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24 hours in the life of an RA Mom

24-Hours in the Life of an RA Mom

There’s no doubt about it: being a mom is hard work. But being a mom with a chronic illness, like rheumatoid arthritis, can be even more of a challenge. Finding ways to accomplish the everyday tasks of motherhood while also managing the pain and fatigue of RA is a constant challenge. It takes energy and creativity, which can often be hard to come by. But, for the sake of my two boys, I somehow manage to keep moving forward every day.

To help other mamas with chronic illnesses feel less alone – and to encourage more awareness about what we go through every day – I wanted to chronicle an ordinary day in the life of an RA mom.

A day in the life of an RA Mom

6:43 AM: I can hear the baby crying down the hall, but my body hurts too much to even move. I just woke up but I already want to cry. Luckily my husband is up. He changes the baby and brings him to snuggle in bed with me while I stretch and try to figure out how to move my body. Mornings can be extremely difficult – but baby smiles do help.

7:03 AM: Our two-year-old is up and his cough is worse than yesterday. He asks me to carry him downstairs. My husband is out walking our dog before he leaves for work (because walking the dog with two kids is usually too much for me). My sick son is so sweet and sad that I somehow find the energy to carry him down the stairs, even though he weighs more than 30 pounds. Then I grit my teeth and go back upstairs for the baby, who already weighs more than 20 pounds. Just getting everyone downstairs is exhausting.

7:42 AM: Husband has left for work and the sick toddler has just thrown up all over the couch. I’m cleaning the toddler and cleaning the couch with my sore hands. I cancel our regular playdate, which leaves me on my own to entertain the kids all morning. I haven’t been able to eat anything myself so I also haven’t taken any pain meds yet.

8:12 AM: Eventually I get the baby down for his first nap, settle the toddler in front of PBS Kids, and finally get to eat some breakfast. Once there is some food in my stomach I take some pain medication. That’s when I realize my prescription is almost gone. I email my rheumatologist for a refill.

9:39 AM: I take dinner out of the freezer and put it in the crockpot. Freezer cooking is one of my favorite chronic mama hacks: prep a bunch of meals when I am feeling up for it, grab food from the freezer on the rough days. Today is definitely going to be a rough day.

10:25 AM: The baby is up and he’s hungry. But when I put the lid on the bottle to mix the formula I somehow make it too tight and my sore wrists can’t get it off again. I dig around in the junk drawer for a jar opener while the baby screams.

11:29 AM: I finally get both kids napping at the same time. There’s tons of laundry and dishes to do but I decide to take a small break while I can. I sit on the couch and put my feet up for a few minutes. But it’s hard to rest when there’s so much to be done.

12:31 PM: Granny comes over to stay with the boys so I can go for a swim. I’m in a lot of pain and I really don’t feel like exercising – but I know how lucky I am to have her help. So I go anyways. I swim 30 laps. It’s nothing like my water polo days, when I used to basically live in the water, but it counts for something.

2:44 PM: Naptime is over. I wrestle both kids into their car seats despite the pain in my hands and wrists. Those car seat buckles can be so difficult when your hands hurt! We haven’t even started our errands yet and I’m already exhausted.

3:25 PM: We drive 10 miles to the doctor’s office. I unbuckle the kids from their car seats and load them into the double stroller. I haul my kids through the snow and into my doctor’s office – all because a new law requires me to pick up a paper prescription for my pain medication. I get the piece of paper and load the kids back into the stroller and then back into the car, buckling all the car seat buckles again.

4:30 PM: I arrive at the pharmacy. People are getting off work and the parking lot is really crowded. I’m exhausted so I use my handicap placard even though it always makes me feel guilty. I unbuckle the kids yet again and load them into the double stroller yet again to hand-deliver my paper prescription to the pharmacy. The pharmacist tells me the prescription will take 30 minutes to fill. There’s no way I can entertain the kids that long. I’ll have to come back tomorrow.

4:47 PM: We finally arrive home and I unload the kids again. I thank heaven for the crockpot because dinner smells awesome. I check the front porch and I’m excited to see that my Orencia arrived. My toddler asks me what’s in the box. I tell him it’s my medicine. “You have a lot of medicine,” he tells me. Yeah, buddy. I sure do.

6:18 PM: Dinner is eaten and the kitchen is cleaned up. My husband makes me an Epsom salt bath and then entertains the kids while I get a glorious 20 minutes to myself! After my solo soak, my sons get in the tub with me for a bit. Bubbles and giggles, splashes and smiles – bath time is often my favorite part of the day.

7:34 PM: We get the kiddos ready for bed. My husband takes our toddler to read bedtime stories while I feed the baby. Every day, when I give our baby his last bottle, I really miss breastfeeding him. I know that without the RA meds I wouldn’t even be able to hold him. I know it was the right decision to wean – but that doesn’t make it any easier.

8:00 PM: My husband rubs some icy hot into my muscles to try to relieve some of the pain I am in. It helps a little. And one benefit of not breastfeeding is that my husband can take the 3am feedings so I can take medication to help me sleep. I take my meds and head to bed early – because tomorrow I have to start all over again.

(This post was inspired from my experiences as part of a Tweet Chat experiment on Twitter. To read more – and learn about the experiences of other moms with chronic illnesses – check out #ChronicMom on Twitter or follow me on Twitter @MariahForward)

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • RockinRobin
    6 months ago

    Just reading your post wore me out! I’m 56 & have had RA & tons more autoimmune conditions for about 25 years, some conditions longer. But I never had RA while raising my daughter, most of it as a single mom. I couldn’t imagine having 2 young ones while dealing with the chronic pain & fatigue of RA. Your doing a fantastic job! Hang in there. Plus they won’t be little forever, so it might get a little easier as they get older. Hopefully your RA doesn’t progress more during that time with being on a biologic. :).

  • Wendy
    1 year ago

    Wow! This brings back so many memories of when my kids were younger. I was 39 when I had the first and was told to hurry if I wanted another so I could get back on meds to avoid irreversible joint damage. My girls are now 10 and 11 (15 months apart) and can do a lot for themselves now. I remember dropping my first born in her crib once because my hands were so stiff. I remember CRAWLING to her room once or twice because I couldn’t walk. I remember the tears we BOTH cried for the premature end to breastfeeding. And even now, they simply do not understand why our house is always so messy and why I’m always so tired. I work full-time outside the home and even have a couple of side jobs. Many days, it takes all I have just to manage the work required for our needed income. I still wonder how many of my limitations are due to RA and how many are due to being overweight. Either way, I’m always beating up on myself because the house is always a wreck and I never have enough energy to do active things with the kids. I’m glad I had kids, but had no clue how hard it would be with RA inserting itself into our lives. It’s so nice to be able to read this and comments and know I’m not alone. I wish someone would write a book for my kids to read about my illness so they would understand.

  • Mariah Z. Leach moderator author
    1 year ago

    There are some decent children’s books avoid chronic invisible illness out there – but I haven’t found one specifically about RA. Medikidz does make a comic book that explains RA. It’s too advanced for my kiddos (oldest is now 6) but might be ok for your kids now or soon!

  • gsehealth
    2 years ago

    In My Mom’s Life, she is out of bed at 6.30 am and got fresh, brush etc. She needs tea. It is necessary. Without this, the day is not completed. She could not able to do anything in kitchen. After that she got bath and worship GOD. It is also necessary. Without this too, her day is not completed. She do not travel anywhere due to pain. Every hour she takes medicines. Homepath medicine is going one. She goes to temple own without anybody help.

    She has issue of sleep also. 😉

  • elisee55
    4 years ago

    Thanks for reposting this blog. It’s not easy is it? One thing my husband does for me in the morning which it’s super sweet is bring a drink, a toast, and my pain meds if I need them in the morning… In bed!! They start working whilst I do my morning stretches to try and get my body in motion… I wear a 24/7 pain patch with a low dose but some mornings near the end of the week I need to add another med to it. I have RA, fibromyalgia, degenerative disk disease, osteoporosis with spinal compression, neuralgia from shingles, so even with some RA control with meds, my other conditions trump that with their painful grip. Having small children really must be difficult with RA, so thanks for sharing your day with us. Hopefully it will be easier as they mature. I just wanted to add my hubby’s contribution to the morning routine which has really helped my day to get off to a better start. And I’m also pursuing investigating lidocaine infusions to help manage all this pain. Can your little ones manage better now?

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Elise ~ My husband usually brings me a cup of tea in bed too. It’s the best! My little dudes are now 3.5 years old and 19 months old – so it’s still a bit of a handful for me! Maybe it’s time for me to do an update of this post!
    ~Mariah~ (Site Moderator)

  • Cindy
    5 years ago

    This is my typical day at home, sans swimming and my husband comes home after 9pm. I’m usually recovering from my very physically demanding job on my days off. Yesterday I told the kids I would take them to the library-but after blow drying my hair I’m done for the morning. This afternoon I will take my older daughter to her speech therapy-a huge event for me and I pray the younger one will take a nap in the car. I can barely turn my head today, so driving is going to be rough.
    I wish doing things with and for my kids were easier. Some days I wish I didn’t work, some days I wish I had a full time nanny. I can not wait for the day the kids will be in first grade and I will have time to exercise or just rest.

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Cindy~
    Thanks so much for sharing what you are going through. I totally understand what you mean – a full time nanny would be amazing some days! Ok, ok – most days! ~;o) But I love my kids with all my heart, and I’m sure you do too! I can’t imagine going through my life without them. And I hope that you know that you are doing an amazing job for your family – and you are not alone! I understand what you are going through and so do so many people on this site. We are here for you! Hang in there!
    ~Mariah~

  • Patricia Darstein
    5 years ago

    All I can say is…I feel your pain. Sounds like my day only difference is I have now developed Fibromyalgia on top of the RA and older than you…(49) with 1 child aged 6 who is disabled in a mild way. (he can walk etc just falls a lot, can not dress himself, unable to ride a bike and a now 9year old. I never seem to feel well. It is either pain (somewhere/or everywhere), side effects from all the meds, or just an all around flu-like feeling. I take solace in the fact that I am NOT alone, things can always be worse, and I am so blessed to have my kids and husband.

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Patricia ~ I’m so sorry to hear that you have to deal with multiple conditions. I’m sure that increases the challenge! I’m sorry we all can relate to this but I am also glad that we are not alone! Hang in there, mama! You are doing a great job! ~Mariah~

  • lucy
    5 years ago

    Thank you. I am 28, live in England, have 3 children and am also a sufferer. I have been looking for days for something in England that can offer support and advice for people who have this horrible condition and have young children. You have helped me feel I am not alone. Again thank you xx

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Lucy ~ I am so sorry that you have to deal with RA as well, but I am happy that I helped you feel less alone! I am glad that we are able to support each other. I am not super familiar with the support services available in England – have you tried reaching out to Arthritis Care? (http://www.arthritiscare.org.uk/Home) In the meantime, please remember that we are here to support you. You are also welcome to check out my personal blog if you’d like to read more about my experiences (http://www.fromthispointforward.com/) Hang in there, mama!! You are doing a great job!!
    ~Mariah~ (Site Moderator)

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