Over the last few years of cohabitation, my husband and I have developed a fairly comprehensive evening to-do list to prep for the next morning, inspired by UnFuckYourHabitat. It’s stuck to the refrigerator on a piece of notebook paper, and reads:
- Pack school/work bags for tomorrow
- Wash dishes in sink
- Set up coffee/tea/breakfast
- Make lunch and put it in an obvious place
- Put keys in an obvious place
- (For me) Pick out clothes for tomorrow, including accessories
Our friends tend to look at this and make comments about how organized our system is, which is great as an ego boost, because we are, in fact, pretty organized. The down side here is that we don’t have this system to be organized.
We have this system because on any given night, we don’t know how I’ll be feeling the next morning. The nature of chronic illness, especially pain disorders like fibromyalgia (which is a party, let me tell you), is one of unpredictability. You never feel great, but there are definitely days when you wake up and, before you even open your eyes, you know it’s going to be a bad one.
Our system is in place because we have no idea if, in the morning, I’ll be able to roll out of bed and get things done, or if my husband is going to spend the forty minutes before he leaves for school walking the dog, feeding her breakfast, and then rushing through his own morning routine because I’m going to be spending every one of those forty minutes convincing my body to get out of bed and trying to figure out what my level of functioning will be. Am I feeling dizzy? Will that disappear after I take my meds? What hurts today? Can I wear the outfit that I picked out last night? (Which is a whole different adventure, and could probably be its own blog post. Sore back? Say goodbye to those heels. Oversensitive skin? No tight or abrasive fabric. There’s a reason my wardrobe has shifted from skinny jeans to bohemian dresses/tops and gentle-top leggings over the last few years, and it is 100% due to pain issues.) Can I drive? Can I type? Can I do my job?
Hence the streamlined routine. If my brain is in a total fibro fog, I’m not going to be able to go on a search for my keys, organize a lunch, etc. I tried once and ended up with a Tupperware of tofurkey (not a sandwich. Just the tofurkey.) and a red bell pepper. Needless to say, I ended up with Subway. If I’m having a bad day—even a “medium” day—I need to be able to move through morning steps as easily and smoothly as possible.
Sometimes I wake up, and I know it’s going to be a good day. When this happens, it’s a treat, and it’s nice to still be able to have a predictable morning routine, and I usually end up having time to sit and relax and watch last night’s Daily Show or something. That being said, I’m not going to plan every day around the schedule I get on a good day, because then the bad days would go like this:
The thing about chronic illness is that things that used to be easy—such as, y’know, getting up and making coffee—suddenly become tasks that need to be planned and organized. Energy that used to be endless now needs to be carefully rationed to get you through the day. Christine Miserandino of But You Don’t Look Sick (a truly fantastic blog) talks about this in The Spoon Theory, which boils down to this:
At the beginning of the day, you have a finite number of spoons. As you move through the day, doing various tasks that cost energy or cause pain, you spend your spoons. Sometimes you can borrow from tomorrow’s spoons, but then you have to get through tomorrow with fewer spoons. And we’re not talking major tasks like heavy lifting or being chased by a bear. These are tasks like showering (changes in temperature plus water pressure on oversensitive skin equals pain), getting dressed (have fun with those buttons and your stiff fingers), going up and down stairs (woo, knees), concentrating (when your brain feels like it’s moving through sludge, long bouts of concentration are exhausting). Congrats, you’ve gotten to work and you’re down four spoons. How many do you think you have left? It takes budgeting to a whole new level.
What this means is that when you do have, shall we say, high-spoon things to do, you spend your spoons really quickly, and it takes a long time to get them back.
For example: moving.
Moving is a huge process, with multiple stages, especially if you’re doing it yourself (sans moving professionals). It’s packing. Then it’s carrying all the things you’ve packed into your car. Then it’s doing your best to clean up your previous abode. Then it’s driving to your new abode (or, in our case, our temporary abode while we waited for the previous tenants to vacate our new abode), however many minutes or hours that takes (for us, it was a 7-hour drive, not counting stops). Then it’s carrying all your stuff into your new abode (stairs!). Then it’s unpacking. And organizing. All this combined with the mental energy of planning, adjusting to a new place, breaking your emotional connection to your old place, and trying to figure out how to call the new place “home.”
Needless to say, moving as someone with chronic illness is exhausting. You end up borrowing so many spoons from future days to get through the process that by the time there’s any downtime whatsoever, you end up on your back. I left my first home on a Friday and we moved into our new apartment on a Wednesday, and I spent most of Friday through Sunday curled up on the couch feeling miserable and thanking my lucky stars, individually and by name, for my dog’s ability to sense when mom doesn’t have the energy to play and my husband’s ability to comprehend that “fibro day” is essentially code for “I am so sorry but moving is just not going to happen today.”
(The dude deserves an award; seriously, I’m going to make him one. Maybe on a paper plate. Most Understanding of Chronic Illness, A++, Would Marry Again.)
And when it’s all over, you pick yourself up. Because what else can you do? You put on your war paint, whatever it might be—makeup, cardigan, winged eyeliner (major shoutout to spoonies who can get their shit together enough to get winged eyeliner; you are champions)—and you go out into the world.
Because here’s the thing about invisible illnesses: they are, as the name implies, invisible. When you break a leg, there’s a visible aspect of that: you have a cast, you have crutches, people can look at you and go “oh, crap, that person’s got a broken leg, I should help them!” With invisible illnesses, you have to tell people all the time—and, more often than not, the response is, “Oh, that’s not better yet?” Or, even more likely, “but you look so healthy!” And, of course, the reason you look healthy is because you’re doing your best to make sure people can’t see that you’re falling apart, so you can do things like, I don’t know, get a job.
And what this leads to is a sort of paradox. You want people to know you’re sick, because if you don’t, there’s no way they can understand why you can’t do something that seems to them to be a simple task, or why you can’t go out with them after a day at the office, or why you can’t be as active as you once were. But on the other hand, you want to keep some things hidden—partially because you don’t want to be “the sick one”, but also because we live in a world that is profoundly difficult to navigate when one is disabled, particularly invisibly disabled. We want to be seen as strong and capable and functional because those are characteristics that are valued by society. Even in our closest support systems—our friends, our families—the admission of disability is nerve-wracking, because we don’t want to change the way people think of us. This is especially true with our parents: we have spent our whole lives attempting to show our parents that we are capable and independent and “totally grown up now, jeez!” and to admit that no, we can’t do the things we used to do so easily, that tasks that once were taken for granted are now borderline impossible. We have to navigate the fragile balance wanting to preserve our independence and wanting to call for sympathy and comfort food.
(And, because I know she reads my blog: Hi, Mom! Can you bring some Annie’s with you when you come to visit? And some veggie chicken nuggets?)
Perhaps the most frustrating part of this is the never-ending aspect of it. Chronic illnesses are, in fact, chronic: they don’t go away. Often, they just get worse. So the balance between feeling awful and trying to look healthy, act healthy; the budgeting of spoons, the disclosures, the anxiety of looking at big tasks and trying to figure out just how to get through them while attempting to project, constantly, an image of ability—these things are our realities, our partners’ realities, our families’ realities. Permanently.
Last week, I had lunch with a dear friend of mine with EDS, another chronic pain disorder. Our conversation turned to living with chronic illness. “It’s funny,” she told me. “When you’re a kid, you fake being sick so that you can stay home from school. Now, we fake being healthy so that we can get jobs, go to school, and just…function.”
“And then we shoot ourselves in the foot,” I said. “Because we don’t look sick enough.”
“So it goes,” she said.
So it goes.