Today, I’m reminded of how much I feel like a Spoonie. (For those who haven’t yet heard of the Spoon Theory, it’s a subjective–but not invalid–way of measuring how tough it is for people with chronic issues to make it through daily life. An excellent description can be found here (link to Wiki article; I know, I know, but Wiki has an increasing number of well-sourced articles!).)
The term “spoonie” is usually used to refer to someone with Chronic Fatigue Syndrome, Lyme Disease, Fibromyalgia, Rheumatoid Arthritis, or something of that nature.
But I’m starting to wonder if I have “spoons” of my own.
Sometimes (actually, probably more than “sometimes”), my “spoons” run out before my day (or my to-do list) is done.
Sometimes it’s a physical fatigue, such as in cases of a Histamine Attack or a gluten exposure.
Histamine Attacks (link to the earliest blog post I’ve written on the subject) are when, for no known reason, with totally random frequency, one side of my nose (usually the right side) will start to itch. As in, become itchy and irritated inside the nose. And that itchy nose will start to run. And tickle.
And then the sneezing gets triggered. The sneezing is usually six or seven times in a row, always violent, and never considerate of what I might be trying to do at the time. I might be typing an email, and start sneezing in the middle of a word. The word I’m typing doesn’t even have to be long. Words like “appointment” – I might feel the sneeze coming on as I type the “a” and by the time I’ve typed “appoin”, it happens. Four times in a row or more.
Usually, it comes on in the morning, but in the early days, it also came on late at night, like after 2am.
It’s irritating. And after a day like this, after hours of sneezing, sniffling, blowing, spitting, swallowing, and draining (sorry to be so disgustingly graphic), I’m usually dizzy and nauseated, with an incessant pounding head. And I’m also…
The fatigue will set in, whether I’ve taken one of those wrap-me-in-a-sedation-blanket antihistamines or not. On one Histamine Attack kinda day, I wanted to keep working with a clear head, so I opted to forgo taking an antihistamine. Yeah….no. Not happening. I was surprised when I get just as tired anyway, as I would have had I taken the meds.
Gluten exposure (link to my earliest blog post on the subject) also packs a power-punch. Within–I don’t know…minutes? Hours? Days? (It used to be 25 minutes; I could time it) I feel an extreme fatigue set in. It feels as though someone has drugged me. It’s not the comfortable-blankety-sleepy feeling I get with antihistamines; it’s just a nod-off-while-sitting-up, in-the-middle-of-writing-a-sentence sort of drowsiness. Again, as if I’ve been drugged.
Oh, and the accompanying irritability (beyond my control) can be harsh, too. And I feel like a space cadet–very ditzy. My brain gets very cloudy and I can’t think straight or absorb new information. I also lose the ability to see in the dark, which means that driving at night is either out of the question or extremely risky and anxiety-producing.
Now that I know I have Celiac Disease, I don’t go around ingesting gluten on purpose; I have to remain 100% gluten-free, all the time, for life. That’s no longer an issue…unless I unknowingly ingest some. Yes, even just a little bit. It might not be enough to see without a microscope, but my immune system knows. Gluten never escapes my immune system. And my immune system will rain hell down on the gluten, catching my own body in the crossfire…the major target of which happens to be (drumroll please)…my brain.
So gluten sucks, too.
And then, at other times, it’s a mental fatigue. This is when I’ve been pushing and pushing, usually at work (the office), racing to meet a deadline. Except that I don’t know how to do a halfway job, so all I can do is try to work faster or harder. The ability to cut corners is not a skill that I possess. In a way, that’s a good thing. But it has a price.
The price is paid dearly, usually when I start singing nonsensically in the office, long after the office has closed. I may not realize that I’m tired, hungry, thirsty, or that I have to use the restroom (three cheers for that Asperger’s-related hyposensitivity-while-engaged-in-special-interest-activities trait!) until I finally save my work on my computer, push my chair back from the desk, and mentally flop over, unable to work another minute.
And by that time, I’m unable to do much of anything at all. Sure, I can (barely) drive home and put one foot in front of another while making my way from my parked truck to my living room couch, but that’s about all I can do. During these times, I’m not even sure I could spell my name.
And sometimes, it’s a social fatigue. I can stay awake, move, and think straight, but I get overwhelmed and exhausted being around people. It’s not a uniform exhaustion; there are several factors, each of which contribute their own weight. The number and nature of the other people (both those with whom I’m directly interacting, as well as the other people in the immediate area), the activity itself, the nature and intensity of the surrounding environment, as well as my own level of resilience that day all play independent-but-intertwined parts.
I used to call it “getting ‘peopled’ out”, and I get this compelling urge to retreat back to my home sanctuary. I hadn’t known what this was, why I felt this, or why it happened until fairly recently (I now realize that it’s known as “social exhaustion”, common in Asperger’s).
When I’ve hit my social resilience limits and the social exhaustion sets in, I get anxious (not obvious, nor even perceptible by me), which manifests as irritability (which is both obvious and perceptible–to everyone). The instinctual dictum to Get Away, Disappear, and Go Home Now will simply not be ignored. That’s it.
Asperger’s itself doesn’t suck. But certain parts of it do.
At best, I’m always prone to social fatigue; that’s a constant. Asperger’s doesn’t just “go away”; it’s not a part-time job.
Sometimes, it’s not a fatigue at all. I’m prone to temporary-but-sometimes-intense bouts of depression, which sap my motivation and fulfillment, rendering me pretty much unable to engage in anything.
And sometimes, it’s a PTSD effect (link to my specific blog post on this topic). Identifying a full-on flashback is pretty easy, but sometimes I experience what I’ll call “partial-flashbacks”, where my nervous system is on DEFCON 2 or maybe 3) (link to Wiki entry for more info). DEFCON 3 is “forces ready”, DEFCON 2 is essentially “ready to strike”, and DEFCON 1 would be all-out war.
The worst scenario would be to get hit with both a Histamine Attack and a gluten exposure, while also depressed. Luckily, that hasn’t happened yet. If it did, I imagine that all of my spoons would evaporate instantly, however many spoons I started out with.
Spoons often disappear too fast. Maybe I need to, like, play with knives instead or something. 😉