a window opens
how a covid infection ushered in a solid nine weeks of relief from psych med withdrawal symptoms #withdrawalwarrior
So get this: I woke up about an hour after dawn this morning and got out of bed.
That’s it. That’s the story 🙃
…Well, it’s not the whole story, of course. But my point is:
I woke up, and there was no fogginess as I tried to figure out where I was. No internal tremors. No heart palpitations. No widespread body pain. No stiffness a deep, delicious stretch couldn’t relieve. No groaning or swearing or hobbling around looking for my compression socks. It was like I had forgotten that in psych med withdrawal, I’m supposed to spend the first few moments after returning to consciousness each morning in a state of vague dread as I work up the courage for the first torturous body scan of the day: okay, what are we dealing with today? How bad is getting out of bed gonna be? And do I really need to pee that badly?
But this morning, I got out of bed without any of that. I fixed my breakfast and took my meds and supplements as per usual, and I barely even feel like puking right now. I didn’t even know what to do with myself on a morning where I wasn’t feeling disgusting and nauseous. So I sat down and finally finished this post.
Like, holy shit, y’all!? 🤯
I don’t want to jinx it by saying much more. I know not to celebrate too much, not to get too attached to how this day is going for me so far.
But after what was a super rough and wavy weekend––after two months of increased symptom intensity and cycling through episode after episode of PEM––I’ll take even a short, dirty window. I’ll take all the light I can get.
If you’re not familiar with psychiatric drug withdrawal terminology, here’s a link that explains the “windows and waves” pattern many of us experience as we heal.
Also, here’s a link to some info about PEM (post-exertional malaise) in ME/CFS, which is also not an uncommon presentation of psych med withdrawal symptoms. And it’s all pretty much about nervous system dysregulation anyway, so it kinda makes sense…
It’s been just over a month since I published my last post. Focused writing sessions have gotten insanely hard, ever since a giant wave knocked me flat at the end of March, although I have of course continued to be active in the Notes section here. (That’s how y’all can tell I’m still alive, btw 🙃)
But before that––from late January into February and most of March––I experienced my first solid window since the worst of my psych med injuries two summers ago (rapid taper from 150 to 37.5 mg of Effexor over the course of a few weeks, which my psych NP said would be “fine,” UGHHH).
And how this window opened was pretty wild.
Story Time
Rewind to the middle of January of this year, when my reward for attempting a sizable social gathering, my first after six months of isolation, was getting COVID.
This was actually the first time I had gotten COVID, to my knowledge. No, I have no idea how I managed to avoid it for almost six years, throughout which I had certainly been exposed plenty of times. And yes, I kept up with the vaccines until 2024, for whatever that’s worth. Granted, I have been pretty sick with over 50 withdrawal symptoms for much of that time, detailed in a post I wrote last fall: “51 symptoms (but this is not a pity party).” But I think I’ve only had two upper respiratory infections since then. So despite the way every other system in my body has gone totally haywire in withdrawal, apparently my immune system is doing reasonably okay…? Weird.
Anyway, I had referenced this social gathering briefly and reported on how it went in this restack of my most-viewed post to date (called “maybe this is healing”):
…I tried to have fun at the “super-spreader” event I attended—but mostly it was just difficult with my hyper-sensitive sensory issues these days, and I didn’t really make any new connections. I ended up ducking out as quickly as I could afterwards, broke into tears as soon as I got outside, and sobbed the whole drive home––overstimulated, dysregulated, defeated, still grieving my old life.
Three days after that event, I started feeling something like a cold coming on.
I was totally kicking myself. Like, how stupid was I to be sharing air like that with around 20 people at an indoor event in midwinter, as the mask I had brought with me was stupidly tucked away in my bag? (Although hear me out––since I’ve been in withdrawal, I really can’t stand the sensation of anything on my face anymore, particularly when I’m trying to talk or sing. Also, only two or three other people there were wearing masks… So it was too easy to say fuck it, it will be fine.)
Heh. It was not fine…
As the day wore on and I realized I was feeling worse and worse, I attempted to plan ahead. There was a huge snowstorm in the forecast, and at that point, I was still a total recluse––rarely leaving the house, and no one I could call if I needed help with anything. The neighbors didn’t even know I existed. (Well okay, there was one neighbor nearby… But she had some serious issues of her own, and things between us had deteriorated to the point where I ended up having to ask her several times to just stay the fuck away from me. I need to write about that whole shit show at some point.) But that day, I managed to cook most of the food I had in the fridge, do a load of laundry, stock up on cat litter, and take a drive out to the natural spring to fill up a week’s worth of water jugs.
And I ended up being very glad I did those things, because when the COVID symptoms hit the following day, I went down fast. My head felt like it was splitting open, the coughing spells combined with the air hunger from withdrawal left me gasping for oxygen, and my temperature climbed to almost 102 degrees. My normal body temperature is on the lower side (usually around 96.5 degrees), and so a 102-degree fever for me feels like I’m absolutely fucking dying.
Rummaging through a box I hadn’t unpacked yet from the move, I found a home test kit for COVID and influenza A/B… and “C” was for COVID ☹️
I hadn’t had COVID before, so I really didn’t know what to expect. But over the next two days, I discovered that COVID + psych med withdrawal symptoms = a very special kind of hell that you really can’t imagine unless you’ve experienced it. And I suppose it makes sense––I mean, we all know that COVID has been around the block a few times, and it really knows how to fuck with the human nervous system. With my injured, sensitized CNS, I was in for a rough time.
And okay––so I tend to complain a lot about the all-over body pain, which has probably been the most intense and debilitating of all my withdrawal symptoms. But y’all need to believe me when I say that this kind of pain was something else entirely.
Lying down hurt. Sitting up hurt. I couldn’t stand for too long, but that hurt even more. Stretching and moving hurt, but so did not stretching and not moving. No matter what I did, my body was wracked with these intense, stabbing-burning-prickling sensations that were radiating from a source I couldn’t exactly pinpoint––was it my bones and joints? Or deep within the muscle tissues? Sometimes it felt like the pain was just underneath my skin, this awful ache from anything that was touching me: the weight of the blankets on my legs, the pressure of my back on the mattress, the light squeeze of the socks on my feet. And weirdly, the pain wasn’t limited to the areas of contact––it was everywhere. Migrating, undulating.
It was near-torture, and in case you’re wondering, Tylenol or ibuprofen just don’t touch this kind of pain. I found that out the hard way two summers ago, and anyway, I am trying not to take most OTCs anymore. The online withdrawal community has taught me that pretty much anything I put in my body at this point has the potential of further destabilizing my nervous system, and it’s best to be extremely careful. (Although I did end up taking a low dose of Tylenol a few times over the first 48 hours, when the fever became unbearable.)
At the peak of the illness, I was drifting fitfully in and out of sleep as searing waves of pain jolted through me––the best description I can come up with is it felt like being burned alive, while at the same time being stabbed with thousands of tiny icepicks all over. My whole body was just shrieking in pain. I could barely move. I remember I had a Maren Morris song in my earbuds on repeat, which brought some comfort, as did period check-ins from a few of my healing buddies. I did my best to stay hydrated. Somehow, I didn’t panic.
But here’s the thing: as horrific as all that was, I actually recovered from COVID pretty quickly. Two terrible nights, one rotten one, and then within about a week, all that was left was a little congestion in my chest and sinuses.
And then I felt… better.
Like, I felt really better. And this is where it gets weird…
Because my withdrawal symptoms had not just gone back my previous baseline of discomfort and pain: they too were subsiding, little by little, day by day. And soon enough, I noticed they had pretty much disappeared.
Ikr?!? 🤯🤯🤯
The body pain: gone. Internal tremors: gone. No more twitching limbs, no more nonstop movement and squirreliness. The hypervigilance that kept me mostly home-bound drastically decreased. The nausea after eating or drinking stopped altogether, as did the tachycardia, heart palpitations, hours of weird flushing above the neck, and all the other withdrawal symptoms associated with dysautonomia. I was sleeping as much as six or seven hours a night, most nights.
All that remained of my previous baseline was a bit of the annoying tingling/numbness in my feet, along with some intermittent fatigue, brain fog, and air hunger… and even those started slowly decreasing over the weeks that followed. My sleep continued to improve. I even gained back about five pounds of the weight I had recently lost (not sure how I feel about that yet, but I do think it’s another sign that my body is healing).
But like, what the actual fuck was all this even about? Did COVID somehow reboot my central nervous system, or something like that? I keep saying they should do a study on me 🙃
But whatever it was, it felt like a fucking miracle. I was nearly symptom-free, for the first time in the 19 months that had passed since that Effexor rapid taper injury. And it lasted for NINE WHOLE WEEKS. My first solid window.
And it was during those nine weeks when things really started happening for me:
I stood up for myself when I realized the extent of the dishonest, avoidant douchebaggery my person had tried to pull on me. (I shared some deets about that whole shit show in “things a man oughta know” and “white liar”). It wasn’t the kind of closure I would have preferred––the kind that would have honored the depth of our connection, so I could actually heal from how much it all still hurts––and I’m not totally proud of how I handled it. But at the same time, I actually am proud that I sent a clear message about the kind of treatment I would no longer tolerate. And in doing so, I put a stop to what would have been yet another cycle of endless forgiving, unreciprocated apologizing, and constantly minimizing my own needs.
I cut contact with nearly everyone in my old life, including my family—which had to happen, so I could stop looking back, let go, and move on. This continues to be a source of pain and grief that I struggle with at times. I think it will get easier, eventually.
I took risks and started engaging with people in my new community around things that are important to me: music, art, and sustainability.
I started letting new people in––albeit slowly and cautiously. I’m learning as I go about the extent to which I can show up in the world as the authentic self I never could be before. And I’m not hiding what has happened to me, the painful road that led me out here—but I’m getting better at speaking from the scar, and not screaming from the wound. I think I’ve landed in a place where the right people will lean in. And stay.
I was able to mostly keep it together when I had to put my cat down in March (see “bring on the rain”), as well as when the universe tossed me some unexpected curveballs with my living situation. It’s been stressful, but I figured it out, and I’m supposed to sign a lease on a new place later today.
I made some really significant progress in my emotional healing. With the help of my therapist and especially the somatic experiencing/touch therapy I started last fall, I’m trying to understand how to feel my emotions without fear. I’m still grieving the past, all I’ve lost to psych med withdrawal, the things that were taken from me unknowingly, when I was put on Prozac as a teenager.
I unearthed some serious, radical self-love and compassion for the person I am becoming—even if I still feel like I’m probably somewhat hard for others to love sometimes. But I know I won’t be ready to ask or expect that of anyone (besides me) for a while, anyway. And I’m okay with that.
I broke up with coffee. I know, I know… 😧 Do I miss it? Sure I do. But I don’t miss the impact of all the caffeine and acidity on my gut in withdrawal, and I’m never looking back.
But most significantly, I was just days away from starting a very slow taper off of the stimulant med I tried tapering a year ago, at which time I fucked my math, accidentally up-dosed myself, and ended up pretty severely destabilized. And since that time, as I was waiting to stabilize, I wasn’t confident I would know when I was ready to try again… but I did know.
Unfortunately, the window came to an end, with very little warning, during the week leading up to Easter. (I posted a poem about that wave in early April: “passiontide”.) Since then, I have had to cut back on things I was hoping to do—and I had to delay my taper yet again, which was a big bummer. But that’s just how this whole thing works.
There have been some pretty damn rough patches over the last two months. But it’s okay… Even on the toughest days, I know I’m okay.
Because that taste of freedom from the symptoms? It was everything.
That window was the pinprick of light at the end of this long, long tunnel of suffering that I needed. It gave me hope, and it served as undeniable proof that I am healing from the psych med injuries I suffered over the last few years, after trusting my doctors’ ignorance about how to come off of four classes of psychiatric drugs I wish I had never started on.
And that window was all the proof I needed to know that this journey to becoming the person I was supposed to be will not always be as painful and difficult as it has been.
I know there will be more windows. As hard as it is, I just have to keep being patient…
And, of course, stay alive.
Which is starting to look like it might not be such a hard thing to do anymore.
Cross your fingers and toes for me, y’all 💜💪
I've learned so much about psych med withdrawal from you and had never heard about the windows and waves thing. COVID sounds like an absolute nightmare, but yay I guess because you got a long window?
God, I really, really wonder what my life would have been like if I'd known to taper. I'm glad to year you're still going -- it's got to be tough to keep on when the window closes.
Thanks for sharing all that. You've been through so much. I can't even imagine. I'm so glad things seem to be getting better.