I am a stay at home mom with two toddler boys. As an avid reader of online mom blogs, I know that it is perfectly normal for a mom of two children under two to be tired with “mom fog” and a messy bun not remembering the last time she showered. However, my situation is a little more complicated than a punch line of a mom blog. I suffer from Lupus, Rheumatoid Arthritis, and a slew of other autoimmune diseases that cause chronic pain and fatigue.
I live by the "Spoon Theory." This, in short, is how people with chronic illness measure their energy. Normal people have an infinite number of spoons throughout the day. I have a limited amount. Some days a whole shower will count as one spoon. Other days, shampooing my hair takes a whole spoon. I never know how many spoons I will wake up with so I try to take it slow and remember what my priorities are, my two boys.
My weeks are planned out in advance so I can organize my spoons to the best of my ability. Where normal people can go to a playdate and run some errands without putting too much thought into it, my moves are carefully calculated. Photosensitivity is a symptom of lupus as well. I can only be in the sun for about ten minutes before its starts to affect me. Most kids like to play outside for more than ten minutes so I have to make sure there will be ample shade or the playdate will be inside. The rest of my errands depend on how often I have to get out of the car and what the parking lot is like. If the walk is too long to the store (even with handicapped parking), it is probably not going to happen. I also don’t want to miss nap time at home. Even with a one and a two year old, I still sleep when they sleep.
I also have to make sure my days aren’t too full, even on a good day. If I try to do too much, I’m usually in bed for a week to recover from just one extra activity. I teach swim lessons three days a week for about four hours. Most people think those hours are great because you still have so much of your day to get things done. Those days are screen time days for my kids because I need to limit my activity to make sure I have enough spoons to make it to work.
Of course, as well calculated as my days seem, my symptoms are not. The days I wake up with immense pain are the days I need to really think about my priorities. My boys will always be number one. The dishes in the sink can wait until my husband does them. We can wear pajamas all day because the laundry isn’t going to get done for a while. Chicken nuggets and peanut butter sandwiches will be served for lunch for the third day in a row because reading books and playing trains with my children will always be more important. My social media accounts are flooded with happy pictures of my family and me. That’s what I want people to see and that’s what I want to remember, the good times with my family.
