The Spoon Theory

Last night, I stumbled upon The Spoon Theory, written by Christine Miserandino--it tells a story of Christine, who suffers from Lupus and how her friends wants to know "how she does it." How does one live with chronic illness, whether it be Lupus or another unnamed disease?

Christine gives the analogy of having a a set amount of spoons, and for every single minute thing you do throughout the day, you have to give up a spoon--and once you're out of spoons, you're done for the day. No more spoons, no more energy, no more day. In this case, she gave her friend 12 spoons, and through some tough decisions, her friend could barely make it to the hypothetical dinnertime before she ran out of her spoons.

It got me thinking, do people understand what my day consists of when I complain about a less-than-perfect day (I complain more than I should as of late, my apologies) and could they walk through my day, with all of my symptoms, and still have spoons?

Here's what my day consists of....

• 6:20 am: Attempt to wake up when your alarm goes off...odds are, you were up at 4 am again when your nausea flared up and your back hurt and you just got back to sleep about a half hour ago. Luckily, you showered last night, so you just need to slowly roll out of bed when your stomach settles so you don't heave everywhere. 
• 6:30 am: Consider doing hair, but know that all it's going to do is shed on your shirt all day and irritate you and you don't have the energy to do it anyway--so up in a ponytail it is. Again. Throw on some makeup and hope that the mascara hides your tired eyes, change your clothes, brush your teeth and grab something for breakfast before you walk out the door to drive to work at by 7:00. 
• At work by 7:30, though lately it's been around 7:00 when you've been in because you can't sleep--make the trek across the street from parking your car in the cold. Why outside and not through the skywalk? Because there are less stairs and less stairs means less impact on your body. 
• Sit down at your desk, force yourself to eat the miniscule breakfast that you brought, even though you're nauseous because if you don't eat, you can't take your medicine. And if you don't take your medicine, you end up in the hospital.
• Work. Type, type, type. Back hurts. Keep typing. Refuse to look at the clock because you swear the days are getting longer, when in actuality, you just feel worse. 
• Coworkers ask you around 11:30-12:30 to go to lunch. You pass, again, because you're not hungry. You should eat because you know that come 2:30, your blood sugar is going to crash on cue, but the thought of food makes your stomach do back flips and that's just not going to happen. 
• Back to work. More typing. More coding. More of a headache. Today, you contemplate leaving early and working from home because you're in so much physical pain from your lack of sleep the night before and the fever you have that sitting in this chair for another 3.5 hours brings tears to your eyes. Can you do it? Can you make it until this afternoon? You have to work a 10-hour day tomorrow...you could skip out early, but what will your coworkers say? Can you make it? Are you strong enough? 
• Eventually, you leave. 20-minute drive home. Climb up the three flights of stairs to the third-floor apartment after battling the ice to get the mail...and realize that your blood sugar is teetering. You curse yourself for not having lunch, and try to figure out what to have for dinner. Cook? No time, going to pass out. Hello, Jimmy Johns? I swear, all of those delivery guys know me by name. 
• You force yourself to eat (an unwich, extra ham for protein and no bread because your body doesn't tolerate the gluten) and have to shower. Have to get your clothes out for work tomorrow. Have to pick up. Have to take the trash out. Have dishes to do. And then it hits you--you're so nauseous, you can't move. You cannot function. That's all going to have to wait. You have to either lay in the bathroom or close to it because you feel like you're going to throw up and you are so weak you don't know that you'll be able to make it to the bathroom if you actually throw up. You're eventually bathroom-ridden because your bowels have rebelled against you for some unknown reason and you feel like you're losing everything from the inside out. Yeah, this happens every night. Every. Single. Freaking. Night. No matter what I eat (or don't eat). No matter what I drink (or don't drink). There is no stopping it.
• Eventually, fall asleep. Rinse and repeat.

Days like today, when I have to contemplate talking to my supervisor about going home early, I know that I'm running out of spoons quickly. I know that I'm running on backup spoons and that if I don't slow down and take time to rest, I'm going right back to the hospital. But for what? For them to tell me again that they have no idea what's wrong with me?

Anyway, I post this so that maybe those who feel the need to judge me for "always being sick" and for "being a drama queen" can understand what it's like to be in my shoes. This isn't a life I chose. This isn't a life that I would want to live, given a choice between a healthy lifestyle and living in the bathroom and constant nausea--but this is my life.

It's my life, and until you live it (and not very many people can say they do--nor do I think many people could handle my life), you have no right to judge.

Just because you can't see the pain, doesn't mean it isn't there.