auto-immune disease

A small cry makes its way down the upstairs hall of my quiet town home. My eyes flutter open. I fumble for my phone perched on my nightstand. I touch the screen. It’s 3:46am. The cry gets louder, more earnest. I swing my legs over the edge of my bed, slip on my robe, and take a deep breath. Pain. A dizzying throbbing in my left ear, whooshing over my ear drum. A deep ache meanders down from my elbows to my finger tips. My mouth is a desert, my legs feel heavy, and as I finally steady myself enough rise and shuffle down the hallway, my knees click and creak along the way. I make my way into my young son’s room. Through bleary eyes, I can make out his tiny silhouette clinging to the top railing of his crib. “Mama, up”, he coos softly as he outstretches his little arms. This is week three of a nasty cold, and the fourth time he’s awoken this evening. I clear the menagerie of stuffed animals off the giant wicker rocking chair in the corner of his room, scoop him up out of his crib, together in the dark, we cling to eachother in an attempt to rock away eachother’s misery. 

Thankfully, my cub’s cold passed. But it was three of the toughest weeks of my life. A toddler cold is one thing. Taking care of a toddler when you suffer from an auto-immune disease is a whole other ball of not-so-awesomeness.

I started my journey as a human guinea pig about six months after my son was born, and only after I started chatting with other new mothers about the changes their bodies were going through. I thought chronic pain was normal. My brain was frustratingly foggy, and not just in the typical “mom-brain” sort of way. Some days I was so tired, my stomach acids churned. And Every time I stepped on the scale, I watched the numbers dwindle: 5lbs, 10lbs, 20lbs. All of a sudden,I was wearing the same jean size I wore when I was 16. I had  been diagnosed with hyperemesis gravidarum in the first few weeks of my first trimester, so weight loss didn’t alarm me.  But I didn’t expect it to drop so rapidly post-partum. Next, my hair was thinning and I was leaving more in the brush than on my head. Totally normal, postpartum stuff right? Sure. But then I found myself waking up multiple times a night choking on nothing. I had no idea my body had almost stopped producing saliva completely. I woke up feeling like I had the flu. Every. Single. Day. I had chocked up all of these symptoms to postpartum hormones a lack of sleep and anemia. I told myself over and over again, nothing was wrong. I just needed to get through it. 

Sometimes our instincts are not to be trusted. It took my small community to hold up a mirror and show me I was wasting away and there was nothing normal about it. And after seeing a series of specialists, I had an answer, but it wasn’t like I could just pop a few pills or throw myself at a therapy and instantly be better.

You see, the funny thing (or not so funny thing) about auto-immune disease is there is no end game. It’s a lifelong dance, a balance of all self-care, stress management, and maintenance. HA! Three things I couldn’t be MORE useless at. If there are any Mamas reading this, you know what I’m talking about. For the most part, we live for our littles. It’s not because we wake up every morning and consciously make the decision not to take care of ourselves, we’re just operating on auto-pilot. Shit needs to get done. There are schedules that need to be kept, chores do be done, appointments to be attended, emails to be answered, meals to be made, hugs to be given, games to be played, diapers to be changed, dogs to be walked, and on, and on, and on. It’s not like you can pencil in “auto-immune suffering” on Mondays, Wednesdays and Fridays. 

Bottom line? I realized how absolutely useless I was to everyone in my life (especially my son) if I didn’t carve out the time to get on the road to healing, whatever that looked like. All of that crap that you feel like you need to get done (aside from keeping your child alive and making sure their needs are attended to), doesn’t matter. Let. It. Go. And if you can’t, email me, and I’ll happily walk you through the “art of letting shit go.” Because at the end of the day, we only get one body, and when it rails against us, we have to be extra kind to it. 

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  • Colleen
    Posted January 23, 2019 11:58 pm 1Likes

    Very lovely post my dear friend ❤️ There are so many of us moms with these diseases and learning to balance self care can be extremely challenging. I find sneaking in as much extra sleep when I’m flaring is so important! Sleep sleep sleep…people probably think it’s weird how much I sleep sometimes! Take such good care of yourself and your beautiful babe! Always thinking of you 😊

    • Jordana Manchester
      Posted January 26, 2019 2:35 pm 7Likes

      If anyone knows allllll about balance and self care, that would be you, my dear friend. Thank you for reading, and sending lot’s of hugs your way. xo

  • Cara Watts
    Posted January 23, 2019 1:27 pm 2Likes

    Hey Jords, I didn’t realise you were dealing with all of this. I also have an auto immune disease as well; rheumatoid arthritis. I’ve had it for 6 years but got diagnosed 3 years ago and I’m now on 2 lots of immunosuppressive drugs.
    The struggle is real, hope your little boy keeps you going xx

    • Jordana Manchester
      Posted January 23, 2019 8:18 pm 4Likes

      Ugh. I am so sorry you’ve been going through that. Rheumatoid arthritis can be so incredibly debilitating, what a battle. Sending a big hug across the pond to you and I hope you’re getting some proper relief. xoxo

      PS. Love all the kitty posts…so adorable!

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