For an awesome analogy about living with chronic illness, please read The Spoon Theory by Christine Miserandino over at butyoudontlooksick.com
"Why don't you ever hang out anymore?"
"What do you mean you're too tired to cook dinner?"
"But you don't look sick."
I find myself having to answer these questions more and more as time goes on. It's hard to tell your friends or family that you need to stay home, especially when what they've invited you to do sounds like it'd be a total blast. It's hard to turn down the simplest church calling because you're plate is already full with every day tasks - and even then, sometimes you can't seem to accomplish everything you intend to. It's hard to tell your co-workers that your medication upset your stomach and you need to go lay down in the break room for a few minutes.
It's difficult to explain how exhausted, frail, or sick you feel when you appear to be just fine; when you look so... normal. For the most part, cystic fibrosis is an invisible disease. I've seen some who, even in the very end stages of their fight, appear to be just fine.
My husband has been to countless doctor visits with me, has spent time with me in the hospital, has gotten tangled in my oxygen tubing when I'm wearing it at night, helps me prepare and sterilize my nebulizers, watches me spend two hours a day doing breathing treatments, knows how many pills I take, and has gotten used to waiting with me while I catch my breath after walking across a parking lot. He lives with me and my CF every single day, but he still doesn't know exactly how I'm feeling unless I tell him.
So, here is how I've started trying to explain things to those who ask questions:
We all have an energy bank account. My account, much like that of anyone living with chronic illness, functions on a fairly low balance. (A doctor once told me it is estimated that the extra work it takes for someone with CF to breathe - to simply exist - increases their energy requirement to about 10% more than that of a healthy person.)
Balancing this energy account is much like balancing a checkbook. Over the years (and especially during the last 10 months or so) I've learned how much I can expect to pay for certain things, which things are necessary and which ones are luxuries. Every day, all day long, I keep a mental register of my transactions.
Some of the everyday things:
Waking up and rolling out of bed - minus $1.00
The five or ten minute coughing fit that usually follows - minus $2.00
Showering and getting myself ready - minus $2.00
Caring for a thirteen month old - minus $20.00 (give or take $5.00, depending on the day)
Breathing treatments - minus $4.00 (keeping in mind that if I skip them my account will be overdrawn by the end of the day)
Going to work - minus $10.00
Making dinner - minus $2.00
Washing dishes - minus $2.00
Folding laundry - minus $3.00
Some of the fun things:
Visiting family members- minus $3.00
Meeting friends for dinner - minus $3.00
Spending an afternoon at the mall - minus $6.00
Going to the museum, zoo, ball game, etc. - minus $5.00
Some other things I must consider:
Fighting a lung infection - minus $12.00
Running a fever - minus $10.00
Sinus pain - minus $5.00
Shortness of breath - minus $8.00
Increased cough/coughing fits - minus $3.00 (give or take $1.00, depending on the severity)
Chest tightness/pain - minus $4.00
Everything costs something, nothing is free. Sometimes what seems like the better option (grabbing fast food for dinner- minus $1.00 vs taking the time to make a decent dinner - minus $2.00) actually ends up costing me more in the long run (forgetting to take enzymes with the fast food, suffering from an upset stomach for the rest of the night - minus $4.00) so it's very important to think everything through. I have to wake up each morning, determine my energy balance for the day, then make a plan from there. Some days I can afford a few luxury items, other days I can barely afford the necessities. And when my account balance reaches zero, I'm done. It doesn't matter if there are dirty dishes stacked in the kitchen sink, multiple loads of laundry on the couch begging to be folded or friends I'd like to go visit. I simply can't afford everything, so I MUST prioritize. As Christina says in her spoon theory, "When other people can simply do things, I have to attack it and make a plan like I am strategizing a war."
So, if I choose to stay home instead of joining you in some fun activity, if you come to my house and it's a disaster again, if my child is in dire need of a bath and a change of clothes, or if you find that you always have to come to my house and I never seem to make it to yours, please don't take it personally or judge me too harshly. Chances are that my energy account has been drained for the day and I simply can't afford anything else.
Or maybe, just maybe, I have a tiny balance left over and I'm stashing it away into savings so I can be sure to join you the next time you ask.