one problem with having all of my chronic illness/disability issues on the inside of my body is that it’s sometimes very hard for people to understand what it’s really like to have cystic fibrosis. add to that the fact that my default answer whenever someone asks me how i am is “i’m fine!” the only person that helps is no one. what’s the point in saying i’m happy to talk about anything related to my cf if i can’t even tell people when i feel like crud?

to the untrained eye i don’t look sick at all. i am lucky enough to be able to walk on my own, talk on my own, eat on my own, breathe on my own (albeit poorly). the problem is, these basic human functions use up a lot of energy. energy that i have a very, very limited amount of.

this is where the spoon theory comes in. before i dive into it, though, here are a few things to remember:

•   i weigh, on a very good day, 95 pounds. usually i’m hovering around 92. i don’t have extra fat or muscle to store energy.
•   my baseline lung function is maybe 30%. that means the majority of my lungs are so full of crud that they are virtually useless. what i consider a deep breath is what you consider a normal breath.
•   imagine spending an entire day with a clamp on your nose and a coffee stirrer straw in your mouth to breathe through. that’s what breathing is like for me a lot of the time.
•   these days i consider it a major success if i can go 8 weeks without developing a severe lung infection/exacerbation.

ok now spoon theory. the spoon theory imagines a person’s daily energy in spoonfuls. so, let’s say that all the energy that lives in my body in a 24 hour period can be divided up into spoonfuls. that is to say, when i wake up in the morning i have a fixed number of spoonfuls of energy to use for the whole day. when they run out, that’s it. no more spoons.

so each morning, before i even open my eyes, i do a sort of body energy scan. i try to gauge how i’m feeling and how many spoonfuls of energy i’ll have on hand for the day. when i’m feeling really good, i may have 15 spoons (this happens like maybe six times a year). when i’m sick, i may have 10 spoons. on average let’s say i have 12 spoons. the challenge upon waking up is trying to decide how i’m going to use those spoons, based on what i know about how many spoons basic daily tasks take up. it’s a hard task, and i don’t always get it right. i allocate energy poorly, i over-estimate how much i have. i tend to think i can handle more than i actually can. i have to do this every. single. day. and it never gets any easier.

here are some of the things i do during the day and how many spoonfuls they usually take up:

•   get dressed: 1 spoon
•   exercise: 4 spoons
•   shower: 2 spoons
•   eat meals: 1 spoon
•   cook meals: 2 spoons
•   meds/treatments: 2 spoons
•   run one errand: 3 spoons
•   socialize (in any capacity): 3 spoons
•   rest: 1 spoon (YES RESTING REQUIRES ENERGY DEAL WITH IT)
•   simple housework: 3 spoons
•   doctor appts: 3 spoons

here are some random things that totally throw massive wrenches into my system:

•   spontaneous or last-minute plans/plan changes: 4 spoons
•   anxiety attacks: 2 spoons
•   travel (planes, trains, or automobiles): 4 spoons
•   poor sleep: 2 spoons
•   packing up and cleaning out a house in preparation for a move to north carolina next week: ALL OF THE SPOONS*

ok now i’m going to blow your mind. when i don’t feel good, here are things that can use up spoons so quickly that they require a long rest afterwards:

•   walking from the bedroom to the living room
•   putting on a pair of pants
•   going to the bathroom
•   brushing my teeth
•   opening a pill bottle
•   eating a meal
•   being horizontal
•   coughing
•   talking
•   breathing

every day i have to do the energy scan, and decide how i’m going to use my spoons. as you can imagine, they get used up pretty quickly. and when they’re gone, they’re gone. what’s really fun is when i use up all my spoons but still have half the day left. this is what netflix (and super supportive husbands who can tell when you just can’t handle anything) is for!

i really struggle, mentally, with being tired all the damn time. just about everything makes me tired these days. when one system in the body doesn’t function properly, every system works harder than it does in a healthy person. it takes more effort for my lungs to expand with each breath, for my heart to pump blood, for my pancreas to digest food. coffee and conversation with a friend? tired. sitting on the couch while folding laundry? tired. prepping meds for the day/week? tired. writing this blog post? yep, i’m tired.

one tangential thing that may be of interest is that with each cf exacerbation, the body can only recover so much. each infection hit does a small bit of permanent damage that can’t be repaired. over time, these hits add up, and the decline becomes more apparent. i’ve probably had a dozen significant exacerbations in the last two years alone, the most recent two being particularly difficult, so i’ve experienced a fair amount of decline. i’ve gone from having a full-time job and never thinking about spoonfuls of energy to staying mostly at home and trying to decide if a shower is even worth it.

when i see you, i will have a smile on my face and maybe even a twinkle in my eye. i will laugh with you, have a meal with you, walk beside you. i will probably tell you i’m feeling good or fine and that life is grand. i say it because it is so much easier than explaining about my spoons. on the outside, i look like i’m doing just fine. on the inside, i’m running a marathon.

i challenge you to think about your day and figure out your own spoon allotment. after that i challenge you to think about and plot out your day while imagining you skipped breakfast and are breathing through a coffee stirrer straw.

the spoon theory isn’t a theory for me. it’s life. it’s not a sometimes thing. it’s an all-the-time thing. you can’t see it, but i always feel it.

know someone else with a chronic illness or disability? i’d say there’s a pretty safe bet they are living their lives by the spoonful, too. it’s what we do. it’s how we survive.

 

 

*more on this very soon. promise.