An HG Dark Night of the Soul

This is going to be a tough post to write, which is why I’ve been putting it off for so long. I came up with the idea for it during week 16 of the pregnancy, and we’re now at week 21.

Week 16 was still rough. The steroids were keeping me from vomiting, but nausea, headaches, food aversions, and lack of appetite were all still appallingly present. Round ligament pain was a big new thing that week, and resulted in a lot of days of not wanting to get out of bed at all, because OW. I might have added acetaminophen to the six or seven medications I was taking at that point, if I hadn’t already read that it didn’t help the majority of the women talking about it on the forums online. When you have to be heavily medicated just to keep you and baby alive, you view it as a small victory if you can go without just one of those medications. That week, it was acetaminophen.

By the time my husband came home for the weekend, I was at my wit’s end. I wasn’t vomiting, but I wasn’t better. I probably wouldn’t be better until week twenty at the earliest, and even then I was rocking a 49% chance that I would be one of the women who stayed sick the entire pregnancy. I had no idea whether I would ever be able to go back to work, or whether I would get any sort of break. With all the vomiting and hospital visits and medication schedules, I hadn’t had a chance to feel an iota of joy about the pregnancy. In short, I was worn thin.

I could feel the baby’s movements as fluttering, sometimes. But it still wasn’t real. I was a full eight weeks out from the baby having even the remotest chance of being able to survive outside of my body. I have no idea when a “soul” enters the picture, but I certainly didn’t feel like the vessel for another one in addition to my own. And my soul was pretty worn down. Pretty damn defeated.

Whatever your political or moral feelings are on abortion or “therapeutic terminations,” I don’t really care. Unless you have had HG (and had it at the same level of severity as I have, because not everyone has it this bad), I’m going to politely decline to receive any judgment you might pass on. It’s one of those things that you don’t get to comment on if you haven’t experienced it, the same way we should leave men out of any political decisions regarding women’s sexual autonomy or health. What it boils down to is this: I have always been the type of person who said that no matter what, I would never choose to abort a child that I had conceived in love. HG tore that happy confidence away from me.

I love my husband. We have a solid relationship, mostly because we have worked so hard these past six years toward that end. We both wanted this child, we were both over the moon when we decided to start trying. Even though most of our friends won’t be starting this process for another five or more years, we knew it was the right time for us. By week 16, after ten full weeks of debilitating HG, I was contemplating the possibility of talking to my doctor about a termination.

It didn’t come down to health, for me, though for many women they are forced into a corner in that regard. No one understands HG, and treatment for it is not standardized. There’s no “cure.” No medications that have been tested and found safe for women with HG and their unborn babies. Even one case of a mother having to choose to terminate her pregnancy to save her own life due to negligence and ineffective health care treatment would be one too many. Sadly, there are far more than that. A truly depressing number. I am lucky that I had the opportunity to switch obstetricians so that I wouldn’t have to face that pressure. I certainly thought I was going to die, right along with my unborn baby, under the care of my first OB. But by week 16 I was being treated by a better one. I had access to steroids, which kept the vomiting at bay. I could ingest food and liquid again.

Still, even with those advances, I saw how precarious my position was. We would try to taper the steroid dose, and I would get much worse. Walking from the bedroom to the kitchen was too much work, and left me shaky and weak for hours. I was scared to take a shower, knowing as I did how much of my careful energy stores would be sapped. How much worse I would be the next day, because any “extra” stress would require days to recover from.

Then, consider the psychological ramifications. Take away the constant fear of the imminent possibility of death. Now you’re left with a body too weak to do anything, but a mind that is suddenly free to think and feel and understand the long-term ramifications of this illness. I missed work. I missed my friends. I missed being able to clean my own house, and kiss my husband without feeling like throwing up. I missed sex and the outdoors and grocery shopping and all of it. I missed being a functioning member of society. I missed making my customers happy, and feeling that inner glow when I knew my coworkers appreciated me because I was helpful and useful. I missed lazy Saturday mornings with my husband, when food wasn’t a volatile topic and I could help him cook and we could talk about the future.

My future looked completely different, in every possible way. There was no going back. I realized it, the Saturday of week 16 of the pregnancy. I could NEVER go back to my life before HG. It’s a powerful thing, and it split my life in a very powerful way. There was the person I was before I had HG, and there was the person I was after it. HG breaks you down so much. It shatters your soul and then steps on the shards, so that all you’re left with is dust and maybe, just maybe, two or three pieces of glitter. Facing that was terrifying, especially because there doesn’t seem to be any way to make anything from just dust. You need a frame, or glue, or a kiln, or something. I just had dust.

So, I had no idea who the “post-HG ME” was. Would she resemble the prior-HG me at all? Would she be bitter and jealous, robbed of so many months of her life, robbed of the “joys of pregnancy” that 99% of pregnant women were allowed to experience? Would she have a complete breakdown at the merest sign of nausea post-pregnancy, fearing that it was starting all over again? Would she be able to function at all? Even more important than that, would she resent her child, as the instrument that brought about this colossal change?

It seemed to me like I had two choices. I could terminate the pregnancy, effectively ending my HG then and there, and then try to work with the dust and see what I could make. OR, I could decide once and for all to see the entire pregnancy through, come what may, and see if there was even the tiniest speck of dust left at the end of it from which to begin again. Two terrifying options. One big judgmental society and a family who would disown me if I went with termination. No child to show for the weeks of HG, and the fear that given enough years I would “forget” enough to want to try again, and would undoubtedly get recurrent HG, causing all the same pain over again. Except dealing with HG a second time has got to be more nerve-wracking, because you can’t ever believe your idiot doctor when he says it’ll be better by week 12, because you know it won’t. And the big question: could I live with myself afterward, knowing that I had chosen to terminate a baby that we had planned for, a baby we wanted, a child conceived in love?

Equally scary, the other option involved another permanent change to my life. A real live child, who I would have to care for and change the entire structure of my life for. It had already completely taken over my body, so that it wasn’t my own anymore. That would keep happening, at least all the way through breastfeeding. And human children are so dependent. They can’t do anything themselves, for a VERY long time. Did I want to be saddled with that, COULD I be saddled with that, with my soul so completely broken and crushed by HG?

You see, at this point, I had a realistic view of my strength. We all like to think the best of ourselves. We all like to think that faced with adversity we would be kind and compassionate and brave and loving. Then I got HG, and realized just how weak I really am. How little, relatively speaking, it actually took to bring me to the point where I lay on the bathroom floor and wished for a spontaneous miscarriage. Where I questioned the sanity of my pre-HG self in wanting to be pregnant at all. Where I thought about getting rid of the child, and whether or not that would also doom my marriage because of how much my husband has always wanted a kid.

We spent that entire day crying and talking and talking and crying. I won’t say what my husband’s stance was in all this, because it’s his decision whether to share that with the world. He’s good at communicating with me, though, and loving and supporting me. Even though it was very much up to the both of us, there was still a tiny percentage of the choice that was entirely my own. My body, my choice. I had the majority vote, by the smallest margin.

I did a tarot reading, hoping to get some guidance. I was at my wit’s end, and I would make a final decision that day, so help me, because having to deal with the possibility that you can choose to make things better, that you can choose to make the HG go away at any time, it drives you insane. It’s already insane, being that sick and choosing to let it continue when a certain remedy is at hand. You just have to decide if the kid is worth it. And you have to decide that before you’ve had the chance to MEET the kid. Before you know anything about how they’ll turn out, who they’ll be.

The tarot cards were predictable. They indicated a pregnancy, and a time of choice. They indicated that there were two paths, and that either one of them had the potential to give me opportunities for immense growth. The Death card took prominence, signaling a Transformation. The only clear message: whatever you choose, you will be transformed. No actual hints as to which was the better choice, or which one would result in less heartache or pain or mental instability.

I could see how much I hated being dependent on other people for my survival. My husband was doing everything for me, taking over all the household responsibilities that were usually mine, in addition to everything else he normally managed for us. He was even filling out my disability paperwork, because I couldn’t be relied on to be healthy enough to keep up with deadlines on anything. What if I was just as helpless after the baby was born, after HG had officially left the picture? What if I was so run down that I still couldn’t function? Would I succumb to my recurring depression, made all the more intense because it coincided with postpartum changes in my life? Would I be at all fit to be a mother and primary caretaker to this new, helpless infant?

I still don’t know the answers to those questions. What I do know is that eventually, after hours of tears and conversations and being completely 100% ON THE FENCE, something finally clicked.

I remembered how happy we were when we decided to start trying for this baby. That happiness, and expectation, and joy, deserved something. Prior to getting pregnant, I was a strong, independent woman. I had spent years building up my emotional intelligence, my spiritual well being, my head and heart and soul. Now, cast adrift by the HG into a vast sea with no stars to guide me, I still needed to honor the person I had been. I needed to trust the woman who had been so blissful at the start of this new adventure with her partner.

It felt like an absolute leap of faith. I still feel suspended in that abyss, waiting to see where and how I land. It wasn’t the easier or better choice, it was just what I had to do. When you’re completely broken and don’t know how to function, sometimes you have to try to function like you would if you weren’t broken. It was all I had. Grasping at straws, and hoping that I could fake it until it felt real or right again.

Now, in week 21, I don’t know if I feel real or right yet. After a month of trying to taper the steroids, I’m finally completely off them. I can eat and drink enough to keep myself out of the hospital, though the nausea still threatens me minute to minute. I still get worse if I exert myself, and every day I live in fear that I’ll completely relapse and have to survive the dark times again. I don’t know if I’m strong enough to pull through it all again.

Making the decision gave me a small amount of relief, because I was finally free of indecision. Once you realize that you HAVE to keep surviving, you can spend more time figuring out how to do that. Still, I don’t feel like the happiness and purpose in life flooded right back in, after making that decision. Every day is a struggle, every little thing takes energy and willpower that I am never sure I actually have. The ground is still unstable beneath my feet, even if I’ve chosen to walk on it instead of laying down and giving up.

I think people who struggle with suicide can understand this sort of daily battle really well. I know that it feels similar to the times when I’ve struggled with suicidal thoughts. It can be the hardest thing in the world, putting one foot in front of the other when that choice to end it all constantly hovers over you. The fear is paralyzing, and escape seems like such a sweet option.

I’m still just gathering up the dust, on the other side of the big decision. Wondering if I can make anything out of it, or if it’s possible to try to make something out of nothing, so that I can ignore the dust entirely. I am forever changed. I will never again be the person I was before the HG. I have to live with the knowledge, every day, that all it took was one debilitating illness to make me contemplate things I never would have thought myself capable of. I feel the baby move, and I get irritated because it makes me more nauseous. I hesitate to tell anyone that any of the symptoms are getting better, because no one seems to realize that a tiny bit better means I’m still very, very ill and weak. I was all the way at the bottom of the health hill, surviving by inches. Climbing back up is slow, and tedious, and I’m not very good at it yet. The HG still threatens to take over again at any time anyway, making itself known with the nausea and food aversions and lack of appetite. I wonder if I will ever have a healthy relationship with food again.

The only certainty I’ve come away with, after that dark, dark day, is that every woman with HG has to make up her own mind. I carry no judgment for the women who will go through this and choose to terminate. I understand that decision. If I could talk to them, I would say that they know what is right for them. That no one else can make that decision for them. And then I would want to hug them, and tell them that I love them. That no one deserves the pain of facing that decision. That they are beautiful, and strong, no matter what they decide. When HG is involved, there really isn’t a right answer. Any answer at all is wrong, because HG is wrong. It shouldn’t happen to us. We shouldn’t have to endure it. We don’t even know what causes it, which means we’re miles away from a cure.

To all the women out there suffering with HG, I feel your pain. You aren’t alone. I love you, and I hope that someone is taking good care of you. I hope that you are able to come back from it, someday, to rebuild what the illness tears down. Keep surviving.


You can find the other posts in my series on hyperemesis gravidarum here.

 

 

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7 thoughts on “An HG Dark Night of the Soul

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  6. I needed this today. I choose once to go forward and twice to terminate. I am almost 8 years out from my first HG pregnancy and I think about it almost daily about all it robbed me of and also i look at my son and think I would go through it again for him because he’s amazing and yet I choose not to go through it for the other two, because mainly I think it would have killed me and I wanted to still be here.

    • I’m so sorry you had to go through this too. It isn’t at all fair, making a mother choose between her own life and the possibility of a child. Especially if the process could potentially kill both mother AND child. And I don’t think people realize how close HG comes to killing some of us. All the IVs in the world can’t keep you from the darkest parts of HG.

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