I spent the day managing legal processes and contracts. Not my favorite part of my job, but it kind of goes with the territory. When I could officially take no more, I distracted myself with my usual crutch…social media and the Internet. While perusing some of my favorite MS-related blogs, I ran across this blog post on a web site called http://www.butyoudontlooksick.com that talked about The Spoon Theory. It has been on my mind ever since.
The Spoon Theory is a tool this writer used for explaining the daily challenges of chronic illness. She was in a diner talking about it with a friend – what it’s like having a chronic illness, how it makes you feel. She looked around her and grabbed a bunch of spoons and handed them to her friend. She explained that every daily task – no matter how small – would cost her a spoon. And when she was out of spoons, she was out of spoons. She was done for the day until a new day starts with a new bunch of spoons.
Getting out of bed. Taking a shower. Getting dressed for work…all cost you a spoon. The point she was making is that when you have a chronic illness, it’s something you always are aware of and managing around (kind of like holding a bunch of spoons – that is hard to ignore). Admittedly, she made this point in a much more elegant way than I am making it here. You should go read it.
The Spoon Theory illustrates the simple reality of what daily life is like with a chronic illness. Everything you do has to be strategized and planned like a grand scheme just to make sure you can make it through your day without “running out of spoons.” Or borrowing too many spoons from the next day meaning you have two or more days without spoons to recover before you get back to normal. You conserve your spoons when you know you have a big task (like travel for me) and choose your spoons wisely when there are things you simply have to do (like work). At first, I thought it was a weird analogy. But now I kind of like it. It makes sense to me. It easily explains what my every day is like.
I’ve adjusted. I know I can’t do everything I want to do – sometimes I can’t do anything I want to do, not to mention everything I need to do. I need to plan and allow for things like rest. I need to ask for help when carrying 100 pounds of kitty litter into the house from the front porch is on the daily list of things to do. (I will never have enough spoons for that.)
It’s just the way it is. The thing I really hate wasting spoons on lately? Showering. I cannot tell you how many spoons showering requires from me. This week? I showered on Monday. And because I was busy with work all week and not able to be as flexible with my time as I need to be, I didn’t shower again until late this afternoon. It’s Friday, for chrissakes. But I have to choose. Work or shower. Fun or sleep (sleep wins most of the time). Style or comfort (again, guess which one wins?).
I am comforted by this reading and discovering writers who understand exactly what my new life is like. I feel like maybe I’m not crazy after all. This is just that fucking hard. It’s so hard that it’s hard to explain how hard it is – like that’s a spoon I’m just not often willing to give up on most days. So I find myself closing myself off a bit.
I just don’t have anything to say in most normal social situations. Thinking of not talking about how I feel or how hard this is, is sometimes just too much trouble. I guess I’m not willing to give up a spoon for that. Pretending to have something better to talk about takes effort. Making social plans takes effort. I’ve been kind of quiet on the social front, you might say.
Most of my spoons are spent on work these days. It’s just how it’s going to be for the time being. Work is too important to me right now – not just for the interaction with actual people that sometimes saves me from myself, but for the simple reality that my freedom and independence rely on my having a job. They rely on my having this job. So that’s where my spoons are going lately and I also have to be ok with that. It’s just the way it is. I’m lucky. I do love my job (except for when I am playing a part-time lawyer but that’s not every day). I work with people I truly consider friends – so there’s an undeniable social element to it. I’m good at it, so there’s an element of pride there. It makes me feel useful, purposeful and alive. I need this job for more than the paycheck. I need this job for my sense of self.
I don’t know if I’ll always feel this way. I don’t know if I will always allocate so many of my precious spoons to the activity that supplies my paycheck. Spoons, you see, are in such short supply. I have to believe that I won’t always feel this way. But I feel this way now. My work is part of how I stay part of the world I’ve come to see as my life. My work connects me to people. My work lets me use my brain in a meaningful way, and we all know how much I need to use my brain (maybe I should have been a lawyer after all).
I guess I’m thinking about this because it’s another quiet Friday night. Me and my kitties are at home not doing much now that the work for the day is finally over and my “to-do” list for next week has already been crafted (thanks to my spotty brain, I am always haunted by the fear that I will forget something important…in addition to spoons, my life is also suddenly full of little lists). The weekend is ahead of me and I’m trying to think about what I’m going to spend my spoons on.
I’ve been putting off grocery shopping for weeks. I have a basket full of laundry, that might take a spoon or two. Wow. That’s not what you call a weekend chock full of enriching activity. The most enriching activity I will probably do this weekend is sleep. I live for when I don’t have to set an alarm and tomorrow is one of those days. It’s supposed to be sunny though. So, that will make me feel like I need to be more productive.
Sometimes I can’t believe that my weekends now consist of deciding whether to do laundry or go grocery shopping. Sometimes I forget how fucked up that is. There was a time, not that long ago, that I used my spoons on things like happy hour and dinner out. Maybe some day, I will feel like doing those things again? I wonder if there will ever be a day when I have enough spoons to work AND enjoy myself?
I can hear Cheryl in my head telling me…”You’re just at the beginning. Don’t think about forever just think about today. It will get better.” I don’t know why that’s so hard for me to believe sometimes.