Once before, for funsies, I did a little glimpse into what happens in a given day of a high-risk pregnant woman. Since everyone seemed to get a kick out of it, here’s a day in the life of a new mom with a chronic illness in 10 gifs!
Math and I aren’t really best friends. In fact, we’re barely on speaking terms. There is one thing that Math and I have in common: a love of Venn Diagrams. Get it? “Have in common” haha, oh man, puns. Point being, a light bulb went off for me recently when I was thinking about how my chronic illnesses interact with my new-found motherhood. I started thinking about what the two things have in common and how having a chronic illness got me ready for the challenges of motherhood.
5. Just Dealing with It
Not all of us are lucky enough to live life without worrying about finances. For me, I worked two jobs to put myself through college. Looking back, I have no idea how I managed to do all of it. Actually, I have no idea how I manage to accomplish a lot of things. But, just like many people with a chronic illness, when I am told I can’t do something, I am just that much more determined to do it. So you learn to deal with it. Have to pull an all-nighter to cram for finals but you’re in the middle of a flare-up? Tough cookies. There are just some things in life that you really can’t bail out on no matter how much your chronic illness sucks.
And learning to just deal with the suckiness of it all turned out to build up this thing I call a “Stamina Callus.” Just like you need calluses to be an awesome guitarist (I think? I don’t know I’m not musical), you need to have a certain stamina level to survive motherhood. So when the baby needs to be fed and I’ve only had 2.7 seconds of sleep, I can just do it. Thanks Stamina Callus!
Compensating, to the average person, means to counter-balance something. To a person with a connective tissue disorder, it means constantly shifting your weight or changing your stance in order to prevent or manage a dislocated joint. I was diagnosed with Ehlers-Danlos when I was a teenager, but I had been living with it my whole life, obviously. Even from a young age, I remember wondering how my T-Ball teammates could just jump off the bench and run on the field. Whereas if I had done that, my hip probably would have given out and I’d just wipeout before even exiting the dugout.
So bending over to pick up a fifteen pound infant a gazillion times a day really didn’t seem so bad after a lifetime of faceplants. I already had experience balancing, being uncomfortable, and knowing when to ask for help to avoid a really bad spill. And trust me, once you have such precious cargo in your arms, you become even more aware of the dangerous, slippery world around you.
Clearly nothing compares to the lack of sleep you experience once you become a mother. But I would bet good money (like four bucks, maybe?) that the fatigue associated with Lupus and other autoimmune disorders could be a close second. Lupus fatigue also comes with a pesky side of anxiety. It’s like you can feel it coming on, yet you know you have little to no control over it. Imagine you are driving a semi-truck on an icy road on the side of a mountain and right as you are about to go around a scary curve, this blindfold begins to descend over your eyes and you are defenseless.
The fatigue/anxiety combo actually was a pretty accurate test run for being a new mom. In those first weeks, you’re desperately exhausted, yet every time your head hits the pillow, you immediately panic thinking the baby needs you. I’m not gonna lie. That panic is still with me almost eight months later. I still hear “phantom cries” and get up to check on the baby “just one more time.”
2. Must… Remember…To…?
Have you ever walked into a room and completely forgotten why? Well, some people with chronic illness experience these “mental fog” states on a fairly regular basis. With the amount of times I’ve searched for my keys whilst holding them in my hand, you would think I was driving to get the early bird special with my AARP discount. Not only do we experience lapses in both short and long-term memory, but we can be absent-minded as well – and not in that adorably awkward, professor way.
Long before pregnancy or motherhood had me putting dishes in the fridge, I was bringing the remote into the bathroom. That makes for a really weird sentence, but you get the point. I guess I just wasn’t as rattled or shocked by memory lapses since that had become the norm long ago.
1. Time for an Epiphany
Once, when I was walking across the stage at my hard-earned college graduation, I suspected it. Then, again, after fighting through red tape and regaining my license after seizures, I wondered about it again. But it wasn’t until I held my child in my arms did I realize my suspicions were true: “I AM A FREAKING SUPERHERO!” And guess what? You are, too! Women living with chronic illness and balancing motherhood are amazing. We are warriors, we produce life, we rise from the ashes again and again. Can you tell me how that’s not the making of a superhero? Exactly. So go find your cape because it’s about time you accepted the truth that you are an amazing forth with which to be reckoned!!!
Even though it was almost seven months ago, I can vividly remember what the first week was like with our new baby. It was exciting, scary, emotional, and – oh yeah – exhausting! I’m sure you probably could have guessed that having a newborn while living with a chronic illness wouldn’t be easy, but there’s something different about once you’re actually living it.
This isn’t meant to scare you, of course. I just want to give you a little heads up (no pun intended) on what your first week might be like. Here are five things you can expect:
5. No Wonder Sleep Deprivation is Used as a Torture Method
Apparently your newborn has not yet heard of the Geneva Conventions. If he or she had, then they’d know that sleep deprivation is listed as one of the forbidden methods of torture. Yes, you read that right, torture. And that’s just what it can feel like in the first few weeks when you are still adjusting. Sleep deprivation can cause memory lapses, hallucination, confusion, irritability, headaches, and an overall case of the yuckies (not a scientific term). So it’s no wonder that getting up to feed your baby every 2 hours, be coordinated enough to change diapers, and calmly console your baby takes a toll on your mind and body.
4. Sometimes Babies Just Cry
There really is no nice or easy way to say it, but there will be times that your baby just cries. You go through the checklist in your head – Okay, the baby isn’t hungry, wet, too cold or too hot, doesn’t have a fever – but still your little one is crying. Like any new parent, I probably made unnecessary calls to the pediatrician wondering if there was something wrong that was making my baby cry. After all, newborns can’t talk yet, so how would I know if my baby’s appendix was bursting or something?! (Which is actually a real concern I had) And just like every nurse, mother, and grandmother told me, sometimes they just cry. Don’t ignore your instincts, though. If you really think something is wrong, then please call your doctor. But do know, that even if you’ve tried everything and your baby is still crying, it’s okay.
3. Now is The Time to be Selfish
As I’ve said in posts before, my tendency to be stubborn and even a tad prideful when it comes to dealing with Lupus and a connective tissue disorder has never had a good outcome. Sometimes if I bend over, my hip dislocates. Sometimes during a flare-up, my joints are so stiff it hurts to sit in one position for too long. And as I’ve also said in previous posts, once a baby enters the picture, don’t turn down help. So with a new baby in the picture, now more than ever is the time to accept any and every offer you get. Whether someone offers to come over and watch the baby for an hour so you can sleep or someone wants to bring you dinner, SAY YES! You won’t regret it.
2. Play Nice
With hormones and tensions running high, your filter may be a little more lax than usual. You might find yourself snapping and speaking more harshly than usual. And the little things that were once just mildly irritating are now cause for WWIII. If you have a partner, the biggest piece of advice I can give you is to try and speak sweetly to them during this very crazy time. Studies show that the first year of having baby is one of the toughest for married couples. So while it’s completely understandable to worry about finances or to be grumpy about whose turn it is to change the diaper, remember that a little bit of kindness can go a long way.
1. Routine is Your Friend
All the adorable Pinterest boards and all the articles with perfectly-styled nurseries left out one little detail: it’s just not realistic. When it’s two in the morning and you need to change and feed the baby, you won’t be thinking about how cute your changing station set-up is. In reality, the most convenient set up in the first few weeks for me was having the bassinet in the living room where I could crash on the couch. The living room was right next to the kitchen, where I set up bottles with pre-measured water in them. It may not seem classy, but having some semblance of a routine – something easy that didn’t require much effort – made a world of difference for me and my sanity. I’m not saying my way is right, but just find something that works for you. You don’t need to make things harder and you certainly don’t need to worry about appearances. Do whatever fits you and your baby’s needs and I promise it will make things just a little smoother. And if all else fails, just relax and think of this adorable kitten massaging a little pug dog.