Warning: Very long. TL; DR included at end.
I was responding to a friend who has been tenaciously trying to get me out of the goddamned house and to have food and drink and see friends and whatnot. He’s even offered to brave the Beltway to come get me and – presumably – return me home. As I was trying to write up, for the nth time, why his attempt wouldn’t work, I realized that I probably owe a similar message to several people who I have not seen in [some large time span, ranging from several months to several years].
I’m going to link to the “Theory of the Spoons” later, so if you’ve already read that, and remember its message, you can assume that it applies to me. (As an aside, I hate that it’s called a theory, because it isn’t a theory at all. While I’m sure this makes me a nerd, I’m not sure if it lands more in the realm of language nerd or scientific method nerd. Either way, it’s the wrong damned word.)
If you haven’t read the “Theory (*shudder*) of the Spoons,” and would like to read my much less eloquent way of describing why I’ve turned into a total recluse, then by all means, read on.
On any given day, there are several factors that play into what sort of day I’m going to have, many of which are set before I even wake up in the morning. In no particular order, they are:
Energy Level (current): This is how much energy I feel I have right now. Like, “Hey! I can do a load of laundry!” or “I might be able to manage a trip to the grocery store.” This is totally a body thing. It’s in the weight of my limbs, and the need of my eyes to close. It’s in how hard it is to get up out of bed, or even to stand up. Some days, I wake up feeling like I’ve been awake for well over a day, and have run a good 10k besides. On those days, I generally don’t make it out of bed. But most days, I wake up feeling like I’ve been awake for about 10 or 12 hours, and so I have some energy, but I need to be careful with what I have left. OtherWhich takes us to:
Energy Level (perceived available for the day): This is how much energy I have to face the whole day (however long that day might be). If I don’t have anything planned beyond a shower and some computer work, and I have a decent amount of energy, I can start to look at my list of things that require energy (grocery shopping, laundry, doing the dishes, etc.), and maybe knock one or even two of those off the list. I’ve gotten reasonably good at gauging how I feel for the day in the morning, though it’s not unheard of that I unexpectedly run out of ‘Go’ several hours before I thought I would.
Things that tire me out are ridiculously numerous, but some of the biggies are: Driving long distances. This is unfortunate, since I live on the wrong side of the Beltway as far as proximity to friends goes. Walking. Standing for long periods of time. Lifting / carrying things. State changes (standing up to sitting down to standing up to walking to sitting down to standing up to…). Stress. (Yes, really.) This last one factors in, as you’ll see later, in a really vicious negative feedback loop.
“But that just sounds like everyday living stuff! None of that’s particularly hard,” you say. And you’re right. But it’s hard for me, at least for now.
Pain Level (pre- and/or post-medication): For those of you who’ve known me for a while, the most meaningful stat I can give you is this: I am currently taking more medications (both in discrete variations and in total dosages) than I have at any prior time in my life. For those of you who don’t have a specific idea as to what that means: I’m on a boatload of drugs. These tend to fall pretty evenly between “try to keep meri somewhat sane” drugs, “try to keep meri’s heart from explodiating” drugs, and “try to keep meri from whimpering like a little puppy all the time” drugs. Some days, the drugs are pretty effective. Other days, I might as well be taking sugar pills.
If I’m having a sugar pill kind of day, wave off. If I am foolish enough to try to continue my efforts to see you, I will likely spend most of my time with a fixed smile on my face, trying very hard not to cry. Or fall asleep. Or forget the difference between an inner monologue and a reasonable conversation. This is not terribly conducive to actual interaction. However, I will usually back out of an obligation when I’m in this state, instead of subjecting everyone to a more-broken-than-usual me.
Temperature (outdoor and body): I’ve always run warm, ever since I hit puberty. That is to say, in any given situation, I will feel warmer than the real world temperature should account for. My actual ‘take it with a thermometer’ temperature tends to run a few degrees below 98.6°. This isn’t what I’m talking about. I’m talking about how I perceive the weather around me. But, the whole ‘running warm’ thing has taken on a whole new dimension in the last couple of years. (I, and the people who know me best, date it to when I had my heart attack, but none of the medical professionals I talk to seem to find that interesting.)
Anyway, once I start feeling warm (in an uncomfortable way), it takes a great deal of time and/or effort (ice packs, cold showers, being naked with fans blowing on me, etc.) for me to cool down. I will begin streaming sweat like a marathon runner. I will soak through bandanas while sitting in a room that everyone else finds perfectly comfortable. In truth, while the actual temperature does play a huge role in this, I’ve found that an even bigger factor is air movement (or more accurately, lack thereof). I can be in a nearly chilly grocery store, and be absolutely covered in sweat, to the point where staff members are asking me if medical professionals need to be summoned. I do not enjoy being around people when I’m like this, as you can imagine.
Anxiety Levels: And so, if none of the aforementioned quirks of being meri are singularly or in combination sufficient to keep me from going out and doing something with you, then our friend anxiety comes into play. “Sure, I feel fine now, but what if I run out of energy just as we get to the restaurant?” “What if my pain levels suddenly spike while we’re someplace without any seating?” “What if I start to overheat, and end up throwing up?” “What if there’s no place to sit where I’m going?” “What if my heart palpitations start up, and they trigger a panic attack?” Each of these, of course, is answered by, “Then meri will somehow end up being in the middle of a huge scene / will ruin everybody else’s fun / will at the very least ruin the fun of whoever is driving.”
I have not been able to work for over a year. Despite the sudden dramatic increase in free time, with very few exceptions, I haven’t reached out to any of you and asked to share time and space. Depending on your way of thinking, you might call the reasons I listed above excuses, and that’s your right. However, it’s my reality, and I’m stuck with it.
I can count on one hand the number of people I feel comfortable with saying, “I’m done. I can’t,” and trust them to actually get it, and to not resent me for it. With these people, that doesn’t translate to, “Ok, so we’ll do another errand, and then head home,” or “Ok, I just need to go to another store or two in the mall, then we can head out,” or “Sure, we’ll leave the party in half an hour or so.” (Though, I’m often ok with being left to sit somewhere while the rest of my party finishes whatever needs to be done. Depending on pain levels, that somewhere can be a bench in the mall, a booth in a Panera, or even in the car.) I try to plan for how much energy I have, and keep my companions aware of what I think I’m capable of, but when I’m done, I’m done. I have to sit. I may have to sleep. Depending on whether or not pain is involved, I may need to medicate, or stretch out, or cry.
Going out involves too many things that can go wrong, and the failure mode usually involves my ruining someone else’s good time. Hell, I don’t even go out by myself to do stuff I want to do, because I’m afraid of getting stuck somewhere, in enough pain or sufficiently devoid of energy that I can’t drive, or worse, can’t make it back to my car. So instead, I mostly stay home. I sometimes go to YAMA (see previous entry). I’ll go to dinner with G, or maybe we’ll run some errands together, because he knows what, “I’m done” means. I see Jenn reasonably regularly. I go swimming at a local rec center. I make infrequent forays to local yarn stores. And that’s it. The rest of my life is pretty much plays out within the confines of the house I share with G and our cats, and over the Interwebs.
Some of you may not be aware that I used to be an incredible social butterfly. I had people over on a weekly basis (bad movie nights, craft nights, parties). I would organize outings for our group of friends. I would go to parties thrown by friends. I would drive to Massachusetts to have a hard cider (or 10) with a group of crazy people, then drive home the next day. And then, I essentially fell off the face of the earth for several years. I stopped showing up at events, stopped hanging out in the various online haunts we all frequented, stopped inviting people to my home. However, that interlude that was largely due to a severe bout of depression, and not the result of my physical maladies.
I’ve only recently been working my way out of this. Recognizing my lack of physical interaction with the world, G has been encouraging me to reconnect with the active digital world in which I used to participate. If I didn’t talk to people online (either through Facebook posts and chat, IRC, AIM, or whatnot), then my social interactions become limited to G, Jenn, and the cats. That’s too much of a burden for even their sturdy shoulders to handle. 🙂 So, I’ve been returning to the online world. Y’all are essentially my social life. “Demented and sad, but social.”
It’s much harder to make a similar comeback in the physical world. I want to be the person I used to be, who would drive half the Beltway to meet someone at a diner at 3 in the morning, or be the one you could count on to take pictures at the latest social gathering, or be the crazy chick running around and applying temporary tattoos to peoples’ chests (long story). At least for now, it’s not meant to be. I’m reconciling myself to that, and that kind of sucks. But I need you to know that I’m not avoiding you: I’m avoiding harshing your mellow.
This doesn’t mean that you shouldn’t invite me to things, if you are inclined to do so. I do have good days, and even runs of good days, and do sometimes manage to venture out to see people. And it’s good to feel that I was wanted, even if I can’t make it. It helps counteract the feeling that I’m slowly fading away into memory over here in my semi-subterranean cave. But, if you invite me to something, and I don’t manage to make it, please do not be offended. I thank you for including me, and wish I were able to join you.
I didn’t post this looking for pity, or even sympathy. Mostly, I need you to know that I wish to hell that I could be out in the world with you, and that I miss you. And that your good-natured attempts to get me the hell out of the house are very much appreciated, even if they meet failure more often than success.
I highly doubt anyone has actually made it to the end of this. If you have, you are either really patient, or really bored, or both. (Or, as my proof-reader pointed out, you must love me.) Whatever brought you all the way down here, thank you for your time.
As promised, The Theory of the Spoons can be found here.
TL; DR: You don’t see meri anywhere but online anymore because she’s broken, and can’t find replacement parts.
*hugs* I love you
you are loved, and I hope you find a way to get more spoons, but even if that doesn’t happen, you are still loved.
Just wanted to say I miss seeing you!
Wow. Girl, you got stuff! Wish I could give you some spoons :/
I didn’t realise you were a piece of Italian machinery! More seriously that sounds pretty awful 🙁
There is a link between cardiac conditions and thermoregulation issues/sweating in infants. I will do a little research to see if it’s a known phenomenon in adults. Even if your doctors aren’t interested, I am!