I want to be the mom who wakes up early and makes her children a hot breakfast. Some days, creating a spectacular warm breakfast for my family is possible, and then there are days when opening a Granola bar’s packaging zaps the last of my energy. The reality is that each day of mothering with a chronic illness looks vastly different for me.
What a Good Day looks like for me
Good days mean that I can make breakfast, lunch, and dinner, play with toys, and do activities like drawing with my son. In the evenings, we can go on walks and read books after bathtime. The good days feel like a weird little burst of energy, where I almost always overdo it because who knows what tomorrow will bring. My mental health always feels stronger, helping me to be more patient and be able to deal with issues as they come up. On a good day, I can wash my hair, shower, and shave my legs. All things that can be hard when I’m not feeling well. Household chores like laundry, washing dishes, and cleaning the house have an actual possibility of getting done when I’m feeling even the slightest bit “better”. I wish it lasted longer, but unfortunately, the pain comes back all too soon.
A peek inside parenting during a flare
Flare days are rough. I’m irritable, my mental health is in a bad space, and I’m in constant pain. Flare days leave me depleted of everything. I lose vision in one eye, have muscle pain and swelling, Brain fog, upset stomach, and most likely I’m bed-bound. Everything I do has to be different on these days, including parenting. During difficult days, for meals and snacks, I have been relying on premade or easy-access foods to feed my son. Examples include: Breads, Frozen foods, Hotdogs, Applesauce, and granola Bars. A lot of times, if I’m feeling terrible, my husband will volunteer to pick up dinner on the way home- (love him!). I’m mostly always worried about how to get my kid through my rough day, which can cause me so much anxiety. Instead of focusing on what I can’t do, I’m learning how to come up with solutions. Some of them have been really working for me lately. If I can’t hold a physical book, I will look it up on YouTube and let one of the many YouTubers read the book to us. If I can’t play or spend time in my son’s room, he can bring his toys, tablet, or drawings to my bedroom and have an impromptu fun movie day with mommy. These days are so hard. I always feel like a terrible mom, partner, daughter, and friend these days, but I know that’s not true.
I also experience something that I don’t hear many people talking about. As you probably know, chronic illness isn’t linear; therefore, my days aren’t just made up of predictable patterns. I experience “middle of the road” days too. On “mid” days, I wake up feeling rough and funky, but it’s not the overwhelming exhaustion of a flare day. I often think of these as my “Pre-Flare” days. These are the types of days when my energy is “limited.” It may mean that I need to take more breaks throughout my day than I had planned to. Breakfast may have to be a prepackaged bag of muffins so that I can make dinner later in the evening. Mentally, it’s a weird space to be in. It’s not a complete flare, but I still feel bad. My brain is muddled, and it feels foggy and has some pain. These are the days when I’m confused the most because the brain fog is so heavy, and it feels like no matter what I try, I can’t sift through it enough to comprehend anything. This is where the irritability kicks in, and I have to hold space for the part of me who still hates that I have to deal with this stuff. I try to give myself a lot of grace during these times, and I give myself permission to ask for help without feeling guilty (still working on this one!).
The Balancing Act
I wish I could say that I have learned how to balance it all, but I haven’t. As I previously mentioned, when I have a good day, there are times when I overdo it because I don’t know when I’ll be able to accomplish the tasks at hand in the future.
I’m really working on trying to slow down on those good days and enjoy the feeling of being able to play or hang out with family, while having some energy, even if it doesn’t last long. I’m also getting better at letting the people closest to me know when I’m having a hard time. Sometimes that means admitting that I need help with my son or with household chores. Working on these things has meant that I’ve had to adjust my expectations of myself, and at times it’s also meant ignoring the expectations that others have tried to place on me. It’s a journey!
The most important thing I hope you get from this is that you can do hard things! You may need some assistance along the way sometimes (just like I do!), but you got this! Here are two (Maybe silly but still important!) easy, encouraging tips that I want you to take with you during your good days, your bad days, and your mid days 🙂
- KEEP HYDRATED! I know everybody says this, but I’m serious!
Keep yourself hydrated! So many of my issues have been compounded by the fact that I have been dehydrated. So, if I could only encourage you to do one thing, it would be to buy the prettiest water bottle you see (even if it’s from the dollar store!),fill it up and guzzle it throughout the day. It will only help! TRUST ME!!
- REST!- I KNOW this is hard for all moms!
We have to learn how to rest. So start small! In between cooking dinner, sit down. See how that feels, see if it’s possible. If you can get your kid to do an independent activity, see if you can sit down and rest. See how you feel. If you do a TV or movie time with your kid and you put in a “quiet time” initiative during the movie, take time to see if you can rest. See how you feel. Remember, starting small allows us to make room for something bigger in the future.