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?" 

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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. 

How Are You Feeling? A Fabulous App to Track Pain, Depression and More!

I have been using the (Free!) App How Are You Feeling for Android for over a year.  I originally downloaded to track my chronic pain from my various autoimmune diseases, because whenever my doctor asked me "So, how have you been feeling?" I really could only remember the last week or so. I wanted something that was easy, visual, and would allow me to easily see how I was feeling during a specific time range.  This app does all of that, and much more.

Quick and Easy
My favorite feature is the widget that can be installed on your home screen.  I have a terrible memory, which is totally fine for this app! Every day when I turn on my phone, the color bar is right there for me.  I just choose the color of the day (or hour, or week; its highly scalable), and enter a comment if I so desire ("Started new prescription today" or "still getting over that cold").  You make as many, or as few, entries as you want.   I usually make one entry in the morning, and one in the evening, as the way I feel is highly variable throughout the day.  Thus, I can determine at what time of day my symptoms are worse, or better!



No More Guessing. 
When I start a new therapy, treatment, or medication, I no longer have to guess as to whether its working or not; I have actual data to analyze.  For example; I recently started a new homeopathic treatment for Autoimmune disease, and I can clearly see, based on the increased number of light blue and green days, that I DO feel better.  In the past, I would have to trust my gut, or use my highly faulty fibro-brain memory- not a great data tool!




Customizable and Scalable
You can use this app to track anything; pain, mental illness, stress levels, I can see it working for almost anything that can be tracked.  I even recommended it to a developer once; to track how his application was performing; was it slow that day? was it crashing? or was it running smoothly?  Plus, it can be applied to short-term problems like a broken bone, or chronic diseases/problems.  For those using it for pain, you can choose to specifically track "pain levels" instead of just how you're "feeling".  The best part, its free!









Data is truth. 
When it comes time to analyze or look back at the data, its easy; you just zoom out and scroll to go as far back as you want; or you can choose to view each entry in a list format.



I recommend this app to anyone who is struggling to get a handle on any problem, be it health, emotions, stress, or otherwise.  Once you have the data; you have the power!

Thanks for reading!
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Got kids? Check out my new childrens book on Chronic Pain and Fibromyalgia!

wishing joyful and pain-free days to all!
~The PFM


tags: chronic pain, fibromyalgia, autoimmune, lupus, mctd, uctd, depression, anxiety, bipolar, apps, treatment, symptoms.