Tuesday, August 07, 2007


Day 235: Faint

Something's wrong with me. My energy plummeted last week, I nearly passed out on Sunday afternoon, and since yesterday I've been having various twinging pains and gastrointestinal symptoms. I felt so weak and woozy that I went home from work early yesterday, and took today completely off.

The obvious question--and one I've been asked a few times already this go-round--is "what's wrong?" Is it a virus? Some sort of new cluster of symptoms? A medication reaction? I'm finding the question irritatingly irrelevant these days.

I do, of course, understand that there's some useful information to be had from locating the source of my current distress. It would be good to know whether I'm contagious, as well as whether I should seek additional medical attention. I'd be better equipped to decide whether I should stay home tomorrow if I knew if this happened to be the 'flu (which tends to respond to additional rest) or just a new manifestation of the fatigue (which, alas, does not). I realize these are all important decisions I should make in some sort of informed way. I just can't bring myself to care.

The problem, I think, is that finding the answer doesn't really have any bearing on projecting my future level of health. It's not as if I feel healthy on a regular basis; I see my future health as a wavery line, the undulations of which are largely out of my control, whether or not these particular symptoms represent an acute illness. I'm uncomfortably aware that this sounds like a defeatist attitude under the current circumstances--and perhaps it is--but accepting the unpredictability of my symptoms has also been a major factor in achieving some level of calm as I muddle through my life.

I've been trying very hard not to let dealing with chronic illness make me bitter. Tonight I'm not doing so well with that, but I'm neither depressed nor unrealistically hopeful--and I'm about to head back to bed and get some more extra sleep, which is a good thing either way.

Tuesday, July 17, 2007


I've had a hard time thinking of myself as lucky over the past few years. Sometimes, though, I run across something that reminds me just how fortunate I am. Today it was an article about CFIDS in the New York Times that begins with this doleful paragraph:
For decades, people suffering from chronic fatigue syndrome have struggled to convince doctors, employers, friends and even family members that they were not imagining their debilitating symptoms. Skeptics called the illness “yuppie flu” and “shirker syndrome.”

I've run into precisely one skeptic in my bout with this, a resident I saw in an urgent care clinic. My doctors, employers, friends, and family have seemed convinced that the illness is real from the beginning.

I'm also lucky that this supportive group has stuck it out. My ability to maintain friendships has definitely diminished; I am frequently too tired to talk or write, my response time to e-mails and phone messages (never good) has become embarrassingly long, and if you do track me down quite often all I do is drone on about how hard my life is--but not one person in my life has yet put into action this advice (from a great page with a terrible name on the cfids.org website):
If you have doubts about your ability to continue your friendship, examine the reasons for this: Fear of contagion? Anger about postponed plans? Tired of hearing about complaints and symptoms? You may be able to solve these problems together and continue the friendship with mutually agreed-upon changes.

If you are unable to continue your relationship, express this in a straightforward, yet caring manner, rather than simply disappearing. Let the person know that he or she is not the problem; the illness is.

I couldn't do this alone. How lucky I am that I don't have to.

Wednesday, May 23, 2007


1. strictly, The state of longing for, desiring, craving; appetite, passion. But also used as = APPETENCE. Const. of, for, after.
2. Instinctive inclination or propensity.
3. Of things inanimate: Natural tendency, affinity.
4. Metaph. Suggested term including both desire and volition, as distinguished from cognition and feeling.

--from the Oxford English Dictionary (online edition)

Here is a place of disaffection
Time before and time after
In a dim light: neither daylight
Investing form with lucid stillness
Turning shadow into transient beauty
With slow rotation suggesting permanence
Nor darkness to purify the soul
Emptying the sensual with deprivation
Cleansing affection from the temporal.
Neither plenitude nor vacancy. Only a flicker
Over the strained time-ridden faces
Distracted from distraction by distraction
Filled with fancies and empty of meaning
Tumid apathy with no concentration
Men and bits of paper, whirled by the cold wind
That blows before and after time,
Wind in and out of unwholesome lungs
Time before and time after.
Eructation of unhealthy souls
Into the faded air, the torpid
Driven on the wind that sweeps the gloomy hills of London,
Hampstead and Clerkenwell, Campden and Putney,
Highgate, Primrose and Ludgate. Not here
Not here the darkness, in this twittering world.

Descend lower, descend only
Into the world of perpetual solitude,
World not world, but that which is not world,
Internal darkness, deprivation
And destitution of all property,
Desiccation of the world of sense,
Evacuation of the world of fancy,
Inoperancy of the world of spirit;
This is the one way, and the other
Is the same, not in movement
But abstention from movement; while the world moves
In appetency, on its metalled ways
Of time past and time future.

--from T. S. Eliot's "Burnt Norton"

Oh, dear--a quotation from T. S. Eliot and a definition from the OED? I'm afraid this post might sink under the weight of its own pretensions before it's even begun.

I was tempted to write this without quoting the poem, but for all his over-writing and high-falutin' allusions Eliot captures some of what I've been thinking about lately perfectly. I've quoted this particular passage because it describes better than I could myself the two modes in which I find myself stuck these days: the "tumid apathy with no concentration" in the "twittering world," where I can't seem to manage to string two coherent thoughts together; and the "world of perpetual solitude," where I'm stuck in my own head, incommunicado.

It's not that I lack desire--far from it--or drive. I suspect all this would be easier if I were truly apathetic, and could just curl up in the twilight that is my poor impaired brain. But I'm assailed (an Eliot-worthy word!) by visions I don't have the energy or focus to realize. I can't even describe them. So many things flit through my head that I can't corral them into any sort of coherency.

It's not permanent, I know that; when my energy comes back, so will my brain, more or less. And somewhere, somewhere there must be a balance, a way to reconcile the twittering and the stillness and actually do something useful.