Momming The Day with Chronic Illness

What’s a day in the life of a mama who has a chronic illness like? Well it goes a little something like this.

Clifford1Little Clifford gets up multiple times a night demanding a bottle, he spits baby food in my face daily, just yesterday alone he peed on me twice, he sometimes shoves one too many cheerios in his mouth and I come very close to dialing 911, he screams in the stroller when I’m out jogging and still 15 minutes from home, sometimes all he wants is to just be held, other times he wants to squawk loudly at me in his walker while I cook dinner, he has mastered rolling so quickly I can’t rub lotion on him after a bath. He’s a peach simply put. No really he is, and I sure do love him. But doesn’t that sound HARD and EXHAUSTING??–See, I told you having a chronic illness + motherhood was tough.

Oh wait, that’s what motherhood is like for you too? Oh ok I better stop my complaining.

The truth is I’ve gotten pretty good at my physical setbacks becoming just a part of my life that I handle like a pro. Hows that for tooting my own horn? The thing about chronic illness that you have to keep in mind, is that you must always expect the unexpected. I never know when Im going to have a day when I wake up and my fingers wont bend from being so swollen–and if they are I must completely alter how I will go about my day. All the way down to how I am going to avoid leaving the house because I cannot properly harness Clifford in the car-seat on days like that.

I’m now 9 months in to this mom life, and 3 years in to the autoimmune life and I have come up with 3 tips to surviving motherhood with chronic illness.

1) Forgiveness

When I gave birth to Clifford I was a hot mess. I was on the highest dose of prednisone I had ever been on, bi weekly I was having a medication called a biologic injected, and to top it off Clifford was not growing—and nobody (as in my doctors) was blaming it on my medications, so that left plenty of room for me to blame myself. I was mad I took medications, I was mad my RA didn’t go into remission as promised with pregnancy, I was mad I needed the drugs to function, and I was mad my body wouldn’t give him the strength he needed to grow. I never breast fed Clifford either—I was terrified I would ‘contaminate’ him even more with whatever medications were floating around in me. It wasn’t until we finally brought Clifford home from the NICU that I realized I needed to nip this grudge holding attitude in the bud.

Clifford2
Here is Clifford in all his 3 lb glory. I remember just starting to tear up when they rolled me in to see him, he was so fragile yet so strong.

Would Clifford have been better off growing in a body where the was not medication? Should I have breastfed him anyway? Did the time in the NICU affect his bond with me? Those are the type of questions I had to stop entertaining.

My life and ability to mother became so much richer when I accepted the absolutes, the things that could not be changed. And by accept I mean forgive. I could not move forward without dropping all my anger, and subsequently my body began to get in sync, and need less and less medication. Isn’t it amazing how intertwined our bodies and thoughts are?

2) Patience

I have never been one for moderation. If I was going to eat an Oreo it was going to be 3 whole sleeves, If I wanted to train for a race it HAD to be a half marathon, I’m the epitome of all or nothing. Its actually a very exhausting personality trait to have, ask my husband.
When I was diagnosed with RA the first thing I did was Google how to ‘cure’ myself. I was not about to have a crippling disease, I had places to go, races to run and Oreos to eat. I remember dropping a load of money at Sprouts, determined to eat a vegan diet, and that would be my answer. Well I saw no results. That was my first wall I ran into. Then I decided, ‘fine, I will completely put my faith in the pharmaceutical companies’ and take the drugs I’m prescribed and that will eliminate my pain. Well that didn’t happen either. Even on medications, I was still flaring. I was starting to see I couldn’t win for nothing.

I had to do something very uncomfortable and completely out of my realm in order for me to be able to cope with my chronic condition and that was to SLOW DOWN. Even now, when I feel I am at my peak in terms of my wellness, I STILL wake up some mornings feeling like a train hit me. But it is the accumulation of the little decisions that ultimately determine my attitude to keep going. I have learned that if my knee and elbow are swollen, I don’t HAVE to still go on a morning jog, and just because I lay in bed all day doesn’t mean that is my forever state. Chronic illness is all about taking it one day at a time. And in fact my body thanks me when I take it slow and easy—again for a type A person that can be uncomfortable but it is what equals happiness.

3) Have a Support Tribe

This is for all my martyrs out there…here is your sign to just STOP IT! You need the assistance and love of those around you if don’t want to be completely miserable with your diagnosis. As a mom, we sort of get labeled the jack of all trades, the superhero, the glue to the home—but I’m here to shake that up and say we are not invincible, and we are allowed to have bad days, and days where we ask for help *GASP*

Yes there is a small infant in that wad of cloth (cut us some slack we were noob parents who couldn't figure the wrap out yet) My husband proudly wears him for me.
Yes there is a small infant in that wad of cloth (cut us some slack we were noob parents who couldn’t figure the wrap out yet) My husband proudly wears him for me.

My secret weapon is my husband. He’s the one person I don’t have to fake my bad days too. And if you don’t have a husband, get one. No I’m kidding. But get SOMEONE who can be your go-to, the person who you can call up and say “today I feel just awful, can you bring me a jamba juice”.

When I lived with my sister, I would regularly call her on my cell phone in the mornings and tell her to come upstairs and help push the covers off of me. At first I felt like an idiot doing that, but then it kind of became our ‘thing’. People want to help, especially family. Embrace the assistance, and your productivity will increase, as will the gratitude in your heart.

I say it all the time; disease is not for the faint of heart. Some days I curse out loud that I cant do all the things I used to—but its all about embracing what is, and not fighting it. Its hard enough being a mom, there is no need to complicate it even more by hating yourself. At least that’s been my experience.

Until next time party people.

Jack

Momming The Day with Chronic Illness

15 thoughts on “Momming The Day with Chronic Illness

  • March 19, 2016 at 10:06 pm
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    You are remarkable and beautiful in every way . Im so proud of you … Im glad I got the privillage to at one point in your life, be part of your journey .You always brought light in to my Justice days, and now as a proud, stunning, challenged mommy ! You continue to bring even more light into the world ! I am here and always will be for you 😊 I miss you always and treasure you forever ❤ . Stay strong and own the attack !

    Reply
  • March 18, 2016 at 4:55 am
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    Thank you ! Thank you!!

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  • March 17, 2016 at 3:50 am
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    Love you Jack …. you inspire me … and I miss you !!

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  • March 17, 2016 at 1:36 am
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    What an awesome post! Thanks for keeping it real Jack😍

    Reply
  • March 16, 2016 at 11:41 pm
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    Oh . my. Goodness. That was me after I had my son, for 4 years.

    I found a health system that helped me, but I totally get what you’re going through, and I just want to say, thank you for writing about it and bringing awareness to this hard subject.

    Reply
  • March 16, 2016 at 3:01 pm
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    Loved this so much!!! Such great insight into your world. Thanks for sharing!!

    Reply
  • March 16, 2016 at 5:41 am
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    Forgiveness, patience and support – Thank You this insightful post – I wish this mom strength and love and I thank Mom The Day for the incredible message they share.

    Reply
    • March 20, 2016 at 3:05 am
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      Thank you for reading!!!

      Reply
  • March 16, 2016 at 5:38 am
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    I have chronic pain and am so impressed with this young lady sharing her story. Brining to light the real day to day hardships in not only living with Chronic Illness but mothering with such a deficit is so important. Thank You.

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    • March 20, 2016 at 3:04 am
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      Thank you so much for reading! And I’m sending a virtual hug to another chronic mama;)

      Reply

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