Blog

I have become a wuss.

There have been signs that I have deteriorated into a state of perpetual whining, what with the repeated mentions about having no energy. It was starting to bug me, so the other day I asked The Boy for more objective assessment of my health status. And he said something interesting. Well, he often says something interesting, but this particular thing was about me, making it even more interesting. Because it’s all about me, y’know.

The Boy said that I was miles ahead of where I was two years ago and I knew that. It’s something I’m grateful for every day, this part where somehow, I keep getting stronger. However, instead of basking in this statement, I asked for details about the past year because to me, it feels as if I never quite got over that flu I had last June. He opined that my energy fluctuations seem different – instead of having two weeks of mad energy and then collapsing for another two weeks, I seem to be more up and down every few days or so. At which point I opined that maybe if I didn’t burn through the energy when I have it, it wouldn’t fluctuate so much and this led to another epiphanette (i.e., a wee epiphany) that perhaps now that I have a better handle on managing what I do in terms of my pain levels, my next challenge is to do the same for energy levels. But that’s not the topic of today’s post. My whining is.

Because The Boy also mentioned that when I am in pain, I seem to not cope as well as I did before, wincing more and being more verbal about my unhappiness about the pain. And I’ve been thinking about that.

I seem to be experiencing a period of doing pretty well. I did pretty well last summer, had a reminder of what flares of both RA and fibromyalgia are like in the fall, but seem to have wandered away from that. It might be that we are having an unusually warm winter, the benefits of ultrasound, a decent level of Humira or something else entirely or all of the above. The bottom line is I’m doing pretty well (and knocking wood frantically to guard against jinxing myself by saying so publicly). Since last summer my body has decided to react really strongly to medication, to the point that I take almost no opioids and when I do need a bit of help, one-third of a Tylenol Extra Strength will usually do the trick. One third. That’s all. If I take more than that, the side effects are very uncomfortable.

Which brings us to the cause of the whining. When you have a lot of pain all the time, it becomes part of the background noise, the soundtrack to your life. When you have a lot of pain all the time, you adjust your experience of it by putting on filters that soften or mute the messages your body sends you. In my post about pain scales, I talked about how people who live with chronic pain hardly ever experience no-pain and therefore, their state of 0 is what for others would be a 2. When that happens, the entire reporting of pain becomes skewed – your 3 is a healthy person’s 5, etc. What has happened in my life is that as the constant high levels of chronic pain became more like constant fairly medium pain levels, my perception of my pain snapped back into almost-normal. All of a sudden, the pain that used to be a 3 is now a 5 and let me tell you, it’s a bit of a shock to have your pain tolerance messed with like that.

I have been listening to a CD called Great Conversations with Michael Enright. Enright is the host of CBC Radio’s The Sunday Edition and the CD is a collection of interviews with some pretty great writers. One of the segments is Enright’s conversation with Salman Rushdie in September 2002 and they talk about the before and after of the fatwa – what happens in the life when you are under the threat of death, shadowed by burly bodyguards and now travel unencumbered. Enright asks “Do those things stay with you? Is there still a kind of symptomology that follows on?” Rushdie replied that it doesn’t. “The urge towards normality is so powerful that regaining normal behaviour happens like snapping an elastic band, it happens more or less at once. There were one or two days where I felt a bit weird standing on the sidewalk hailing a cab after years of having armoured cars, but it felt like a treat … within a couple of days – literally one or two days – the feeling of normality came back, it became just catching a taxi and why isn’t there one.”

He went on to say something that put everything into place for me: “Our desire to go back to what is unexceptional is so great that we adapt back to that with high speed.”

And that’s it. I am currently experiencing a period of the unexceptional in terms of pain levels. It became normal so quickly that my experience of the pain I do have also normalized with the speed of light. I no longer marvel at how little pain I have, instead I wince when I feel stiff and sore. It no longer astonishes me that I can fall asleep – and stay asleep – without drugging myself senseless, instead I complain when I need to take a sliver of a muscle relaxant. Since I no longer have to deal with high levels of pain, when the pain does spike, I feel it much more keenly. As there currently is no need for an ironclad pain tolerance, I no longer have one.

I’m really hoping this sticks around. Although, I might try to be less vocal about how affronted I am when the pain pokes through.