This pregnancy is killing me. Figuratively.

by Veronica on April 6, 2012

in Ehlers Danlos Syndrome, My body is broken., Pregnant. Finally.

First, I will start with a disclaimer:

Yes, I know how lucky I am to be pregnant. All of my pregnancies have been flukes and I am very grateful that I conceived naturally, despite being told that my chances were pretty terrible. But being pregnant was not the end result – having a real live baby at the end is. Thus, I reserve the right to hate the means and love the end.

Fourth pregnancy, third baby. I underestimated how hard this was going to be on my body.

I have a disability, which I don’t think about very often, because this is just me. I pass it off as “dodgy joints” or “crappy genetics” but when you get right down to it, I have a disability and my joints dislocate spontaneously, leaving me writhing in pain. I also throw up, can’t regulate my own body temperature properly and have a slightly leaky heart valve, although it’s “nothing much to worry about yet”. I probably also have POTS, but having a complicated genetic disorder means that no one really wants to talk to me about the secondary issues that a fucked up genetic code causes.

This is amongst other things that I try really hard not to think about.

The good news is, my brand of Ehlers Danlos doesn’t come with spontaneous arterial rupture or aneurysm, and they’re pretty sure that if I’ve managed to carry two pregnancies to term without my uterus rupturing, then it’s unlikely that there will be any major complications with this pregnancy.

I’m also incredibly lucky that unlike many other women with Ehlers Danlos, I have two and a half babies to show for my four pregnancies and we are incredibly hopeful that my success rate will be a whopping 75% by the time August rocks around. If I was a duck who’d hatched three babies out of four eggs, you’d keep me. A lot of women with Ehlers Danlos will go through miscarriage after miscarriage, failing to bring a child to viability at all. I seem to have missed that part and for that, I am grateful to my uterus.

All that said, my joints are falling apart. At almost 19 weeks pregnant, the relaxin is firmly coursing through my system and my ribs have forgotten what their main job is meant to be. I keep dislocating my left shoulder while I sleep and my pelvis is more like a wobble board that a supportive girdle of holdi-togetherness.

Last night, after running my children a bath, I turned around and felt my pelvis slip. One hip went one way and the other went in an entirely new direction, while I wondered if I was going to be able to walk again. A little bit of quick thinking and some serious remembering of what a physio said to me and I gingerly managed to get onto all fours and rock my pelvis back into place. The baby didn’t aid me in this, considering s/he wanted to lie transverse, with each end pushing on one half of my pelvis. I guess it was trying to make things roomier in there.

I joked to one of the mums at school that if I can stay walking throughout this pregnancy, I will be incredibly proud of my joints and I am scared that it isn’t going to happen. The pain is pretty bad and somehow, panadol is pretty useless on the ‘your whole body is falling apart’ pain.

Pregnancy is miserable, for me. The baby at the end is not miserable, but pregnancy is the hell I have to go through to get a baby. Even labour is not this tough, or this bone crushingly painful.

My blood pressure and various autonomic nervous system functions are not working as well as they ought and I seem to spin between feeling moderately unawful, to wondering if the floor is going to come up and smack me in the head. (For the record, I’ve not passed out yet, but I’m well versed in laying down wherever I am, in order to avoid the blackout)

It’s exhausting, feeling this crappy. Amy is at school full time and while the break is amazing, she keeps asking why I’m not doing parent help. I tell her it’s because I’m unwell, but really, it’s not all that pleasant to be the one who can’t do anything, because you’re too sick.

I was reading on a “your guide to pregnancy week by week” site about all the symptoms of pregnancy that should have eased by now. The second trimester is meant to be the golden trimester and all I want to do is shoot the writers. The nausea should have eased! Your exhaustion should be a thing of the past! Headaches are caused by hormones and should stop by the second trimester! I want to shoot them, and then bring them back so that I can shoot them again. Pregnancy is miserable.

Finally, in a moment crowning glory, the midwifery appointment that I was meant to have a few days ago – they wrote down the date incorrectly, so that I missed the appointment, because of an admin error. When they remade the appointment, instead of being at the clinic closest to my house, it’s now at a different clinic, a further 25 minutes drive away (40 mins away all up), at a totally inconvenient time, if I wanted to spend any time at home between school drop off and school pick up. I’d ring them and change it, only I’m scared that it will make things even more inconvenient for me. Better the devil you know, and all that jazz.

It’s a good thing I can feel this baby wiggling and kicking around in there and that I wasn’t relying on the midwife to provide me with proof of life, isn’t it?

I know that most of this discomfort will fade into the background once the baby is born and that by 6 weeks post partum, I should be feeling somewhat better. All of this will be a vague memory of discomfort and that is what I’m hoping for.

In the meantime, I am just very glad that this is the last time I am going to be pregnant.

Caz April 6, 2012 at 4:33 pm

Hang in there 🙂 I hate pregnancy – but I don’t have any of those other complications to deal with and really shouldn’t complain at all. Hope the next 21 weeks move fast and give you some peace.

beth April 6, 2012 at 4:59 pm

Wish I could halt that advancing relaxin for you 🙁 sounds like times are tough. Pregnancy is hard enough without all the added extras that you have to deal with. The only medication I can think of is chocolate. And more fudge…

BB April 6, 2012 at 5:51 pm

Gentle hugs. I did it the other way round – great pregnancy (ish, if you consider a completely busted knee through final 3 months of 1st pregnancy – my fault and with no blame on impending motherhood)… and then appalling first year. I somehow failed to finish making my kid’s heart. An oversight I would NOT recommend.

Hang in there. You are amazing for tackling this challenge again.
🙂
BB

Sharon A. April 6, 2012 at 6:44 pm

My first pregnancy was so easy, I didn’t know what people complained about. The bad stuff was bearable, and I looked amazingly glowy.

My second pregnancy was harder, but I managed to bear it. I looked like crap.

My third pregnancy was tough, and I was shocked and saddened by how much I hated it. It couldn’t go quickly enough, and I hated the birth too. My pelvic floor threatened to prolapse and it was horrific. Getting bubs out and meeting her was definitely the highlight.

I’ve had infertility in the past, so I know all about the guilt and the ‘I shouldn’t be complaining’ side of things. Point is that your body doesn’t care how much you struggled to get this kid, or how much others are struggling. When I was infertile before having my middle child, my son, everytime I heard someone complain about pregnancy I silently told myself I’d ‘never’ complain if I got pregnant again and how dare these women.

Life has a funny way of teaching us about bold proclamations, I learnt. I did complain, and so I should’ve. lol.

I hope things get better for you. I, like you, vowed to not have anymore kids after that third baby. The only way I would is if it were an accident.

Dorothy @ Singular Insanity April 6, 2012 at 7:16 pm

That is a very tough way to do a pregnancy. You are very brave to be doing it. It’s a shame we can’t wrap you up in cotton wool and hide you away until the baby is born.

river April 6, 2012 at 11:14 pm

I’ve already mentioned my four easy, no complications pregnancies, so I won’t do it again.

I think you should stop reading those pregnancy week by week sites, they’re clearly written for women who don’t have EDS, and knowing that at such and such a stage you shouldn’t be headachy, vomity or whatever, isn’t going to make you happy. Because you do have EDS and your body is this way with or without pregnancy, just more so with.

I don’t mean to sound as if I’m telling you off or anything, just that getting angry at these websites is pretty useless and will only make you feel awful.

Beth Sterling April 7, 2012 at 2:51 am

I have experienced pain through out what I consider all of my connective tissue. Doctors are not able to really pin it down other than to say it is fibromyalgia.
I do a lot of stretching exercises and get involved in my day. If the pain begins to darken my spirit I picture myself on a shore near a boat. I then leave one version of myself with the pain and get in the boat and let the island with the person feeling the pain recede over the horizon.
It does require a fair amount of concentration so it is not something I can do in grocery aisle #7 but about every other day I do find it to be somewhat effective

Arienette April 7, 2012 at 11:59 am

“Even labour is not this tough”
Snap. I once said that I would rather give birth every day for nine months than be pregnant again. People laughed but I was completely serious (although if I can leave behind the 3 week long slow-labour and just have the last day, that would be helpful)

Even if I am ever lucky enough to keep another pregnancy, I will still bitch and moan and cry. You’ll find none of that self-righteous tutting coming from my corner, none of that ‘just be grateful’ bullshit. I think of it as like telling someone who’s been kidnapped and imprisoned for 20 years ‘Well just be grateful, most kidnap victims die in the first day!’ oh yeah. Super helpful. P.o.W torture victims should just man the fuck up and be grateful, because they might get out alive! It’s bullshit. It’s utter bullshit. Being pregnant and disabled is hard. Really hard. Growing a human being from scratch is always tough, but doing it while also trying to literally stop yourself falling apart every moment of every day is just beyond words.

Ali April 7, 2012 at 8:14 pm

I know this doesn’t help but in the name of solidarity- oh how I know this. I am grateful for all of the babies I was able to carry to term after being told, like you, that I might not have any babies and suffering some losses. Everything you said here though, was pregnancy for me. The nearly passing out (although I’d be lying if I said that didn’t happen a fair bit anyway) and the pelvis, and, and, and. You poor, poor thing. Chin up. Rest as much as you can (insert maniacal laughter) and just hang in there honey. xxx

Danielle April 7, 2012 at 9:43 pm

You are one very brave, strong women, i am in awe, may your joints and ligaments grant you the strength you need to see this pregnancy out in one peace. I take my hat off to you. Xxxx

Hannah April 8, 2012 at 2:51 am

Oh I feel for you so much – I had SPD bad in my 2nd pregnancy, so I get the whole joint thing, but so feel for you with the other stuff as well, the dislocating joint pain is bad enough to deal with, and you’re right, it’s SOOO worse than labour! Hang in there, just keep counting down till the day your lovely baby will be born, and the pain will ease xxx

Signe April 9, 2012 at 5:37 pm

I cannot have children, which has not been easy to accept, but that does not mean that I think “you are so lucky to be able to go through this”. Anyone telling you that, has a serious problem.
Hang in there. Judging by the other two, you have a beautiful reward waiting in the end.

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