Jaded

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.

Lucky

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.

Appetency

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.

Constant Grieving

This is the hard part of chronic illness: going through the same damn issues over and over. The physical ones are bad, but the mental ones are worse; you talk them through, maybe you work them out, if you’re lucky you get a bit of temporary solace, but ultimately nothing changes. Sooner or later, they come around again.

I keep thinking I’ve become better at dealing with my fatigue, and in terms of the practicalities and logistics, I suppose I have. I’m better at avoiding the things that trigger a collapse, and overall I’ve recovered enough to maintain a decent life with a lost weekend or bad week here and there. I'm able to plan for a future that looks far less scary than it did a year ago. Generally, I feel just as lucky as I actually am.

But in terms of the emotional fallout, I don’t think I’ve made much progress at all. The restrictions and the unexpected setbacks and the drudgery of not having enough energy are still emotional water torture. And, after two years, I’m as thoroughly bored with it as I know everyone else is. I don’t want to jump through these same hoops again, thank you very much; if I have to suffer, I want it to be new and interesting, with revelations and insights and maybe, just maybe, some resolution. I want it to be something I can tell people about without watching their eyes glaze over.

(Yep. Just call me Pandora. Of course that's not really what I want; I'll take an illness that's familiar and mostly manageable over some horrible new disease any day of the week, even if on some of those days it's not much fun.)

Self-Help

And there were always choices to make. Every day, every hour, offered the opportunity to make a decision, a decision which determined whether you would or would not submit to those powers which threatened to rob you of your very self, your inner freedom; which determined whether or not you would become the plaything of circumstance...

***

What was really needed was a fundamental change in our attitude toward life. We had to learn...that it did not really matter what we expected from life, but rather what life expected from us. We needed to stop asking about the meaning of life, and instead to think of ourselves as those who were being questioned by life--daily and hourly.

***

No situation repeats itself, and each situation calls for a different response. Sometimes the situation in which a man finds himself may require him to shape his own fate by action. At other times, it is more advantageous for him to make use of an opportunity for contemplation and to realize assets in this way. Sometimes man may be required simply to accept fate, to bear his cross. Every situation is distinguished by its uniqueness, and there is always only one right answer to the problem posed by the situation at hand.

--all from Viktor Frankl's "Experiences in a Concentration Camp" (1945)

A while ago, at the nadir of my fear and distress over being sick, I asked my doctor if she could recommend a book on managing chronic illness. I hadn't hoped for much, just a lead on something with a useful suggestion or two that wasn't too sanctimonious or too silly. I am, however, so incredibly lucky as to have a very smart doctor who understands me: what she recommended was that I read the work of Viennese psychologist and concentration camp survivor Viktor Frankl.

Frankl's Experiences in a Concentration Camp (usually published these days as the first part of Man's Search for Meaning), was exactly what I needed just then. Even though there is, obviously, a huge gap between having a chronic illness and being interned in a concentration camp, Frankl himself conceived of presenting these experiences as a means of helping people in less dramatic situations; as he says in the preface to the edition I have, "I had wanted simply to convey to the reader by way of a concrete example that life holds a potential meaning under any conditions, even the most miserable ones."

I was really taken by Frankl's concept of identifying and answering the question posed by your circumstances, but figuring out the question I was being asked was harder than I expected. Frankl makes the point that suffering, in and of itself, can be a question to be answered. Somehow, though, that didn't seem right for me. Similarly, the first hundred or two questions I came up with were variants on "How can I regain a reasonable level of health?"--and although they certainly spoke to the situation in which I found myself, they were hardly a satisfying replacement for "What can I do to save the world?"

Finally, it hit me. The question I'm being asked right now, in its simplest form, is "How should I spend my energy?" I've spent a lifetime doing things with energy I didn't actually have--which has given me a wide array of short-term coping skills, but ultimately hasn't allowed me to accomplish the things that are most important to me. I like that it can work as a philosophical question as well as a practical one.

Keeping this question in mind has been both enlightening and useful. I've made a number of uncharacteristically sensible decisions over the past couple of months with a minimum of handwringing. The most dramatic was my decision to leave the all-consuming job that was always just supposed to pay the rent, replacing it with a less-intense (and, sadly, less well-paid) job that will allow me to focus on re-educating myself. I'm proudest, though, of my decision not to overload my schedule when I returned to school this quarter. I kept it to an internet class that fulfills a prerequisite for my program and an ungraded seminar. I did feel a twinge of regret for the lovely classes I was missing out on--but the twinge was followed pretty much immediately by a sigh of relief.

Festina Lente

I have a love-hate relationship with the phrase above (which translates to "hurry, slowly," should your Latin be rusty). I love its elegance: in two words it sums up a state of grace I've rarely experienced. But I hate the smugness of its brevity. Imagine imparting this wisdom from a vantage point of perfect calm to some poor panicked slob running around in circles--or, better yet, being the poor panicked slob yourself--and I think you'll see what I mean.

I'm finding I have the same relationship with a lot of the terminology floating around to describe my symptoms. Take one of my current favorite phrases, post-exertional malaise. I felt a thunk of recognition when I came across it for the first time. I knew exactly what it meant: the weird and frightening disproportionate exhaustion that appeared without warning, the sick feeling as if my chest had gone hollow and metallic that had nothing to do with normal tiredness. How wonderful to be able to describe it so succinctly! How reassuring to find it has a name!

But, happy as I am to have found the phrase, I do have an uneasy relationship with it. Clinical economy has its price. Saying "I'm experiencing post-exertional malaise," or, even, "I find the post-exertional malaise I'm experiencing distressing," tidies up the messy reality and, alas, sounds more than a bit pretentious. The name transforms the experience, making it less frustrating and scary and pervasive than it is in real life; the phrase describes a discrete phenomenon, but when you know that running for the bus or moving a heavy box or even having a bad day at work might trigger a collapse, the fear of it becomes a constant presence.

Overall, though, I think the benefits outweigh the cost. I recognize the malaise more easily now that I have a name for it. When I first came across post-exertional malaise, I identified it as "that problem I have at the gym." Now I've come to realize that it's also a problem in my everyday life. As my energy dropped over the past year, I cut more and more items from my daily agenda, but continued checking them off at the same fast clip. Rushing out the door to work and pushing through until I came home left me too tired to do much else; cooking and cleaning became luxuries. Slowing down is helping a bit with that, although the apartment is still far from clean.

I also borrow a certain confidence from dealing with a named symptom rather than just my own experience of it. Other people have had this; I'm not just overreacting to a bit of tiredness. Other people have had this; it's probably not fatal. Other people have had this; I can learn from their experience. I'm more willing to talk about it and accommodate it, knowing that the definition is there to back me up.

So love-hate it is, and that's just fine. "Post-exertional malaise" may never come trippingly off my tongue--but it's there if I need it.

New Start

If you're joining this story in progress, you may not know that I've been struggling with my health over the past year. I had mono, then a lingering respiratory infection, and then some odd neurological symptoms that may have been a reaction to an antibiotic. Fortunately, I've come through all those illnesses, confirming in the process that I most likely don't have anything life-threatening or horribly degenerative--but, unfortunately, I haven't regained my energy. I wake up tired, and get progressively more so as I go about my day.

I'm starting up this blog again for two reasons. First, I've been terrible at keeping everyone except a handful of people up-to-date. (If you're among the perfectly lovely people I've neglected over the past year, I hope you'll accept my apologies, and know that I miss you. I also hope that you'll get a personal apology sometime soon.) Second, I want to have a place to record what happens as I start to make changes in my life to try to manage my energy more effectively.

I've kept this separate from my other blog so that those who aren't particularly interested in the Perils of Christine don't have to slog through all these details to get to the fascinating reports of presumed break-ins and ant invasions chronicled there. After a long internal debate I've decided to put a link on the other blog that leads here, and to leave the link to my profile (and real name) intact. I do feel a little shy about making this so public, but it would be silly to post anything particularly private on the internet in the first place--and, well, it's hardly a secret that I'm tired.