When I saw my neurologist a couple of weeks ago, I was rather surprised that she had essentially zero interest in hearing what had gone on in the five months since I'd seen her last (though it could be summed up by the words, "no change"); all she was concerned about was the two weeks that had transpired since I'd hit my head. Nearly five weeks post-concussion, though, I better understand her focus. She's right: everything has changed.
The last two years of my life now comprises three eras: my life before the chronic migraines started (we shall refer to is was the B.M. era), the twenty-one months of daily migraines prior to the head injury (D.M.), and then these five weeks after the concussion (P.C.).
I'd found that things that I could accomplish in hours B.M. took days in the D.M. era, things that took days B.M. took weeks D.M., and things that took weeks B.M. took months D.M. If I thought everything took longer with migraines, it doesn't even compare to how much exponentially longer things take now. I've spent a week, for example, trying to write this post, but generally have to lie down after writing a few sentences and am too exhausted to write at all on most days. My previous entry, although mostly photos, nevertheless took several days to put together.
It's the fatigue that has surprised me the most. I've experienced the worst light sensitivity and the worst nausea in my nine years as a migraineur during these last few weeks, but those things, fortunately, have gradually abated. I've found, though, that getting worn out makes me extraordinarily vulnerable to seeing these symptoms reoccur. The stress and stimuli involved in seeing my neurologist, for example, left me too nauseated to even drink water and so light sensitive that the little bit of light filtering through my eyelids as I lay in a room with the lights off, doors closed, and the blinds shut was intolerable. It was more than a week before I even began to recover and I was nearly sent back to square one when I started having trouble sleeping because I was overheating in the night.
But beyond coping with stressors, the day-to-day exhaustion is considerable. During the D.M. phase, I might spend 18 hours in bed on a really bad day, but 12-14 was the more common range. P.C., on a GOOD day I'm only in bed for 18 hours. On a bad day (and there have been a lot of them), I may spend 21 to 22 hours in bed. I generally haven't been sleeping more than twelve hours, but I haven't wanted to be up during the other twelve hours when I'm awake. Trying to produce anything (like writing) has been nearly impossible, and I've gone as far as temporarily shuttering my Etsy store. I could have left it up and just ignored it, but the idea that someone might BUY something was exhausting. Watching a bit of TV on the internet has been a stretch most days (I've confined myself by and large to nature documentaries) and I haven't had the slightest interest in attempting something as long as a movie. I'm not always up for reading, but if I finally have reached my limit for lying in the dark while my mind wanders (I've done a considerable amount of "writing" in my head over these last few weeks), it's generally preferable to the light, movement, and sound to be found on the screen or, for that matter, in the real world. We've finally had a bit of nicer weather in this part of the country, but I'm better off when the sun isn't shining. There are just too many leaves out there, too much light and shadow. I've only left the house once for a reason other than a medical appointment and it was a mistake. I thought riding along on a twilight errand might be a welcome change of pace, but it was far too much light and movement.
Another P.C. change is that the one acute migraine drug that I'd found helpful D.M. no longer works. Time will tell, but my neurologist is not optimistic. The blow to the head may have caused a long term change to how my migraines work. Right now, my greatest relief comes from an anti-inflammatory from the ibuprofen family (which, fortunately, has not interacted negatively with my lithium as often as I feared it would, though it just so happens that today is one of the days when it has caused my lithium level to spike, which means I can't take more until my lithium level comes back down) and Vitamin B12 injections. My naturopath taught my parents how to give me them at home, so I've been able to have one twice a week. The most effective treatment, though, is lying in bed in the dark doing nothing. Having worn myself out completely in my effort to get all this down into writing, that is what is on my agenda for the rest of the day.
It's a strange life, and made stranger still because it resembles, in many ways, the months of migraines that preceded it. But this is undoubtably a new era, and a harder one. I hope that it won't be too many more months before it starts to get easier.