One of the ways I like to explain living with a chronic illness is by comparing it to your iPhone. Each app uses a certain amount of your battery life and it can vary depending on whether you’re using cellular data or WiFi. Then you have those apps that run in the background (which you often forget about) that sneakily drain your battery. You think you have enough to get you through the rest of your day and then all of a sudden you realize you need to get plugged into a charger STAT! You like to start your day with a full charge but every once in a while you forget to plug in your phone or your charger wasn’t plugged into the wall (I’ve done that more than I should admit) and you wake up to only 50% charge of your battery. That’s life with chronic illness. Being in bed, sleeping peacefully is my equivalent to being plugged in and charging. As soon as my feet hit the floor in the morning, I am unplugged and running on battery reserves. Certain activities require a small amount of battery power; getting dressed, putting in my contacts, washing my face. Other activities require a larger amount of power; making breakfast, getting my toddler dressed, doing laundry, showering. Then there’s the hidden apps running in the background, my invisible disease. It is constantly and discreetly draining my battery reserve. Then, there are the days that I don’t wake up with a full charge because I did not get a full, peaceful, and restful night’s sleep. Unfortunately, this is most nights. The first reaction most people and my doctors have is, “Oh! Well of course you don’t sleep, you have a toddler!” For the most part, he is not the reason I don’t sleep. We have been blessed with a beautiful child who has always been a good sleeper. The most common reasons I don’t sleep are anxiety, pain, bathroom breaks (thanks to that postpartum bladder) and pain. Did I mention pain twice? Well it’s a really big factor. I know that everyone has those nights where they don’t get as much sleep as they would like but, when your battery is really low and doesn’t get that full charge it takes even longer for it to fully charge up the next time it’s plugged in. If I keep borrowing time from the next night, by the end of the year I’ll be two weeks short. That just doesn’t work.
Last night was decent. I only woke up twice and was almost ready to wake up when BooBoo called for me this morning. We had a play date scheduled for the playground at 9:30. I knew that this was the plan but still had to talk myself into not cancelling. That’s another unfortunate side effect of being a spoonie, you second guess every activity, wondering if it’s the best use of your resources. Anyway, I gave myself a pep talk and started the hour long process of getting us out the door. This morning, “getting out the door” required getting BooBoo’s breakfast and milk, getting both of us dressed, straightening my hair, and of course wrangling the toddler to get him dressed as well. OK, that’s not too bad, an hour should be more than enough time. Hold the phone! Don’t forget to put dinner in the crock pot, you have company coming tonight. Wait, WHAT?! OK, kick the stress up a notch and move a little faster to get the vegetables cut and the roast in the crock pot and everything else done and get out the door with one minute to spare. Phew! Get into the car after chasing BooBoo in circles and do a systems check. Of my spoons, not the car. The last minute energy upgrade took a little more battery life than I had originally planned but we should still be good to go to the playground for an hour or so. Thankfully we didn’t hit much traffic and the ride wasn’t longer than it needed to be. Why is that even an issue? Because even driving requires spoons, sitting in that position is very uncomfortable for me and driving for more than twenty to thirty minutes at a time is not good.
We reach our destination and BooBoo is off and running. I like this particular playground because he can be fairly independent and it’s small enough where I don’t spend all of my time running after him. Unfortunately he is not yet of an age where I can just sit on the bench and watch but I also don’t have to follow him up the playscape anymore. I get to just wait at the bottom to catch him. We’re doing great, he’s happy and burning off some energy, I’m feeling well enough to get through this and have something left over. However, as anyone with a toddler should know, expect the unexpected. BooBoo took a tumble after a run in with a swing. He was fine but the extra energy required to handle the situation and the aftermath left me running close to empty. All I had to do was get us home so he could take his nap. I always rest while he naps and try to recharge as much as possible. It’s never enough to get a full battery but it’s usually enough to get me to bedtime. BooBoo didn’t cooperate today. No nap. Mama isn’t getting to recharge today. Unfortunately, I can’t just plug my phone in while I go about the rest of my day, duty calls. BooBoo doesn’t stop, the world keeps turning, life keeps moving. What can I do but try to limp along?
We’ve worked hard to get a support system around us and luckily today I had reinforcements scheduled to come and play with BooBoo. The thing about days like today is the same as when you run your phone down to zero battery and it shuts off. You can plug it in, but it won’t turn on right away. Today, that’s me. I’m trying to recharge but am having trouble turning on. I’ll do it because I have to (unlike your iPhone that doesn’t listen when you beg and plead for it to come back on). I’ll do it because company is coming. I’ll do it because BooBoo is banging on my bedroom door saying, “Hi Mom, hi Mom, Mom, Mom, Mom!” I’ll do it because it’s what you do. When you’ve given everything you’ve got you give a little more until someone tells you that you can stop. For me, that person is my husband. Husby is the one who knows how much I’ve got left by the look on my face. Husby is the one that comes home and can handle everything exactly right so I don’t have to waste any energy worrying about how things are going. Husby is my hero and without him, nothing would be possible. He deserves his own post for you to truly grasp how wonderful he is but for now, know this; without that one person who is your hero, your rock, the only one who truly understands your disease and all of the ugliness that comes with it, without that person, you will never have a shot at getting a full charge. Without that person, you will always spend energy worrying about things getting done. Unless you have someone who is an extension of yourself, you will never truly get to rest. Husby is an extension of myself and without him I am not whole.
“The best thing to hold onto in life is each other” Audrey Hepburn