It’s going to be one of those days. I woke up with a to-do list a mile long, and every intention of doing ALL the things.
But we’re stuck in the middle of a high-pressure system, it’s cold and windy, humidity is high, and the pollen count is off the charts. Consequently, even after a massage yesterday, my joints are screaming, my head feels like it’s filled with molten lead, and I’m still not out of bed, at two o’clock in the afternoon.
Just another day in the life of a spoonie.
The question becomes then, what the hell do I do with my to-do list?
I think one of the most common complaints I hear from people who struggle with chronic illness, whether physical or mental, is that they suffer from a lack of motivation. But for us, that’s a lie.
You aren’t unmotivated. You just can’t today. There’s a HUGE difference.
I am incredibly fortunate to be able to structure my life and my career in a way that I can accommodate most of the obstacles I encounter daily with my body, and I recognize not everyone has that privilege. But there are a number of things that you can do to minimize challenges and maximize what you are actually capable of right now.
Cultivate your support system. Not gonna lie, I am profoundly grateful to have married a fellow spoonie. His chronic illness is different than mine, but when I tell him, “I don’t have the spoons for that,” he never questions me. Our support for each other in this regard is unwavering, and the end result is that I am much more confident in what I AM capable of.
Everyone needs a cheerleader. If your current situation doesn’t offer you one, then start seeking them out. I’ve found tremendous value in online support groups, and they’re relatively accessible. In person is always better, though, so find ways to add value to your social relationships. Churches, volunteering opportunities, and community support programs are out there for you.
And yeah, these are long-term solutions, but I promise you, the rewards are worth it. The spoons it takes to get there are worth the tangible benefits of having someone who believes that you absolutely can do the thing.
Implement systems. My days, (even the ones spent in bed), have a general itinerary because I’ve spent years figuring out exactly what I can do on those days. Even mental health days, those days where my anxiety or depression get the better of me, have a plan. It absolutely doesn’t matter that the plan is an entire season of The West Wing, a new coloring page, and takeout for dinner. That’s the plan, and when I accomplish it, I can feel okay about my day.
And just in case you’re wondering, you better believe there are days when I actually write that stuff down and check it off, too. I’m a big believer in pen and paper, but you don’t have to keep a physical to-do list. There’s any number of digital alternatives out there for you.
Regularly evaluate where you’re at. Part of my morning routine, before I even get out of bed in the morning, is to assess my pain and energy levels. Based on those numbers, I give myself a spoon count for the day, which is literally the number of tasks I think I’ll be able to accomplish that day. This is a vital part of my process; because it helps me go about my day without guilt. If I have three spoons, that’s it. I can do three things today. Everything else gets delegated or deferred (both of which I’ll get into in a moment).
Figure out your absolute minimums. There’s a difference between thriving and survival. I’m still technically in bed, but I’m dressed, and it’s made. It took real effort on my part AND one of today’s spoons to make those things happen, but I NEED them. Because instead of wasting the day on Facebook, I’ve spent it writing. I know what my absolute minimums are for all my different days, which means that I actually can go about my life accordingly, to the best of my ability.
Your absolute minimum to thrive will be different, but you know instinctively what makes you feel good. Make those things a priority in your daily routine, and it will give the rest of your day more purpose.
Plan ahead. One of the biggest struggles for me on days when I can’t get out of bed is making sure that everyone eats well. And by everyone, I mostly mean me. Takeout is also not always an option. I now meal plan meticulously, and batch cook when I’m feeling up to it, so there are ready-made meals available when I most need them. I also have quite a repertoire of pantry staple type meals, so that I can throw a few things in a pot and eat thirty minutes later. Most importantly, there are healthy breakfast and snack options regularly prepared, so that I can just grab something and eat.
Your struggles will be uniquely yours, but chances are good you can figure out a way to accommodate some things ahead of time. So that when these days inevitably happen, you’re already ahead of the curve. Not only is it helpful, it’s also tremendously empowering to know that you’re taking care of yourself.
Learn to delegate. This is what you had kids for, right? Yeah, I’m only kind of joking. There’s a lot of household chores on my list today that will be given to my children to do instead. Will it be done to my exacting standards, with my general attention to detail? Not a snowball’s chance in hell. Will I have to sit and supervise? Yep. Will I get frustrated and have to repeat myself eleventy million times? Quite probably.
But the actual cost of doing those things is still less than doing the task by myself, so that’s what we’re doing. Delegating to competent adult-type people is even better. We regularly evaluate household chores based on life and job circumstances around here. Folding laundry is a physically backbreaking task for me, so my husband does it. When it’s financially feasible for us to do so, we outsource that one entirely.
There are a significant number of other work related tasks that I pay someone else to do or barter services for. As much as I can, as often as I am able, I try and get help where I need it. This is not a weakness.
Keep things simple. I hate clothes. Loathe them. I hate shopping for clothes, I hate trying clothes on, I especially hate spending money on new clothes. But you would never know it from looking at my wardrobe. Because I outsource it to my husband and my mother-in-law. They both have impeccable taste in clothing, and more importantly, an understanding of what looks good on me personally. They know my palette, favorite fabrics, and that it had better be comfy.
But having my own personal shopper is only half the equation. I also regularly solicit my husband’s help (and trust me, he has much better fashion sense than I do), to cull my wardrobe into a manageable size. I utilize a capsule system, with seasonal and nursing and maternity capsules, since I still hope to do that stuff again. I get easily overwhelmed by my clothing options, so everything works well together, and I can put together an outfit on a whim—what I’m wearing is dictated by any number of factors, so when I get dressed in the morning, it has to be easy.
I guarantee you there are areas of your life that you can decide are no longer worth your time and energy. HOW you simplify is a matter of discretion; I could have just as easily decided on a uniform of scrubs in a million different colors (and to be honest, I did, which is how I came by my current arrangement, as I was the only one happy with that idea). But it still works. I don’t have to think about my clothes, and they definitely look better than scrubs would have.
Learn to be flexible with deadlines. I’m not talking about the hard and fast deadlines that are impossible to get out of. I’m talking about everything else. Because trust me, almost everything falls into this category.
This isn’t some platitude about how laundry and dishes can wait, because babies or chronic illness won’t. But it is important to come to an understanding of what must be done today, and what can wait until tomorrow.
How many of your deadlines are self-imposed? How many of those self-imposed deadlines are attached to things that you want or need to do? How many of those things are really actually things you need to do, not things society has told you to do? I can’t answer these questions for you, but I can practically guarantee that if you really answer them honestly, you’ll find that you don’t have as many deadlines as you thought you did.
Which means there’s always tomorrow. It’s now well after midnight. My list has grown substantially since I first started writing about it this afternoon. In fact, I added more than I got done. My work day isn’t quite done yet, but when it’s all said and done, I’m deferring a lot of tasks to tomorrow.
I’ve learned to be okay with this. This isn’t procrastination. It’s not laziness, either. It’s the fundamental realization that over the course of my lifetime, I will be more than what I did this day.
Productivity with chronic illness isn’t just about what you do. It’s about how you think about it.
A change in perspective is required. Look, you know what you’re capable of. You know the same as I do that your illness isn’t an excuse, it’s your reality. But the only way it stops you is if you let it. I’m not physically able to do any strenuous hiking now, much less the rock climbing that I once loved. But it doesn’t mean I’ve abandoned the outdoors. It’s just experienced in smaller doses, or with a really great air mattress.
Your reality may have changed, but your dreams don’t necessarily have to. You always have a choice in the shape of your dreams. And if it’s really important to you, you will figure out a way to make it happen.
A few final thoughts.
You already know this one, but keep some extra spoons in reserve. I probably would have neglected to mention this, except that life intruded while I was finishing editing this piece, in the form of vomiting from the five-year-old. The husband was still at work, and the teenager is completely unhelpful in these situations, so I was on my own. That meant I had to strip down his bed, plus go through several wipe downs and clothes changes. Not to mention the carnage that was the bathroom. This was physically backbreaking and draining work, but it was unavoidable.
And I am wiped out. I have nothing left to give, but I’m still not quite yet done for the day. Which means I have to generate an extra spoon or two.
Figure out how to create emergency spoons. In the long run, these will cost you. I tend to sacrifice sleep to make these things happen, which is often counterproductive. But when you gotta, you gotta. Tonight, that means a hot bath and really good sex. Between the two, I’ll be able to do the final few things on my list that can’t be put off until tomorrow.
At the end of the day, it won’t have been the day I planned. Not by a long shot. But I’m definitely counting it as a win.