally unmedicated) until they start to work.

I can tell when they’re working at full effect, btw, from the level of tinnitus in my ears. When they’re fully on, it hits its peak. Small upside from too many years with my Walkman too loud. Yes, I’m that old.

As to those people who say how much they’d love being able to have oxy all the time, let me break your bubble: it’s no party. I get zero euphoric effect from my meds (well, except for that one), and most of the other chronic pain people I know have the same response.

And the downside? Forgive the slightly graphic nature of the next bit, but I think it’s important to know.

The downside…have you ever seen or read Trainspotting? It’s one of my favourite movies and books. In both, at one point, Renton is desperate for a single fix before trying to clean himself up. The only hit he can find in time is a guy who has two opium suppositories. Now, opiates – of which oxy is most certainly one – have an effect on the human digestive system. They basically lower the water content significantly. That means that elimination becomes painful, and constipation more or less constant.

Which means that every couple or three weeks, especially if I’ve had to take extras for something like going to a party or con or wev, I get “Explosion Day”. I spend literally eight hours sweating and shaking, while my body explosively empties itself. It’s awful, and feels worse than it sounds.

That’s the price I pay for taking a minimum of 40 mg (on a good day). No euphoria. Hours of tinnitus and nausea. And Explosion Day. On bad days, I can reach 70mg. Having a painstorm, as I call it when I have a multi-day “bad back time”, is…sincerely unpleasant.

This is often the part where people say, “Oh, you’re so brave for dealing with this!”

But I don’t see it that way. I’m an atheist. This, to me, is the only life I’m going to get, ever. Then I’m rotting meat and hopefully some useful organs carrying on keeping someone else alive.

And what choice do I have? The pain will be here whether I’m brave about it or not. It will be here whether I stay home all the time or go out. It’s always here. I’m never not in pain. I only sleep six hours at a time because that’s the length of time my meds will last as effective help. Period. I have to be completely exhausted to sleep longer.

In a couple of days, I’ll write about the phenomena of insomnialgia and painsomnia, two neologisms I’ve come up with for the interactions of pain and sleeplessness.

2 thoughts on “Life with Chronic Pain

  1. I only have mild chronic pain issues (joint pain and slight disc slippage) which are a walk in the park compared to what you’re describing here. And I’m guessing the invisibility of the impairment makes it even harder to deal with, socially speaking? I remember when I’d gone for an appointment with a well-known rheumatologist here (2-3 month waiting list), I was sitting there watching the other patients who were waiting, and it struck me that outside this hospital room, no one would know that they are suffering. But in there, looking at the tension on their faces, it was clear that they were

    • Oh, yeah, I’ll be writing soon about the list of interventions I’ve tried.

      One of my pet peeves is the “Have you tried…” conversation, where people try to convince me that, y’know, “Reiki or reflexology have come a long way in the last twenty years!” or “Homeopathy’s only gotten stronger since they deduced that if ten dilutions were powerful, obviously TWENTY dilutions would be GODLIKE!” and so on. Even when they’re legitimate medical things they’re suggesting, it’s frustrating, because it feels like I’m being characterized as either closed-minded or in some manner intellectually challenged, to suggest that in 26.5 years, I wouldn’t have tried every medical possibility and a horrifying number of the woo kind.

      Of course, it’s also possible I’m just a cranky old woman with a dodgy spine, and there’s sweet bugger-all to be done about it, unless someone invents a new prosthetic stack of backbones anytime soon.

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