There have been a lot of ups and downs in the last few weeks.
Shortly before New Year’s, I ran out of my antipsychotic, Seroquel, due to problems having it refilled. My wife had gone to the pharmacy for me since she was in the neighborhood. The pharmacy said the psychiatrist never sent the prescription over, my psychiatrist’s assistant (whom I finally got a hold of) said she had, and my psychiatrist—whom I talk to on the phone for a few minutes once a quarter—was out of office. There hasn’t been anyone else on my care team in quite some time. In the end, I missed two of my typical daily bedtime dose (went three days between taking it).
Without the Seroquel, I didn’t sleep worth mentioning, and was basically awake for sixty hours straight. During that time, I felt great. I went about all of my waking routines as usual, perhaps with extra vigor, catching up on my monthly writing goal, and going to a previously scheduled experience gift of a guided painting night from my mom, with her and my wife. Despite increasing psychosis symptoms (and the complete lack of sleep), I began to feel that maybe there was no point in going back on the meds at all. In reality, I probably had something like a brief, withdrawal induced (hypo)manic episode of some kind.
In the end, my psychiatrist’s assistant got a hold of my psychiatrist, who sent the prescription over again. Now that I was definitely in no state to drive, my wife went back to the pharmacy. They still said they didn’t have it. She called me to troubleshoot some more. In the end, it turned out she didn’t give the pharmacy my maiden name (and my psychiatrist/pharmacy seems to switch between my maiden and married names at random). I always give both names, and thought she’d observed this and would do the same (or at least the pharmacy might prompt her). In any case, problem solved. I went back on Seroquel and tried to bank extra sleep.
Yet, after that, my mood, focus, symptoms, and energy plummeted. I became more anxious and moody, feeling self destructive. The increased psychosis symptoms continued; there’s Farrah, the recurring dog, teleporting around, and a song I was listening to, my father’s corpse, gibberish voices, more.
I suddenly spent hours of my free time curled up on my office floor crying for no apparent reason.
I relapsed and cut myself for the first time in over a year and a half, after a lot of resisting the urge.
I couldn’t (can’t) write for long, no matter how clear the words are in my head. After finishing up my December goal on New Year’s Eve, despite a lot of time sitting and staring at my notebook, I haven’t posted anything since, my January goal deadline looming.
I took two days off from my usual routines (though I taught a class in that time), the first time in over a month I did so without solid reason (holiday, travel, someone else’s cancellation).
During the time I was off meds, I rapidly lost weight (not a lot, given that it was three days, but noticeable to someone who habitually hops on the scale several times a day, even after moving it to a bathroom I don’t go in much). I’m currently theorizing that the main reason my BMI is still low-normal and not underweight is because of the Seroquel, normally famous for making you gain weight—though I’ve lost some weight while on it, and am below my ideal weight, I am not losing at the rate I would normally. And that gave my eating disorder symptoms—primarily calorie restriction and overexercising—new life. About a month ago, I’d thrown out a crucial part of the enema kit I was abusing, sometimes multiple times a day, to “purge” in an attempt to quit; in stomach pain (unrelated), I acquired a new one, used it the once somewhat legitimately, but also very aware of my inability to quit with the kit around. After one more semi legitimate use, I gave the crucial piece to my wife and asked her to hide it, but later found it while she was out (Monday), and used it again.
(I was supposed to be running a routine TNG meetup event that night, but for the first time since I started the group—about a year and a half ago—I decided, day of, that I was not up to going, and she was my backup host.)
I also did a lot of eating disorder related research (and general media consumption). I read Almost Anorexic and Elena Vanishing.
I’ve still hosted the other TNG meetup event, and taught both virtual classes as scheduled so far this month.
I took another night (Thursday) off from my usual routines.
Yesterday, delusions joined the hallucination upswing. Why the fireplace would try to poison my dinner after failing to explode, even though I saw the smoke of it, I don’t know. Based on a dream I’d had, voices taunted that I was responsible for the long ago suicide of a then long ago former friend-quaintance. In a confused state as my wife tried to convince me to sleep it off, to try functionality again in the morning, I told her she was very pretty, and asked her whom she was, and where she had come from, picturing something like Farrah’s Void.
“Uh… Queens?” she said.
“You’ve met the queen?” I asked, enthused, completely misunderstanding, yet also apparently with it enough to think that if you’d met the Queen, you were someone important, even though I didn’t know whom my own wife was, and if you’d asked me the Queen of what, I probably couldn’t have told you.
Later, she told me, “You should go to sleep,” and I asked her if it was nice there, and if it was in Queens, and for directions. (I had no memory of this in the morning—I abruptly remembered it several days later while out on a walk, and started laughing, much to the confusion of onlookers.)
But today—another morning off—I feel at a bit of a loss as to why this is (still) happening, or what to do next.
It’s January 22nd now. I took last night and this morning off from most of my daily routines again. To be fair, both were spent on nice, special occasion family things, and I caught up and got back on track before dinner and my evening routines today.
January 23rd. The gibberish voices returned last night. I’ve been on track, though, and I’m experimenting with ways to rest more, stress less.
I still can’t seem to write more than a few sentences at a time, even though I have a lot that seems ready to go in my head.
It’s not even that I’m just unfocused. I’m not starting to write and then going to scroll the web intermittently instead. I open my notebook, or I open the document, and then I blink, look at the clock, and maybe half an hour’s gone by, there’s nothing on the page, nothing in my browsing history, and I have no idea what just happened. I seem to just be sitting and staring.
This morning, I thought I’d try time tracking to figure out where in the world that time went. Every now and then, every few months or so, I track my actual time in detail for about a week, to make sure it’s going where I want it. Normally, it is.
Today, at 11:05, I took a break. I had a snack and I went on the swingset in the backyard. At about 11:35, I wrote that I was about to start writing. I felt inspired. Then I blinked, looked at the clock, and it was 12:15. Nothing in the document. Nothing in my browsing history. No clue.
Shortly after writing the above, I mentioned the time tracking gap to my wife, who suggested I work at the extra desk in her office so she could see what happened/nudge me before I “blinked” and it was forty minutes later.
I sat down and opened up my notebook, and then apparently stared into the void. I remember more of a perception of time passing, but not much else. She nudged me at some point, but not much happened—minimal movements/speaking/response, almost catatonic. Eventually she got me to the bedroom for a nap, a little after 1:30, and I proceeded to sleep until almost 4, having strange, half awake feeling dreams and waking groggy, but feeling my recent normal between the missing times.
I have no idea why I’m so tired. I’ve tried shifting my wakeup time twenty minutes later; I’ve done a lot of sleeping in lately; I’ve slept well and plenty overall. But I did feel like I was about to pass out, stumbling my way down the landing to my wife’s office earlier.
January 29th. I took the rest of the 23rd, and the 24th, off, then got back on track. Writing is going better—slow but steady, though I still haven’t posted anything—and I feel better overall. My energy’s up. Still feeling kind of overwhelmed as certain deadlines loom. Eating Disorder Mode has largely continued, unfortunately, with near daily enema purging, and falling into chewspitting again for the first time in two months or so.
But I taught a class yesterday, with lots of people and lots of participation, and got other social time in, and that always perks me up.
I’m tweaking my schedule for sustainability. I’ve shifted my wakeup and lights out time slightly later to better match my natural rhythms. Closed an unproductive gap and removed an admittedly unproductive item from my routines, but created a gap at night, after my wife goes to bed and my electronics get turned off, to get some alone time, offline, to decompress before Seroquel and lights out, maybe do some writing (and she gets her own gap before I wake up). Finally admitted that consistent grocery shopping—having to feel up to driving, physically shopping, the sensory experience of the store, so on—is still often a Lot for me, and handed the general shopping to my wife at her nudging (actually, a lot of this was her idea), though I’ll still make the list and handle all the rest.
I’m hoping I’m still just a bit off kilter from the med mix up, and those changes will help both short and long term. If not, I still have my psychiatrist appointment in less than two weeks to discuss more.
I’ve gone back and forth on whether this is a blog post, a failed start at an incondite blog post, or a little log I’m keeping for myself (outside of my usual journaling). As I read it over, it sounds like a pretty basic life update for a mental health blog, and while that’s not necessarily bad, it’s not quite my usual style, either.
I’ve talked to a few different people recently about balancing different parts of my public image. Like almost anyone, I’m more inclined to show off my wins online than discuss the hard, or even, for me, mundane, parts of life. As someone whom people tell me they think of as an educator, a leader, a role model, it’s especially tempting to brush over things like mental health symptoms when in front of a larger audience. And I don’t like to worry anyone.
But… I also write and teach on mental health, so at some point, it’s weird if I’ve never actually discussed or displayed symptoms in public as they happen, as part of life, in a sometimes unpretty way—only smoothed over, as part of topic centered pieces, after the fact.
And I think it’s important for people to have a real reference for day to day, honest, non sensationalized mental illness, from inside of it, especially for the conditions shrouded in stigma.
So, here it is. A few notable, but not entirely unusual, weeks in my life.
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