Spoons, In My Own Words

To begin with, this is my first post in about six months. Whoops. I assume the website has been withdrawing $2 from my bank account every month, regardless. My primary excuse for not keeping up with this blog is that I haven’t had the spoons to do so. Psychological blockages, writer’s block, lack of energy, and other distractions have hindered my motivation to express myself. I figure New Years’ Eve is a good time to hop back on this wagon. I also figure that I should begin by articulating a concept that I would like to communicate to my friends and coworkers: namely, what the heck I mean when I say I don’t have spoons.

I don’t mean that I need anybody sending me boxes of plastic utensils. Rather, I’m talking about the Spoon Theory of chronic illness and disability, initially illustrated by Christine Miserandino. It isn’t a theory in the scientific sense; it’s an analogy with a catchy name. In her narrative, Miserandino describes sitting in a restaurant with a friend who asks what it feels like to live with a chronic illness; in this case, Lupus. She hands her friend a bunch of spoons, tells her to count them, and explains that each spoon represents a decision that a chronically ill person must make throughout their day about how to allocate their limited energy. Such an individual needs to know how many spoons they start out with when they wake up to a new day, and carefully plan how to use those spoons. Certain activities use up more spoons than others, and one should keep a “spoon reserve” for the unpredictable but inevitable emergencies.

The Spoon Theory has become an important part of the vernacular among those living with disabilities and chronic illnesses of a wide variety. In any space in which “Spoonies” congregate – Facebook groups or message boards, for instance – you will hear much of the same: “I don’t have the spoons for this,” “I woke up with a bunch of spoons, but then x happened and now I have none,” “I’m trying to preserve my spoons.”

Of course, everybody’s experience with disability is unique; yet, at the same time, similar. So many factors could affect how somebody experiences it, such as what kind of disability it is, the environment they’re in, what medications they’re taking, if any. That’s why it isn’t enough for me to simply link you to Miserandino’s description if the goal is to help people understand¬†me.¬†

I have multiple invisible disabilities: I am bipolar, I am autistic, I have hypothyroidism, social anxiety, panic disorder and mild agoraphobia. My body hurts a lot, but I haven’t been diagnosed with anything in particular on that front (I suspect osteoarthritis). Over time, I have learned how to allocate my spoons more efficiently, especially after being prescribed the appropriate medication to moderate my mood. Although I am capable of a lot more than I was before, it still takes a lot of planning to do what I gotta do and a lot of rest to prepare for what’s coming.

Working a full-time job, my days are almost always the same: work, then rest. Preparing, mentally and physically, for the next day. Or awaiting a weekend of deciding which errands to prioritize. Cleaning my room is something that’s always on my to-do list, but never gets done. You see, it’s not just physical activity that exhausts me: merely THINKING about engaging in physical activities costs me spoons. Sitting on my couch and observing the mess around me, weighing the enormity of the task before me, is enough to cause me to crawl into my bed and sleep instead. And then maybe, after a nap, I’ll clean about 10% of it before deciding, “Good enough.” It certainly doesn’t help that merely existing in a messy environment depletes my spoons for other activities.

I have the easiest job in the world. After a year, I’m quite skilled at getting things done in the most efficient manner, and am known as a jack of all trades. But there definitely seems to have been a shift in my job performance when my 30-hour work weeks were increased to 40 hours. Those extra two hours a day have a serious consequence on how I function for the entire day. On six-hour days, I didn’t have to worry too much about getting a lunch. I could get by on snacks, and by the time I was ready for a meal, my shift was over. Now, I have to plan for both breakfast and lunch. Take away two spoons. I have to go without my mid-to-late afternoon nap. Take away three spoons. I have to interrupt my mind-flow when it’s time for a mandatory break. Take away one spoon. I have to re-enter a mind-flow when the break is over. Take away one spoon. By the time I get home, there’s no way in hell I’m doing anything besides potatoing on the couch, watching Netflix.

Six hours was more than enough time to enter charts, run reports, and file away case notes in an uninterrupted work flow. Now there are more spaces, more in-between moments. In-between moments are very costly, spoon-wise. I’m basically sitting there, idling, wasting precious energy just by existing. The more in-between moments I have to endure – that is, the time it takes to transition between two activities – the sleepier I become and the less my mind is able to process.

This is the cost: for the first several months of my job, I was quite impressive to my colleagues and to myself. But now I feel more forgetful, more sluggish, and it hasn’t gone unnoticed. I make mistakes and come across as lazy. I become flustered when talking to clients, in person or on the phone. It feels like a definite regression to the days of grade school, when the long, exhausting days led to minimal effort and poor marks.

Needless to say, having a limited spoon reserve affects my self-efficacy and productiveness. (And I mean productiveness in activities that are worthwhile to my personal development, not by accumulating profit for capitalists.) The good news is that I’m aware of why I’m so exhausted by the end of the day, and that it’s not my fault. There are techniques I can use to help complete activities. It helps to visualize myself doing a thing before actually doing it, so that when I’m doing it, I’m not wasting too much time trying to figure out what the next step is. To-do lists and planners, as inconsistent as I am at using them, are crucial to not forgetting absolutely everything. Even if I can’t reach everything, I’m still aware there are still things to do.

Hopefully, I will be able to find accommodations at my work place that take my Spoonie-ness into account. I have a few ideas: arriving at work earlier and leaving later so that I can take a longer break (30 minutes is nothing but disruptive – an hour or two would be more worthwhile, and I could spend that time re-charging), breaking my day up by activities so that I’m not spending as much time multi-tasking, and making my colleagues aware that I can’t just jump from one activity to another on command without losing a bunch of spoons. Thus, one of my New Years’ resolutions is to not only be aware of my own limits, but to not be afraid of making others aware so that we could work together to get the job done as efficiently as possible.

Happy New Years!