There’s a meme going around Facebook that reads, “Everyone’s posting about all these amazing things they did today, and I’m like ‘Yay! I got up this morning.’” While it more than likely was intended as a parallel for something else, it describes most of my days perfectly, because I have a chronic illness.
My personal definition of chronic illness is “something that I can’t cure, but manage the best I can.”
There are numerous types of chronic illnesses: arthritis, diabetes, autoimmune diseases, lyme disease, fibromyalgia, sickle cell anemia, etc. The list is actually quite long, with most being subject to flare ups. A flare up is when symptoms suddenly get worse and can range in intensity from mild discomfort to bed rest to hospital stays or worse.
This means that every morning, I pray for a pain-free day. Yes, we should all thank God for waking us in the morning and ask that He bless us throughout the day. But when you have a chronic illness, those daily prayers become very tangible and urgent.
I always have to wonder if today is the day some body part will decide to take a sick day without warning. When you have a chronic illness, you don’t always know what will set it off. I am constantly discovering that something is a trigger for me. I love trying new foods, checking out new places, and trying new things.
But now, I have to wonder if the new experience will send my body into disorder. I can’t always plan things because I don’t know what will cause a flare up. Last week walking to the mailbox became an issue because of the combination of heat, mosquitoes, and the high pollen count in our area.
People who know about my health issues sometimes ask how I manage to homeschool my four kids. I often joke, “lots of prayers,” but it’s not really a joke. Each day I pray for the strength to not only get the day completed, but to be able to prioritize what’s really important. It’s easy to say that I put my family first, but some days, it’s not that simple. I had to learn how to deal with my health issues along the way.
At the beginning it was especially difficult, because I didn’t start homeschooling with the knowledge that something was going on with me. I was tired a lot and seemed to get sick more than others, but I chalked it up to being run down. I was even starting to think that maybe I should not be homeschooling my kids. If I was this run down and sick all the time, how could I get anything done?
There is a concept called ‘Spoon Theory‘ used in some chronic illness circles to demonstrate the amount of energy we have. Simply put, I start out with a set number of spoons every day with various activities using more spoons than others. Making breakfast may be one spoon, while taking the dog to the vet uses five.
So I have to make judgment calls on what will get my spoons for the day. The lunch with a friend may get put off because I have to deal with one of my many doctor’s appointments. I teach kindergarten CCD at our church, so on those days I try to limit other activities. Sometimes feelings get hurt and people judge me. Sometimes I beat myself up about my decisions.
An invite from another mom to make a trip to the zoo during the summer can be mentally exhausting. I know that heat is a trigger for me but obviously want my kids to go to the zoo. I have to weigh the activity against the possible discomfort later. I struggle with how much to share with others about why I can’t join the group. I listen to the other parents complain about the mom who never volunteers and wonder if she too is dealing with some unseen struggle.
I have to remember that not everyone will know enough about my story to understand why I don’t volunteer to take on more. (I don’t have enough spoons.) Some will know my story and still not understand because they saw me sign up for something else. (I have to define my own limitations.) Some will pity me and never include me in activities and plans, because they think it helps. (It just leaves me feeling worse.)
Still others will tell me to toughen up because things could be worse or will offer me some cures they heard about somewhere. (If there was a cure, believe me I would be first in line.) Some people don’t know what to say at all. (This is okay too.)
The more open I have become about my struggles, the more I have found other homeschooling moms in the same position. We all want to do the best for our children. We have to adjust our schedules around doctor’s appointments, flare ups, trips to the pharmacy, and life. We want to be included in activities and invited to do things, but we need understanding when we have to cancel. Be patient with us. We are more frustrated than you are about our lack of ability to do certain things.
Sometimes I get philosophical and wonder if there is some lesson to learn from all of this, some nugget of wisdom that I should share with the world. But usually, I just end up with, “Do what you can with what you have and enjoy each moment.” Not particularly deep or profound, I know. But it’s what keeps me going.
So I take my small blessings and count them one by one.
Today I got out of bed. Yay!