Life with spoons

[jducoeur]

I'm slowly getting over the virus that essentially ate my week. It's been an interesting experience -- not always fun, but it's provided, I suspect, a little taste of what life is like for folks for whom the Spoon Theory is everyday life.

Of course, I've been sick before, plenty of times. But this one's been a little bit different, because it hasn't been quite as much about the symptoms. I mean, when I come down with Martian Death Flu, I say to myself, "Well, *sure* I can't do anything. My head is a sloshy mass of mucus, my fever bids fair to break the thermometer and my lungs are full of super-glue." But this time, the symptoms were actually fairly mild: the fever never went over 100, there was only a little sneezing, even the cough, while annoying as hell, wasn't bronchitis-level.

But what really characterized this particular illness was *exhaustion*. From the moment it hit, there's been this lingering enervation, a sense that the energy that usually moves me just didn't exist -- or, more to the point, was very strictly limited. There was a bit of muzzy-headedness as well, but more than anything it's been a remarkable bone-weariness.

Thursday really drove the point home. I woke up, and decided that I was feeling a hair better. The cough was making me nuts, but the rest of the symptoms seemed to be abating. So I printed out the various paperwork for my new job, went over there to sign and countersign that, bought my week's comics -- and that was it. As I headed home from Outer Limits, I started to drive to Whole Foods to buy something for dinner, and realized that, if I tried to do that, I wasn't sure I had the energy to drive all the way there, shop, and get home. I could feel myself running on fumes, in a way that's rarely if ever happened to me before. So instead, I headed home, plonked into my chair, and collapsed. For the first time, I grokked the concept of simply being out of spoons.

Really, it's qualitatively different from ordinary exhaustion. I mean, I know tired. I routinely push myself past sensible boundaries and keep going -- perhaps not as often as I did ten years ago, but it's still not unusual for me to confront exhaustion, shrug it off, and just keep going. But that assumes that there are reserves that can be tapped through a little force of will. In this case, I just couldn't find anything there: those usual reserves were just *missing*, stolen away by the virus.

Very disconcerting, and it gives me a better sense of sympathy for people who have to deal with it every day. As it is, I have reasonable hope of getting over it reasonably efficiently -- my limits seem to be rising, day by day, so with any luck I'll be more or less back to normal energy before too long. And like I said, it was just a small taste: simple exhaustion with minor symptoms, rather than anything truly *bad*. But it did drive home the notion of how *different* life is with limited choices: when your reserves are so clear and visible that every little task is measurably drawing from them. Very different indeed...

Comments

[herooftheage.livejournal.com]

I'm curious, at anytime during this last week, did you end up wondering if you had H1N1, and if so, did you do anything about checking that out? Not that there are any indications that H1N1 is worse than any other strain of flu going around, but the timing might cause one to wonder.

[jducoeur]

I did wonder a little -- I came down with it the same night that the first reports of Swine Flu took over the airwaves. But it never seemed likely on the surface: my symptoms never seemed severe enough to be "flu". I *did* go see my doctor early in the week, mostly because I wanted to see how contagious she thought I likely was (regardless of *what* it was, I didn't want to spread it around), and she didn't seem especially concerned in that regard...

[dglenn.livejournal.com]

"[...] and realized that, if I tried to do that, I wasn't sure I had the energy to drive all the way there, shop, and get home."

Yes, that. I hate that.

"[...] not unusual for me to confront exhaustion, shrug it off, and just keep going. But that assumes that there are reserves that can be tapped through a little force of will."

I miss being able to do that. (Actually, for me there's a middle ground: "I know I can push a little harder, but if I do I'm not getting out of bed for three days, so let me check my calendar for the next three days first.")

"As it is, I have reasonable hope of getting over it reasonably efficiently -- my limits seem to be rising, day by day, so with any luck I'll be more or less back to normal energy before too long."

That that's not going to happen for me is the hardest part to accept, and many of my failures to quite adapt to the reality of my condition come down to denial: ten+ years on, and I'm still having trouble facing the idea that this is 'my new normal' and that I have to just give up on some things instead of planning to "get around to them once I'm better". A lie I keep telling myself in order to get through each day is, "someday I'll get better..."

---

Thanks for posting this insight, this attempt to describe my world in the language of / from the point of view of somebody still able, and for the recognition of the important differences here.

[querldox.livejournal.com]

First had that severe lack of energy way back at age 11 when I came down with pneumonia. I'd been getting steadily weaker all day at school, and when it let out I realized I wouldn't be able to walk the 4-5 blocks home. Saw my sister and told her to tell Mom to come get me.

As it happened, although I didn't quite know the specifics at the time other than that he was sick, my father was in the final few months of dying from lymphoma. A family friend saw me sitting there, exhausted, asked what was up, and when I said I was waiting for my mother to come get me, she went off on me about making my poor mother do this when Mom was having to care for my father. I was too tired to even do a comeback.

To her credit, when she learned I'd been diagnosed with full blown pneumonia, she did come and apologize.

[crschmidt.livejournal.com]

I'm in a similar position in general: I always have the reserves to pull on. But I live with someone who definitely doesn't... but hasn't actually acknowledged it and sufficiently integrated it yet. It's very hard for me to watch her, and see her being super-productive, and realize that she is screwing herself out of the next three days... and she doesn't even know it yet. (Accepting lack of spoons is hard for anyone, I would assume.) I see it over and over again, and although she's started to accept it when she runs out of steam, there's still a lot of internal guilt over it.

I'm terrible at being understanding, I'm sure, but it's even harder when I try to be understanding and get told "No, no, I'll be fine!"