Spoonie Mom Survival Guide; what to expect the first 12 months, and how to cope!

Being a new mom is hard, but being a new Spoonie mom can be HELLISH.  For those already struggling with fatigue and chronic pain first 3 months are especially overwhelming.  In this post, I will share my own experience as a brand-new Spoonie Mom, some of the Science behind its extreme suckage, and most importantly, how to cope!

Fourth Trimester
After my son was born,  I was so exhausted that I was functioning at only the most basic levels.    I remember several occasions where I literally fell asleep on the floor while my newborn son was playing in his “jungle gym”, or laying on a blanket next to me.  I wound up sicker than I’d ever been in my life, and almost inevitably, developed PPD (Postpartum Depression).  I think I cried more than my son did!  And why not? On top of typical new mom stuff (hair falling out, pimples, extra weight, ect.), I had the extra burden of Fibromyalgia.  Due to my PPD, I do not have many pleasant memories of those first 3 months; I just remember being exhausted, anxious, and overwhelemed.  As he grew older, and began smiling and engaging with me (and sleeping more!) it got much easier.  The fourth trimester; why the first 3 months are so hard.

Postpartum Flare
When I began to wean my son after about 11 months, my health took another downward spiral.  My Fibromyalgia symptoms became severe, and on top of that, I developed Mixed Connective Tissue Disease (MCTD) and Autoimmune Hepatitis.  Like many spoonie moms, I was experiencing the “postpartum flare.”  Hormones released during pregnancy and nursing are often protective in AI disease; progesterone can suppress your immune system, thus suppressing autoimmune disease.  But when pregnancy or nursing stops, so does the progesterone, this abrupt change commonly causes a flare in women with AI disease.  After dropping just ONE feeding, my symptoms took an extreme nosedive.  The next morning, I awoke with joint pain so severe I could barely walk.

Nursing complications
Nursing, however, has its own drawbacks for Spoonie moms. While nursing, antibodies are transferred through breast milk to the baby, which is great for the baby of course, but can be problematic for those with weakened immune systems.  Additionally, making milk takes a massive amount of energy and bodily resources, which cause further weakening of the immune system.  While my son was under 6 months old, I didn’t have problems with nursing, but he grew- a lot.  Our “Oversized Novelty Baby,” was off the charts for both weight and height, while I had shrunk to about 110 pounds, less than my pre-pregnancy weight. Nursing during months 6-11 depleted my immune system to such an extent that I was sick almost perpetually for the entire 4-month period.  Finally, my doctor advised my to stop nursing for my own health.  Thus, I traded one hell (perpetual colds and infections), for another (postpartum flare).

Adorable Immune System Nuke-let

The massive changes undergone by our bodies during pregnancy and nursing often exacerbate, and even cause autoimmune disease. Quote from linked NBC article: “Of the approximately 1 million (women) investigated, 25,570 developed autoimmune diseases.” 

How to survive the double-punch of having a child and having Autoimmune Disease or Fibromyalgia? Well, now that my son is almost 4, I have made about a million mistakes, and have learned quite a few things along the way.  Here are my most valuable gems of advice for new Spoonie Mamas:

Don’t wait for help; ask for it. 

Get all the help you can.  Don’t feel guilty; don’t feel lazy. You are sick, and you both need and deserve help. I was extremely lucky; both my mother and mother-in-law are within 20 minutes of my home.  Most people, however, don’t have that luxury.

  1. One option is a post-partum doula.  These wonderful women will stay at your home after your baby is born for the sole purpose of making YOU comfortable and healthy.  They will help care for the baby, but they will also help care for you.  They do, however, cost money.  
  2. Request a “meal train” from your friends.  Each friend signs up for one meal, and the meals are delivered nightly, weekly, bi-weekly– however you’d prefer. 
  3. Ask your family, friends and neighbors for help; most people are just waiting to be asked, and would gladly lend a hand.  If you need a nap, if you’re struggling and exhausted, if you need help with housework or shopping… don’t suffer alone! Call someone. And let me reiterate: Do Not Feel Guilty. 

Join a mothers group or new moms support group

Not joining a new moms group is one of the biggest mistakes I made, looking back.  While my husband was at work during my maternity leave, I spent most days alone, at home, with my son.  I was exhausted and depressed, and I didn’t have anyone that I could relate to; I was the first of my friends to have a baby, so I didn’t know anyone else in my situation.  Just sitting in a room with other exhausted moms, (even non-spoonie ones!) will make you feel less alone, happier, and more understood.  It will also give you a chance to have FUN and make friends.  Meetup.com is a great place to look for mothers groups, or if you’re a brand-new mom, ask your hospital about support groups.

Let Go.  <Best funny let it go parody ever.

Your house will be messy.  You will forget appointments, to pay bills, to wash the bibs and burp cloths, and you may wear the same sweatpants for a week.  But if you need to rest, you need to rest.  I did not heed this advice;  Although I did take naps with the baby,  I also spent several hours a day frantically cleaning and organizing, desperate for control. What I didn’t realize is that you’re more in control when you learn to let things go.  Eventually, I learned to use diaphramatic breathing and mindfulness meditation to relax and learned to let things go. It also helped me focus on what was important; my child and my health; not the dishes in the sink. 

Call your doctor right away if you don’t feel well, physically OR mentally.

If you develop new symptoms, your symptoms get worse, or you develop signs of PPD, get help ASAP.

  1. PPD sucks.  There are tons of treatment options and support resources available for women with PPD.  It is extremely common, and more so for those with chronic illness.  Don’t wait!
  2. If you experience a flare or other problems while you’re nursing, don’t wait to call your doctor.  Chances are, they will be able to do something to make you feel better.  
  3. Don’t feel guilty if you can’t nurse, or have to stop nursing to take medication.  It is OK.  No one will blame you (and if they do, ignore them.) Plenty of perfectly healthy and intelligent children were never nursed at all. Yes, nursing is a wonderful bonding experience, but if its a matter of your own health and well-being, it’s a no-brainer.  

Eat Well.

During this period, I ate terribly! Lots of frozen stuff and junk food.  It can be difficult to focus on diet while you’re a new mom, especially when you can’t even make it to the grocery store! But food should be made priority number 2:  (#1 is Sleep!). Food is medicine.  Especially if you’re nursing and cannot take actual medicine!  I love this anti-inflammatory food pyramid by Dr. Weil.  I have also had luck with a gluten-free diet in relieving my fatigue and inflammation.  Here are some more great anti-inflammatory diet tips and delicious, easy and (fast!) recipes.

Sleep as much as humanly possible. 

No Brainer!

Good luck and remember, you will survive! I am living proof ; )

**Check out my new blog especially for parents with chronic illness: Parentswithpain.com, and my childrens book on chronic pain, Fibromyalgia and Autoimmune Disease: “Why Does Mommy Hurt?” 

Want to Tweet this? Just copy and paste!: 
Spoonie Parenting Survival Guide: Infants! goo.gl/b87KsG #spoonie #mecfs #spoonie #fibromyalgia  @parentswithpain

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Joyful and pain-free days to all!
 ~PFM

Tags: Fibromyalgia, Spoonie, Lupus, MCTD, UCTD, mother, mom, baby, infant, newborn, survival, anti-inflammatory, flare, PPD, postpartum depression. 

This Post Has One Comment

  1. Thanks for sharing these tips! Chronic pain during and after pregnancy is tough to handle. Were you in pain when you were pregnant, or did it crop up after you gave birth? Either way, I'd agree that the best way to deal with pain is to tell other people that you're suffering from it. In that way, they could do something, such as giving you medication or could suggest experts that could help. Take care!

    Agnes Lawson @ MedWell Spine, OsteoArthritis & Neuropathy Center

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