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.
6:43AM: 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.
7:03AM: 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.
7:42AM: 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.
8:12AM: 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.
9:39AM: 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.
10:25AM: 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.
11:29AM: 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.
12:31PM: 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.
2:44PM: 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.
3:25PM: 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.
4:30PM: 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.
4:47PM: 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.
6:18PM: 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.
7:34PM: 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.
8:00PM: 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)