Raider and I had been together not quite a year, I think. I'd had headaches before, very occasionally, and had always been able to get rid of them by taking over-the-counter meds like Tylenol. More often, I simply napped; I had found that a nap as short as 10 or 15 minutes would relieve the mild, occasional headaches I got.
So when I got a headache, I didn't think much of it. I did the usual things: napped, took some meds, ate protein, had maybe a little extra caffeine.
But it didn't go away.
I took more meds. I took more naps. Raider massaged my head and neck. One feature of the headache was a feeling like a metal spike was impaling my left temple; Raider and I played a visualization game where he pulled out the spike, hoping that if I imagined it gone I could fool myself into feeling better.
Eventually, I saw my doctor. And some other doctors. And tried a whole lot of different medications. A couple of years into the headache, they sent me off to a pain clinic for a week. This is where they send you to learn how to live with pain you're not ever going to be able to live without.
Over the years, I have sometimes been aggressive in trying to improve my headache, and sometimes not. Medications have side effects that are sometimes harder to live with than the headache, and other treatments also take effort I don't always have the energy for. Still, when a headache lasts this long, you have time to try everything. I've done acupuncture, massage, physical therapy, esoteric healing, herbs, and a bunch of things I don't even remember. I've done rigorous eliminations diets to try to find food triggers. For years, I wore a mask in public to limit my exposure to perfumes, a major trigger (fortunately, during my first pregnancy, this trigger became much less deadly. I am still sensitive to perfumes but not nearly to the degree I used to be).
Doctors usually use a 10-point scale for pain; my current neurologist uses a 5-point scale. For me, though, my headache meaningfully has three levels:
1. It's there, but I can easily be distracted from it and can participate more-or-less fully in daily life. At this level, I can feel the headache if I think about it, but if I'm busy, watching a movie, talking to friends, or reading, I don't notice it. It doesn't intrude itself. It just sits quietly in the corner, not drawing attention to itself.
2. I can't forget it's there, but I can still function. I can do my work, hang with my kids, enjoy myself. But I know I have a headache the whole time.
Actually writing "enjoy myself" made me realize there's a level sort of between 2 and 3, or in the area where they overlap, which is where I can function, but only with great effort and not at full power. And I'm not enjoying myself. I remember throwing a birthday party for one of the kids with pain at this level. Games were played, ice cream was eaten, messes were made, presents were opened. When the last guest had left, I turned to Raider, said, "I am a fucking superhero," and burst into tears. Sometimes when I'm functioning like this, people can tell something is up with me. Sometimes they can't. Often, I don't want them to know, because dealing with sympathy is hard in its own way.
3. I can't function. I need to do as little as possible, and sleep a lot.
Somewhere, there is a reader who has just realized that the implication of what I've written is that I've had a headache for over 20 years. Can this be true, that reader wonders?
Yes. Yes, it can.
So, back when I used to come see you perform at the Detroit Women's Coffeehouse, imaginary reader asks: You had a headache then?
Yes.
You worked on the security crew at the Michigan Womyn's Music Festival for years! Round-the-clock shifts! Are you telling me you had a headache that whole time?
Yes, that is what I'm telling you.
You've been pregnant twice! Given birth twice! Adopted once! Cared for three newborns! Surely you didn't have a headache that whole time?
Surely, I did.
You did a reading at my wedding...
Headache.
We danced together!
Headache.
*whispering* We had sex.
"Not tonight, dear, I've got a headache," is an excuse that holds no water around here. At least, not unless we're dealing with a level 3 flare-up.
What has made all of this possible is that I live much of my life at low Level 2 or below. It has been interesting to me that, although I always have a headache, I know many people who have headacheS, and theirs are often much worse than mine. Raider used to have migraines a few times a year, and he couldn't function at all during them. He had to lie down in a dark room. Often he vomited. I can remember taking him to the ER on at least two occasions because the pain was so bad and he was dehydrated from throwing up.
I've never had to go the ER for a headache.
A few years ago, someone I knew began having Cluster Headaches. People with cluster headaches often have years in between bouts. But during the weeks or months that a cluster headache persists, the pain is excruciating. I haven't experienced anything like that.*
My headaches have a pattern. It's unpredictable, but it's a pattern. I live most of the time at what I call my "baseline," which is the ordinary daily level of pain. My baseline can vary; a couple of years ago, under the care of an excellent new neurologist, my baseline got so low that I was this close to putting a zero on my daily headache log. I could never quite bring myself to do it. It felt too much like tempting fate. And, soon enough, my baseline drifted up again.
Still, on the medication regimen my neurologist and I trial-and-errored our way to, my baseline is generally a comfortable Level 1.*
My life is punctuated by flare-ups. If I tell you I have a headache, it's most likely during a flare-up. Many folks don't know that I also have a headache in between flare-ups; I remember one of my best friends telling me a few years ago that even she often forgot about it. It isn't stoicism that keeps me from talking about it all the time. It gets tiresome answering, "How are you?" with "I have a headache!" And if I'm at baseline, and functioning pretty well, "I'm doing great!" is true.*
Historically, a flare-up lasted 4 or 5 days before my headache dropped back to baseline. Under the care of my neurologist, for the past couple of years I have had rescue meds that can head off a flare-up before it really starts, or shorten it to one or two days. This has been amazing! I feel the early warning signs, I take my meds and a nap, and I'm good to go.
Under this regimen, traveling to conferences, something I love, has become much easier. Travel itself is a trigger; so are lack of sleep; bad beds; the increased exposure to perfumes, fabric softeners, and cleaning supplies that come with travel; and stress (even the good kind). A week at Friends General Conference Gathering, for instance, used to mean increasing pain throughout the week, and days of recovery afterward.
Not anymore. For the last couple of years, with my medication regimen and some reasonably judicious attention to self-care, I have been able to travel without ending the trip less well than I began. This is wonderful.
Unfortunately, about six months ago my rescue med stopped working. I don't have a lot of other options. For instance, I have a bleeding disorder that rules out most non-steroidal anti-inflammatories. Fortunately, I haven't had many flare-ups. At my regular neurology check-in on July 9, I showed the doctor a log in which I'd been comfortably at or below baseline for weeks; I'd even gotten through a whole menstrual cycle without a flare-up (did I mention hormones are a trigger, too? No? There are so many it's easy to lose track). We were smug and self-satisfied. He gave me a new prescription, for a narcotic pain reliever I could take on really bad days if my rescue med let me down, and we set my next check-in for October.
Two days later, a flare-up started.
It hasn't stopped yet. My log shows severe headache on 25 of the last 28 days.
Footnote number one: "I haven't experienced anything like that": At least, not until this most recent flare-up, which is unprecedented for me.
Right now, my neuro has me on phenobarbitol, an anti-seizure drug, in an attempt to interrupt this flare-up. It seems to be working; three days in, I am beginning to feel more like myself. On the other hand, I'm pretty significantly impaired by the phenobarb. I can't safely drive, it's difficult to stand and walk around, and I'm sleeping a lot. I thought about leaving all the typos in this post in order to demonstrate just how out of it I am, but couldn't bring myself to do it. For demonstration purposes, though, here are some instant messages I sent to Raider on the other day, asking him to come home from work if he could, to take the Tiny Tornado to gymnastics. He asked if he should bring me food, and I said I might be able to eat some yoghurt. These were typed on the same keyboard I'm using now.
Su Penn:
I think I need you to com ehome. I’m in so much pain
that was a type]
he likes to lavea a little bofere 1
i expect so if hes not yeaer
that’s efficient for diringld
yougurt paybe
i’m probably going to sleep after I hear back from the coctor’s fofice
The new preventive has side effects. Everything does. Here's footnote 2: "Still, on the medication regimen my neurologist and I trial-and-errored our way to, my baseline is generally a comfortable Level 1." And all I had to give up for this wonderfully dramatic reduction in pain was orgasms. It's mostly been worth it, and I will someday write a whole other post about having a great sex life without orgasming. But that's what it's cost me. I met the devil at the crossroads, and that's the price he demanded.
When you have chronic pain, there is no option that doesn't cost. Want to feel better? That might mean giving up big chunks of your life. I have a friend who, for years, couldn't do evening activities because if she wasn't in bed by 7 p.m. she paid for it in pain. You will never get to have everything that people who don't live with pain have. I can have a really low pain baseline, or orgasms. I can't have both.
There are always these trade-offs. You live in the land of Either-Or, not the land of Both-And.
This latest flare-up is hard for me because it is different. I like it when I understand my pain and its patterns. A major flareup that lasts the better part of four weeks is unprecedented, and it scares me. I don't want to have to get used to a new normal that is worse than my old normal. Especially since I feel like I'm handling the old normal less well than I used to. When I was in my 20s and 30s, I had an underlying reserve of youthful energy that kept me going even when the pain was pretty bad. I'm almost 50; I don't have it anymore. This also scares me.
Third and final footnote: "And if I'm at baseline, and functioning pretty well, 'I'm doing great!' is true."
One of the things I've learned from Facebook is that many people have chronic pain or chronic illness that they live with. The body goes wrong in every possible way it can, so the conditions people live with are marvelously varied. And most of these people say, "I'm doing fine!" when you ask how they are. You might never know what they're carrying. My final footnote is to say that one reason I don't tell people every day that I have a headache is that I'm not unique. My burdens aren't especially heavy.
Today, I'm in a lot of pain, and at the same time I'm doped to the gills on a medication that is messing with me pretty badly. I think I've been wearing my nightgown for three days. I certainly smell like I have. I'm hoping that today I'll feel like I can stand up long enough to shower. If not today, tomorrow. I'm worried about the future, and I'm worried about the present, about all the things I haven't been keeping up on and the consequences of what I've missed in the bill box. But my to-do list is not overwhelming; most things can wait. I have been enjoying watching TV with the kids, and lying in my bed thinking drifty thoughts before I fall asleep. Food tastes good to me. I haven't lost my sense of humor. Earlier today, after I reviewed the day's essential chores with the kids, they did them. It's enough to go on with.
