I’m not much of a coffee drinker, but I’ll drink it if it’s free. A lot of people need to have two to three cups a day to function like a normal human being in the morning. Here’s what I take to function like a normal human being:
- 2 pills of Lialda
- 60mg of Prednisone
- 4 pills of coconut oil
- Gummy multivitamin
- 4 pills of probiotics
- Then last, but certainly not least, birth control
Sometimes I take Tylenol depending on my morning. I try to avoid taking any more than four because my mom has a heart attack about how my liver’s going to get toxic. I often have to wake myself up 30 minutes to an hour earlier than I need to actually get up in order to make sure I get up on time. The snooze button and I are best buddies.
It takes a tremendous amount of energy compared how I used to be as a kid. Hell, I even used to skate at 5:30, 6 in the morning before school, have a full school day, then have other extracurricular activities too. Luckily I was a smart kid and could manage such a busy schedule pretty well, which has helped me out a lot in college. I still end up biting off a lot more than I can chew because I have a hard time saying no to people… Oh well.
But life in general has gotten a lot harder for me just because of my body not working the way I’m used to it being. I have a set amount of energy per day before I end up crashing and burning. This is explained extremely well in Christine Miserandino’s “The Spoon Theory”, which I really recommend reading if you’re new to the idea of chronic illnesses and autoimmune diseases.
Miserandino explains the literal idea of measuring out life with a set amount of energy, or “spoons”. Healthy people have an unlimited amount of spoons while I maybe get 30 on a really good day, but maybe 10 on a bad one. I know one time I spent an entire day sleeping, only getting up to go to the bathroom. It was a zero spoon day.
Many of us in the chronic illness community even affectionately call ourselves “spoonies”. I think it’s pretty cute if I say so myself. I always picture someone nestled up in bed with a bowl of ice cream with a little silver spoon sticking out of their mouth.
But being a spoonie, I have to decide what’s the most important thing I need to get done before I have to sit out for the rest of the day, whether I want to or not. I usually end up talking to myself in second person during these choices.
Do you clean my room or do you feed the baby kitten? Easy, feed the kitten. Your room isn’t that bad yet anyways. But that’s going to take at least three spoons because that involves cracking open a new can of food while she’s busy trying to get to it before you can even get out a portion for her. The shock of stress from the can opening and little needle claws and teeth? It’s gonna be paaaainfuuuul.
I crawl to bed or some sort of comfortable area whenever I can in order to conserve energy. Beds are wonderful inventions. I can’t believe I used to fight bedtime as a child. I do have a pretty low-key job in a college library, so that’s always a plus. I’d like to look into professional napping someday, though.
The school year is the worst culprit for spoon spendage. It was probably even the stress of finals week that landed me in the hospital again. I already know that that’s not going to be my last hospital visit, especially with a possible third kidney stone lurking in my future.
With all of this new medication I’ve been on, especially my first infusion of Remicade being barely a week ago, I’ve been more tired and achy than I’ve ever been before. I already have a high tolerance for pain thanks to figure skating for twelve years, but this is starting to get a little ridiculous. Don’t worry, though, I’ve been taking my vitamins and drinking tons of water.
Whenever the need it truly dire, I can always borrow a couple of the next day’s spoons. It’s usually what I do when I know I have a day off coming up. It’s something I’ve been really learning to try not to do, though. Even God rested on the seventh day.