Photo by Maegan Luckiesh on UnsplashIn “The Proper Means of Regulating Sorrow” Samuel Johnson wrote that although most human needs have a theoretical solution—the miser could perhaps gain more money, the glutton more food—for the sorrow of grief:
there is no remedy provided by nature; it is often occasioned by accidents irreparable, and dwells upon objects that have lost or changed their existence; it requires what it cannot hope, that the laws of the universe should be repealed; that the dead should return, or the past should be recalled.
Nerve pain is like that. There is no remedy. It can be dulled with drugs like alcohol and opiates—which don’t actually reduce nerve pain much, though they certainly make the sufferer care about it less—or treated with an anticonvulsant like pregabalin that reduces pain signals. The problem is, pregabalin also reduces other nerve signals. Some people seem to have a reasonable tolerance to it; I do not. Pregabalin, even in small doses, makes me feel like a manatee: grey, blimp-like, and drifting through a dreamy liquid world. Everything requires an enormous effort.
In September I had a pseudo-relapse of my MS. Pseudo-relapse is helpfully explained by International Multiple Sclerosis Management Practice:
Another way MS patients can experience worsening is called a pseudo-relapse. When physicians use this term, we are also referring to worsened neurologic symptoms; however the underlying cause of the worsening is not from new immune system activity or inflammation, but rather from the damage that has occurred from previous inflammation. […] There are a number of stressors that can affect the body and MS in this manner.
My pseudo-relapse was caused by physical inflammation—the truly awful wildfires and smoke that, for 10 days, turned Seattle’s air quality, along with Portland’s, into the worst in the world; plus writing every single day without a break for months—and emotional stress: politics, protest, and pandemic. Also overwork—writing every day, flat out, seven days a week for months. My symptoms were a recurrence of the terrible nerve pain I had six years ago—only, thankfully, instead of the entire left half of my body, it was part of the upper left quadrant: neck, shoulder, a bit of my chest, arm, and hand. And instead of constant, sheeting pain, it was only when I moved. Basically, my pain-gating held—so it wasn’t as bad.
But it was still, y’know, a lot. Bad enough that I needed biggish doses of pregabalin; I turned into a manatee.
Manatees are not known for much more than drifting about looking grey; they’re certainly not known for their writing talents. It could be their lack of thumbs, but also it turns out it’s very difficult to focus on words when drifting about in a hazy world; being in pain; and watching the world burn, literally and figuratively. So while on pregabalin I watched hours of TV, and fell asleep a lot. I did still manage to work, just very…slowly. (Without the pseudo-relapse I would have been done with Menewood long before Halloween.) But then the rain came, the wildfires died down, and gradually my inflammation eased. My pain began to lessen. I could reduce the dosage; I began to wake up. Then one day I realised I had had no pain at all for 24 hours; it was over. I swore I would be grateful for the rest of my life for every single day without pain.
The funny thing about pain, though, is that we forget. As the days pass our minds close seamlessly over the horror and it fades. We can remember that it happened but we don’t feel the memory. I’m guessing this is a necessary evolutionary adaptation. After all, what woman in her right mind would ever go through childbirth twice if the pain wasn’t swaddled in gauze and sprinkled with glitter then safely tucked away somewhere inaccessible? And so it was with me. I wake up in the morning and forget to be grateful for lack of pain. I’m grateful for many other things of course—delighted and grateful every day for sunshine, kitties, Kelley, a roof over my head, hot tea, tasty coffee, cold beer, fabulous cocktails, and a thousand and one other things.
So while sorrow and pain might have no immediate remedy, if we’re lucky they both eventually fade. I am glad. May this be true for you, too.
Nicola Griffith 
I’m so sorry to hear about your difficulties. We here on the East Coast hear about wildfires, and it’s images on a TV screen. While the news accounts talk about the macro of it, we don’t hear about the micro of it. I wish there was more I could do or say to be of help, but please do take care. I hope you can get past this soon.
I am glad for you that your suffering let up. It is odd, isn’t it, how we fail to notice . . . and then abruptly we do! It doesn’t hurt. Sciatica was like that. I sat down on the sidewalk on our way to a reading because it hurt so bad and then one day I realized it did not hurt at all anymore.
While in labor with my second I can recall quite clearly thinking that it could not possibly have hurt that much the first time—I would never have done it again. On the other hand, I was in labor for three and a half days the first time (They thought he was a 2-3 pound preemie. They were wrong, but by the time they did an ultrasound—five and a half pounds—the hospital was slammed so they held me off delivery with drugs for 12 more hours.)
I am so sorry to hear that you have had so much pain. I just wanted to let you know how much you have recently helped me during a very difficult time. My mother was taken into a hospice for the last three weeks of her life due to cancer, and because it was end of life visiting, Covid 19 had provisions that made it possible for me to see her daily, but it had to be me alone, every day for those three weeks. I happened to have your book ‘Hild’ downloaded on to my phone, and during the many silent hours whilst I sat beside her, when she was unconscious, I read your book. It sustained me with its glorious detail of living things, and a period of history I love, both woven so intricately and beautifully together. It lifted me. Even though I still had to face her gradual dying, there was comfort and relief and another horizon inhabited by a beautiful world, beyond the pain of that room. Thank you so much. Please go on writing. You will never know how much you have touched and helped people.
❤
Thank you. Welcome back from the haze…wishing you deep breaths of cool revitalizing air, days free from pain, and rich with creative energy.
Hmm, yes, pregabalin. Manatee mind was a good description for that year, and with the weight gain I would have finished up looking like a manatee if I hadn’t prevailed on my GP to switch me back to my nice, largely-side-effect free butec (and fortunately I lost the weight as easily as I gained it). Ironically the mental effects were masked until afterwards because I didn’t have the brain to think about them, but fortunately deciding I needed to address the weight gain didn’t need nearly as much self-awareness. It’s an effective drug for a lot of people, but the side-effects can be pernicious.
Different causes, but my last major flare-up hit roughly the same area as you and it was a whole lot of no fun. I hope it didn’t cause the same issues sleeping as mine did, not moving your shoulder when you sleep is a big problem if you’re a side-sleeper (I did work out a solution later). Here’s hoping any return-engagement is delayed indefinitely!
Yes, I had a dreadfully painful eye injury in 2016 that needed surgery, twice, and the pain took at least six months to subside into discomfort and then eventually to go.
I’ll never forget, but no longer feel, the pain in my head.
It’s a very worrying place for me to experience pain because it frightens me as well, due to being so near my brain. And, in fact, the optic nerve goes directly into the brain and since the injury occured in a very muddy place, my allotment, I feard infection penetrating there.
Mum had a brain tumor, so you know, you wonder in the small hours if there are going to be further complications that could cause years of anxiety and medical interventions.
As it turns out I’m pain free now. Just in need of a prosthetic eye cap to fit over the shrunken orb that was once a very useful part of my body.
Sorry to hear about your pain and very glad it’s gone. Like many I’m seriously looking forward to reading ‘Menewood’. All the best for it’s publication.
@Caroline: I’m so happy that HILD helped.
@DavidG: Ohm the weight gain. Yes.
@Heath: I’m working on the rewrite now. Publication is going to take a while…