Crash: to break or go to pieces with or as if with violence and noise; to fall, land, or hit with destructive force; to decline suddenly and steeply
Mirriam-Webster online dictionary
From My Journal
Here I am again, dispirited, in bed for almost two weeks and barely able to make dinner because of a recent crash. Overconfident and stupid, I forgot about pacing after over a year of just minor relapses and quick recoveries. First came the week-end of the garage sale, then the scheduled colonoscopy on Tuesday with the preparation everyone dreads on Monday, then Wednesday morning brunch at my house for some friends.
By Wednesday afternoon, I had collapsed and the aches had begun. After canceling activities for a few days, I felt a bit stronger. So then came the yearly dinner for Steve’s former law clerks at our house the next Thursday; though we brought in food, I felt the continual pressures for hostessing. Friday morning — an unexpected and traumatic funeral. Friday night neighbors came to help us eat the leftovers from Thursday. And Saturday I had promised Steve I’d go with him to the Rutgers football game. He’s an avid fan with season’s tickets and club seats; though I felt lousy in the morning, I felt more guilty that he’d have no companion, and besides, I was looking forward to the enthusiasm and noisy distractions, along with the great half-time hot dogs.
Flat on my back. Aches and fatigue squeeze my arms and legs. I feel feverish, flu-y. My joints burn. I sweat. A meat tenderizer pounds weakness and wooziness inside my skull. In the comic book illustration, after the BAM! when Bugs Bunny whomps Elmer Fudd over the head with a mallet, Elmer lies on the floor with tweety birds flying in circles over his head. I’m Elmer. The tweety birds are thoughts that used to make sense. I can’t read, cook, write, see friends, go out for dinner or a movie. I can barely watch stupid television.
I did it again.
Books and Internet sites offer tips about preventing and/or recovering from crashes. Some doctors and patients talk of the “push-crash cycle”, the “energy envelope,” “finding your limits.” It all boils down to pacing yourself to avoid a crash and resting during a crash. Big hoo-hah.
Why do I still overestimate my capabilities on days I feel better? I slide into a normal rhythm and just do stuff. I tried to be careful. I rested and napped in between events, didn’t cook, and left the football game early. Didn’t matter. Sometimes, if I just tiptoe beyond a particular day’s boundary, the next day I’m prostrate. But on another occasion, I might be fine the next day. I don’t feel the smack into the wall, so I don’t know when to stop.
Each crash brings varying degrees of regret and self-criticism, fear and slogging depression, even jealousy. Regret that I sabotaged myself because I’m an idiot who never learns. Fear that this time I won’t recover. Depression needs no explanation by now. It’s usually part of the crash scenario, whether caused by psychological or actual chemical changes. I’m jealous of people continuing to live their lives while I droop and fade. And panic.
And here’s another misery caused by the relapse-recovery pattern: each time I feel better and do more, my expectations rise as I re-experience how good it feels to be stronger and more active. With the next crash, then, I’m even more despondent, with an even greater sense of loss.
In Birdsong by Sebastian Faulks, the demoralized British soldiers fighting the Germans through the slaughters of WWI on the French battlefields, have a short reprieve during a visit to a nearby village. As they return to the front, Faulks writes:
The leaving of this undistinguished village now seemed to him the most difficult parting he had had to make; no sundering from parents, wife, or child, no poignant station farewell, could have been undertaken with heavier heart than the brief march back through the fields of France. Each time it grew more difficult. He did not become hardened or accustomed. Each time he seemed to have to look deeper into his reserves of mindless determination.
Like Faulks’ infantrymen, I feel trapped in the “bellowing darkness of desolation,” a desolation that deepens after the reprieve of each recovery.
Okay, I tell myself. This is a setback, but the Ferris wheel goes around. Now you’re down, but you’ll be up. Just hold on.
How amazing, though, that when I’m better, my imagination can’t conjure what sick feels like. Similarly, when I’m flat on my back in woozy exhaustion and pain, I can’t feel the promise of any restoration of well-being. When my chair on the Ferris wheel hits bottom, it dumps me out onto the ground, so I have to struggle to pull myself back on.
And the process seems to get harder with each revolution.
Crashing and Panic
“pertaining to Pan, the god of woods and fields who was the source of mysterious sounds that caused contagious groundless fear in herds and crowds or in people in lonely spots.”
Aaron Gell quotes Laura Hillenbrand, who has suffered with CFS/ME since 1987, in “Chronic Fatigue Syndrome: A Celebrated Author’s Untold Tale”: “It’s so frightening and hellish and disorienting. . . and on top of that there’s this layer of gripping fear, because I don’t know what will happen next, if it will get worse.” My own fears emerge in dreams of school bedlam, the same fears of being out of control and ineffectual, at the mercy of the indifferent and dislocating forces of Chaos and the unknown.
I have to teach in just a few minutes but I’m in the Girls’ Room on the other side of the school building where I discover that my pains are menstrual cramps because I’m bleeding bleeding bleeding and there’s a line of students banging on the door of the stall so I hurry to pull up my pants and run out to get my class although I’m already late
but then I start coughing and remember that I have bronchitis so I run to the cafeteria to inhale steam from a boiling kettle which plasters my hair all over my face but I have to get to class and I bolt out the door and speed through the halls, realizing there’s no direct path to my room unless I run through the library which I do even though the bitch librarian screams at me and when I arrive at my class there’s a sign that says I have to take my students outside which I do but then no one can hear me because of cars and wind and a group of boys laugh and make a ruckus so I scream at them that they will have detention with me this afternoon even though I know I don’t have the strength to stay and finally they all sit down on benches and we begin talking about Romeo and Juliet even though I don’t have my copy with me and haven’t made any lesson plans so I just wing it and lecture about Shakespearean England and when I look around most of them are doodling in their notebooks and blood is trickling down my leg
Crashing and Meditation
Just Relax, Dammit
When I focus on my breathing, in-out, in-out, I’m enveloped in sticky hopelessness and not release. Just relax, says the literature and the CDs. Just relax, says my shrink. Be in the moment. But if I start out afraid and panicked, that’s what mushrooms –fear and panic.
Sometimes I can temporarily slip into the state of it is what it is/ just as it is. So I’m sick and that’s the way it is. I can buy that during a short crash, relax into the flow of the present, not beat myself up and worry. But when I emerge from the crash, I forget that ‘it was what it was’ and I want it to be like it is now, better than it was. The next inevitable crash, then, is more unbearable and more depressing and so I have to do the whole it is what it is thing all over and I’m so tired of it.
Of it is what it is, The Urban Dictionary says “this incredibly versatile phrase can be literally translated as ‘fuck it’” and sells t-shirts, mugs, mouse pads and tattoos emblazoned with the phrase. That’s what I need: a tattoo, to stop me from freaking out, just like ancient sailors used to tattoo the letters H O L D F A S T on their fingers to keep them from falling while climbing the mast. Superstition? Or a reminder?
Steve’s reaction to a crash after a prolonged period of relative well-being is just like mine. When I complain about a symptom or indicate that I can’t get out of bed or go to a movie, he looks grim with disappointment and resentment. At first he reverts to his primitive withdrawal mode. It takes a few days for him to re-condition himself and regain the understanding and acceptance he developed during the last crash, and the crash before that, etc., etc. And with each crash, the previous level of understanding and acceptance is harder to reach.
Thus begins the new vicious cycle: I’m sick and depressed so he’s miserable and so I’m more depressed and guilty and feeling sicker, making him more miserable, making me more depressed and guilty and sicker.
At some point two or three days into a long crash, we will have our encounter: “I’m doing the best I can,” I say. “I’m really trying.” “I know,” he admits. “It’s just so hard.” “I know how terrible this must be for you,” I explain. “Yeah. What can I do for you to make it better?” he asks. “Just don’t get so grouchy,” I beg. And so we reach an accommodation that makes life bearable again, even though it totally sucks. And we wait for the next span of recovery.
Crashing and The Need to Know
Wikipedia: “The term ‘need to know’ describes the restriction of data which is considered very sensitive.. .the aim is to make it difficult for unauthorized access to occur. . .access to the information must be necessary for the conduct of one’s official duties.
Is this not a rational, cause and effect world? If something, good or bad, occurs, can we not find the reason why (except maybe for that first cause, The Big Bang)?
Ok, experts don’t know the cause of CFS/ME. It might be viral, environmental, hormonal, genetic, neurological, immunological. It might be a combination of all these.
But why can’t I know the source of my very own particular crashes so that maybe I can avoid them? How can I get the necessary security clearance to gain access to this data? Don’t I need this access in order to “conduct” my “official duties”, i.e., like, live my life? How can anyone be more “authorized” than me?
Perhaps each crash has a different cause? Healthy people visit their doctors when they experience scary symptoms. We people with CFS/ME, who experience scary symptoms 3 or 4 times a month, need on-call CFS/ME specialists who run to our sides to perform lab tests to pinpoint the particular cause of the particular crash, not necessarily in search of a cure, but simply to provide a name, a context, a kind of settling, comfortable precision that might ground us to the physical world. (“Ah, yes. I see that the viral load has bloomed again.” “Ah, yes, the brain stem shows significant swelling.” “Ah, yes, it’s a candida infection you’re fighting.”) Ah, yes.
I’m stuck in an existential crisis. With no explanations, life again turns messy and chaotic and frightening. A short crash I can manage. It’s the nature of the disease. But a long crash must have a reason. And I fear that I’m not experiencing just a crash, but actually a relapse. What does that mean, and what do I do about it?
I am reading with great interest and hope Cort’s descriptions of the broken energy production system in ME/CFS, and so appreciate the understanding that the Workwell studies “involved an exercise test but we’re not really talking about exercise with ME/CFS – we’re talking about daily activity levels. . .in ME/CFS it’s more about being able to engage in the day-to-day activities of normal life than going jogging.” I share Cort’s dismay that researchers are still just trying to prove that PEM exists rather than looking for causes and treatments, but, hey, it helps to know that something is happening.
“I feel like a blind man stumbling across strange terrain. I walk, fall down, then stand up and continue on, then blunder into marshes and struggle there for weeks, then find myself on airy upland paths, only to plunge over some unimagined precipice, to lie stunned. Then I push myself upright again, always looking for a pattern but always failing to find one.” Roger King in Love and Fatigue in America.“
Cause and effect have become disconcertingly unconnected.” Dorothy Wall in Encounters with the Invisible agrees: “To have to leave the intricacies of this disabling illness unarticulated, unexplained, is to become once again invisible.” Blindness and invisibility: two of many metaphors for the devastation that results from the unexplained crash cycles of ME/CFS.
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