I just hit the 20 week mark of this pregnancy. Officially half over. The first 20 weeks were the longest and hardest of my life, due to hyperemesis gravidarum. When I think about the things that helped me through the darkest times, I think about endless internet searches for forum posts and blog entries. Desperately grasping for some reassurance that I’m not alone. That other women have been through this, and that they survived.
An astonishingly small number of those women talk about the really dark parts. You see it hinted at, here and there. Just last week I stumbled on one that was a real stream of consciousness account of the worst times. I think it might come from the fact that when we’re in those dark times, we don’t often have the energy or capability to write down what we’re feeling. It’s too much work, just trying to lie completely immobile in a dark and hopefully scent-free room, fighting with every ounce of your will to not throw up for the twentieth time today. And then when you get past it, when you’re starting to feel like a person again, you don’t WANT to dwell on those bad times. You don’t want to remember how flimsy your resolve was, how much this illness stripped away every recognizable part of you and showed you what you really are, underneath it all.
Not being able to find enough of those accounts is why I wrote this blog entry. In some ways I want to be able to remember how low HG brought me. I want to look at how broken and defeated I was. I want to mourn the loss of the person I was before HG swept into (and took over) my life. And I want to be able to compare that to the person I am now. Slowly picking up the sad, small pieces that are left. Trying to build them up into a stronger person.
Today, though, I want to address another part of HG that I had trouble finding accounts of: Recovery.
The tricky part with this is that some women don’t experience any lessening of HG until after they give birth (and sometimes not even then, because the nausea will linger). And for many HG women, it seems to be the norm for the symptoms to shut off like a light switch. All of a sudden the nausea is gone, the appetite is back, and the only lingering effects are atrophied muscles and teeth corroded from all the stomach acid. Not to mention the more subtle psychological impacts that give many HG women PTSD. So, a gradual recovery isn’t very common, and once these women have their baby in their arms I think many of them want to just put HG behind them, rather than record how they come back from it while dealing with a newborn. Not to mention that a mother with a newborn is a very busy woman, and might not have the time or energy to keep talking about HG and its longterm effects.
But here I am, at week 20 of the pregnancy. It looks like I might be one of the lucky women who experience some relief from the HG during the second trimester *knocks on wood*. It might only be due to the steroids, it might be linked to the placenta taking on more of the task of regulating hormones for the baby, it might be due to the lessening of the huge amounts of hcg coursing through my symptom. We really have no idea, because no one has yet found the cause of HG.
I haven’t vomited in a month. It has been a full month since I have had to be in the hospital. I took a shower yesterday. Life is considerably better now than it was in the dark times.
So here is what a day looks like for me, trying to recover from HG.
Wake up around 8:30, praising the Unisom I took last night because it let me sleep for a full ten hours, only waking up a couple times because of vivid nightmares (this time including velociraptors, which is what I get when I read Michael Crichton before bed).
Open the bedroom window a bit to catch some of the sound of the light rain, so rare in our California desert areas. Pull the covers up some more, because the air outside is finally, officially cold.
The cat notices I’m awake, and decides it would be excellent if I got up right away and fed him a can of wet food. I spend the next half hour pushing him off the bed, trying to protect my stomach so that he doesn’t step all over the baby as he tries to bug me into getting up. I browse Facebook, check up on what my pregnancy app says is going on with the baby during week 20.
Eventually my bladder is just too full to let me stay in bed longer. I pull bottle after bottle out of my nightstand drawer, which won’t even close anymore because it’s overflowing with about twenty different medications. I dutifully take my steroid dose, trying not to worry that tomorrow is the last day of the steroids, and we don’t know whether I’ll be doing well when I have to cut them out completely. I take my Pepcid, thankful that switching from the Prilosec worked, because I was worried about what it was training my body to do, being on such a strong acid blocker for so long. I hesitate for the merest second before also taking my Benedryl, reasoning that even if I’m not super nauseous right now, it’s better to be safe than sorry. Already having Benedryl in your system is much better than getting super nauseous and then having to swallow one.
I remember the conversation I had with friends yesterday, that before I got pregnant I thought I would eat entirely paleo and never take any medications or even have caffeine while I was pregnant. I’ve done great on the caffeine side of things, but I’m lucky if I eat anything at all, so it doesn’t make sense to restrict my diet. And the “no-medications” I had to give up on in week six of the pregnancy, or risk both myself and the baby dying. So it goes.
I intend to brush my teeth right after emptying my bladder, but find myself already back in the bedroom. Women talk about “pregnancy brain,” the sort of absent-mindedness that causes them to forget what they were doing or where they were going. I think it’s training, for when the baby comes. Like your brain wants to show you that you really aren’t capable of multitasking, when you have fifty million things running through your brain at any given time. You think of everything, but have follow-through on nothing. I sit on the bed again, wondering if I really have it in me to go back to the bathroom and brush my teeth. I think about the awful taste in my mouth, and trying to eat food with it present. I decide to brush my teeth.
The minty toothpaste helps for a minute or two with that nasty taste that lives in the back of my throat. I described it to my friends like this: picture a hearty kale smoothie. That you leave out on the counter for a few days, until it’s growing a nice patch of mold. Imagine that you drank just the chunky bits, and they coated the back of your throat. That’s the kind of taste I live with every day.
I’m not hungry, in fact the idea of food makes me feel like crawling under the covers and trying to sleep until doomsday instead. I force myself to walk to the kitchen. I microwave some frozen, fully-cooked sausage links. Gone are the days of cooking fresh food for myself. I fill a small disposable bowl with Cheerios and milk (the less dishes that need to be cleaned, the less my husband has to do when he comes home for the weekend). The milk coats the taste at the back of my throat, making it even worse for a while, but I think about the calcium that my baby probably needs right now, and I force myself to finish it all. I chase everything with a banana, which helps with the taste for a little while.
Five weeks ago, I was in the hospital with a feeding tube, IV nutrition, and IV meds every six hours around the clock. I owe my ability to eat entirely to the steroids, which after four days of IV dosing finally started kicking in to stop the vomiting. The 40 mg of prednisone I took the week after the hospital gave me a voracious appetite, trying constantly to soothe that empty feeling I had in my stomach all the time. Now, on 10 mg, I’m lucky to force things down and not have them come back up. I don’t eat enough most days, because when you have no appetite and no energy even getting up to get yourself a snack is a monumental task. But I’m eating every day, and my body must be absorbing some of the nutrients for the baby. I don’t feel stronger at all, but the baby still feels alive and well.
I seriously consider spending the entire day catching up on Once Upon a Time episodes. I know that when I push myself too hard, I don’t just sleep more and have achy muscles. The HG symptoms get worse, threatening a relapse. Last week I drove myself to my doctor appointment, for the first time in three months. I even went to Target afterward to get myself some milk and shampoo. I paid for that the rest of the week with increased nausea, less stamina, and poor sleep. I get a little better on the weekends, when my husband is here getting me food and water. I don’t have to get up as much, then, and I end up eating and sleeping more.
I decide that today should be a productive day, as much as I can make it one. I feel guilty, doing anything “productive” that doesn’t involve working from home. I feel like they might have forgotten about me for the most part. They must all be used to me not being around, by now. I know I’m lucky to have a job who won’t fire me for being so sick. I’m lucky to have a doctor who will sign off on my short-term disability, so that I won’t lose my job. I worry, though, about when my doctor says I’m “well” enough to start working again. I think about how much it taxes my strength for the rest of the week when I take myself to a doctor appointment. I think about the half-hour drive to go to work, and the rewarding but relentless minor stress of “getting things done” while I’m there. Even working from home, I know that added responsibilities at this point will stretch my limits. It could all bring about a relapse, and then I’m back to bed all day every day.
Every tiny bit of “progress” is like that, for someone who isn’t sure whether the HG is going to come back with a vengeance. Third trimester relapses are unsettlingly common, unfortunately. I could manage to go back to work week 21, build up to actually going into the office and working a full 40-hour week. Only for it all to come to a grinding halt around the mid-30s weeks, as I descend back into something as bad as the dark times at weeks 8-11.
Or I could try to work from home next week, just a few hours a day, and then have an even sooner relapse because my body is just waiting for an excuse to succumb to the lingering HG. It feels like being stalked by a deadly predator every moment of every day. You hope that you’re hiding well enough, you hope that you can stay ahead of it. But it’s smarter than you, and stronger than you, and ultimately you won’t even see it coming.
I will likely spend the rest of the day trying to write blog posts, book reviews, and working on my novel. The going will be slow, and I will have to force myself to get up every couple hours to grab another snack. Once I’ve started eating for the day, it’s better to keep something in my stomach at all times to fend off the stronger nausea that accompanies an empty stomach. I will be looking forward to five hours from now, when I can take another Benadryl. They’re supposed to work on the nausea in a consistent sort of way, and maybe they do. But the real relief comes a half hour after taking it, when it’s hitting your system and for two or three blissful moments, you feel woozy and lightheaded but also amazingly free of nausea. It only lasts a few minutes, and then you’re back to a constant state of low-level nausea, but those minutes are damn worth it.
I won’t have the energy to do any cleaning today, though I could make a list a mile long of the things I’d like to be doing around the house. I won’t attempt a shower, because I just took one yesterday and I have to conserve my energy for when I really need it. Surprising, how much a single shower can take out of your energy reserves. I will likely say no, when my friends ask if I want them to keep me company later in the day, because I know that even as lovely as it is to have contact with real people, it also taxes my strength. I will try to get through the day without napping, because every time I let myself nap during the day it throws my whole sleeping schedule off, until I’m in a strange cycle of 5-6 hours awake, 5 hours asleep, 5-6 hours awake, 5 hours asleep, ad infinitum. Sadly, five hours of sleep doesn’t leave me feeling rested or rejuvenated, and it takes some careful Unisom dosing to get me back to sleeping through the night.
I will spend the day fighting myself, which is all I do lately. Mentally, I’m sound enough to know what needs to be done, what should be done, what I’d like to be doing… Physically, I have restrictions that don’t ever seem to want to let up. The constant state of frustration at not being capable of doing the things that I want to do wears me down. Give me three months off work and my normal strength and I could have had three novels completed by now. Instead, I’m lucky if I can write a little bit at a time, and not get nauseous looking at a computer screen. Gone are the hours of relentless pounding at the keyboard, writing or working and not noticing when the whole day has passed me by. Now I’m lucky to get through twenty minutes without having to pause everything, take a mental inventory of my symptoms, consider climbing back into bed to lose myself in fitful sleep.
Every day is colored by the fear that I will descend back into the dark times, without any warning. I may have reached the halfway point of this pregnancy, but that just means I know how damnably long twenty weeks can feel like. Twenty more weeks of this cautious testing of boundaries, the constant small relapses when I push myself too much without realizing it—it’s enough to drive anyone crazy. Doctors and family members and friends are always so overjoyed to hear that I’m not vomiting, that I’m eating a little and keeping it down. As if that means I’m finally better, and it’s all easy as pie from here. Except nothing is easy, when HG is stalking you. It knows where I live, it knows where I sleep, and there’s no level of cunning or strategy that can help me lose it entirely. It’s probably exactly what it feels like after the pregnancy, too. A constant knowledge of how low illness can really bring you. Anxiety or panic attacks every time you feel the least bit nauseous. A forever altered relationship with food, because you won’t ever be able to eat it without being aware in some small part of you that it could disagree with you. A fear that if you start vomiting, you’ll never be able to stop again.
Recovering from HG is as much a psychological battle as it is a physical one. I could be years out from needing another gym membership, because my body is so weak that I can’t even imagine being able to lift a 10 lb dumbbell. I don’t even know, at this point, how much I will hold myself back from even trying to push things, because of the fear of relapse. It isn’t one of those situations where you just throw up your hands and do it anyway, to see what happens. There’s enough fear in me to fill a fucking reservoir and keep a small city hydrated for ten years. And I’m not allowed to talk about the fear, with most people. They get slightly uncomfortable, talking about pregnancy in anything less than a happy, optimistic, joyful way. And eventually they all say something along the lines of, “at least the baby is healthy! Isn’t that great?” But I don’t define myself through my kid, the way some other parents do. It isn’t the be-all-end-all of my existence to have a child, and be a mom. I’m still my own person, and I still matter in plenty of ways that don’t factor a kid into the mix. Sure, I can be happy that we haven’t lost the baby. But I can also be damn sad about how sick I am, about how weak my body is, about how long it will take me to work back up to being a normal fucking human being, able to take care of myself and my house and my normal responsibilities.
You can tell there’s anger there, when I have enough energy to let it boil up to the surface a bit. Anger is my natural response to things—a defense mechanism so that I don’t have to feel defeated and weak. The truth, though, is that I am defeated. I am weak, and sad, and my life can now easily be broken into two halves. Everything before HG, vs. Everything after. I will never again be a person who has not known the terrible reality of such a debilitating illness. I will never again be able to look at myself and think that I’m strong enough to handle anything. I wasn’t strong enough for the HG. I couldn’t hold onto myself through it. I lost so much of who I was, and now I’m left to figure out who I could possibly be on the other side of it. All while worrying that it will emerge from the shadows to drag me down to the depths again.
I’m tired, and every day is difficult. I wish I could say I’m proud of myself for surviving, for still living. I’m still just doing what’s expected of me, though. Being a good little girl, forcing myself to eat and drink when I’d rather never risk that again. I’m tired, and I want to remember what it feels like to not have to TRY to stay alive.
For me, right now, this is what it’s like to try to “recover” from HG. This is the mental and physical battle that I fight every single day. There are plenty of women out there who know exactly what I mean, who have faced this day in and day out. My heart goes out to them, and I pray every day that someone somewhere will find the cause of this terrible illness, so that we can start working on a cure. Preferably before my kid has to go through it, since it might have a strong genetic link.
You can find the other posts in my series on hyperemesis gravidarum here.