An Indulgent Confession

Hello, Gentle Readers. (I don't know why I feel more Jane Austen-ish in the fall, but there you have it. Gentle Readers you shall be while the temperatures are crisp and the leaves brilliant.)

If only my mind and body were as crisp and brilliant. But alas, it is not so.

Depression has, lo these many years, been my relentless, silent companion. Sometimes retreating, sometimes well behind my shoulder so only its breath can be felt, sometimes creeping inexorably against me like shadows calling me home, sometimes erupting suddenly out of nowhere like one of the horsemen of the apocalypse.

And that is melodrama if ever I've written melodrama. Truth, but an uncomfortable truth that makes my polite self want to instantly add, "But it's not that bad! I'm fine! I just need a nap. How are you?" Which is why I don't write about it much. Not because it doesn't affect my life, not because I'm ashamed, but because it's impossible to talk or write about without sounding impossibly self-centered.

But it is, at least, a familiar companion. If I have a fractured mind, at least I know how to accommodate it and seize upon the gifts it can bring along with its terrors.

Now a new stalker has come to visit. Or possibly to stay, although that thought is so disheartening as to be nearly paralyzing.

Chronic autoimmune illness. Chronic fatigue syndrome, fibromyalgia, lupus . . . all possibilities. CFS is the most likely at the moment. But as I've learned through research, the average length of time for an accurate diagnoses of an autoimmune illness is 4 years. As I'm (clinically) less than a year in, it could change over the next years.

I'm not entirely unfamiliar with autoimmune diseases. Six months after Matt's birth, I was diagnosed hypothyroid. For twenty years now I have taken thyroid replacement hormone since my body no longer makes enough on its own. The why is something of a mystery, as it is in most autoimmune diseases. Something--virus, epigenetic switch, environmental toxins, stress, a combination of these and probably things we haven't thought about yet--cause the body to turn on itself. Which is only slightly less terrifying than the mind turning on itself.

I've also had three awful bouts with mono, another poorly-understood illness that may be a flare of something underlying. The last time was in 2007. I was diagnosed in December 2006. It's not exaggeration to say I remember almost nothing of January 2007. I was so sick that in June, six months after my initial diagnosis, my virus load was EXACTLY THE SAME as it had been in December. It was a solid year before I began to feel something approaching normal. (Just in time for Jake to be diagnosed with cancer, but that's another story.)

This is what my life has been since last Christmas:

1. I sleep. A lot. So much that it's embarrassing to give numbers. (So maybe I am a little ashamed. I mean, sleeping thirteen or fourteen hours at a time is not something anyone is proud of unless they're the parent of a toddler.)

2. And then I wake up for my, oh, eight or nine hours of consciousness and spend every minute knowing that if I laid back down I could fall straight asleep again.

3. Until, of course, it's nighttime. And then I'm wide awake. Which is something of a character trait for me, and not one that's been too troublesome. I mean, much of Boleyn King and Boleyn Deceit were written after 10:00 at night when my family was settled down. But in those days, I could still rise by 10:00 a.m. (after my early morning half-awake efforts to get kids sent to school) and have a day.

4. Days that used to involve actually leaving my house. Or, heck, LEAVING MY BED. These days I measure my good days by whether I sit in the armchair in my bedroom rather than simply sitting up in bed. (Wow, this is getting really confessional really fast. Are you losing respect for me yet?)

5. Now my days are carefully calibrated to involve one thing, or at most two. I try to make those two things exercise and writing. For exercise, read: twenty minutes light (very light) cardio on a bike and, if I'm feeling very energetic, fifteen minutes of yoga. Often, it's just one of those in a day. And then writing because, well, because I have a contract and books have to be written and I actually like that part of my day so that's what I do.

6. But you can see that doesn't leave much for anything else. Like friends. Or activities. Or even my family. It's something of a conundrum.

I tried explaining it to my husband this way: Imagine every human being is given 10 points every single day. A healthy person on a good day uses 1 point for the business of being alive and basics like brushing your teeth and showering. For the last year, a good day for me uses up 4 points for the same. And the bad days? All 10 points are gone before I've so much as emailed my agent or answered interview questions or talked on the phone. I can borrow points for a short time, like going to Bouchercon two weeks ago. Adrenaline can buoy me for four or five days at a time. But then I pay. With interest.

The most insidious aspect of chronic illness is shared with depression: the inability to remember life ever having been different. When I was at my most depressed, I not only couldn't imagine feeling differently, but I didn't think I was substantially more impaired than anyone around me. I distinctly remember, within two days of beginning my first anti-depressant, thinking with awe, "So this is what it feels like to be human. I thought everyone felt like I did and they just coped better than me."

That's pretty much where I am physically at this point. If I sit down and think about it, or talk with friends who have known me for years, I can logically remember that I haven't always been this lazy by nature. Somewhat lazy, sure, but I routinely used to work out for 45 minutes at a time and do it again the next day without having to go to bed for a week in between. Though I have never been a morning person, I have spent the majority of my adult life up and about and even dressed well before noon. I used to be able to write AND be with my friends AND hang out with my husband AND take my kids somewhere all in the same week.

And of course, depression is a handy little tag-along to chronic illness and mine is no different. Long years of feeling that I should be stronger than this, I should be able to control my mind and body, I should be better or kinder or lose myself in others because I'm just way too focused on myself and so that's why I don't feel well . . . It's kind of pathetic. Because I know women with chronic illness. And women with depression. And not once in all my dealings with them have I ever considered anything other than compassion and a wish to ease their burdens. But for myself? Well, women have a long evolutionary history of being harder on ourselves than on anyone else.

Is it in my head? At this point, who cares? I just want it to get better. And that's what is scary about chronic autoimmune disease. It might get better, but it doesn't go away. It will flare, and then it will subside. But the threat of a flare never goes away, just as the threat of depression to drag me down never goes away. I can live with it, I can accommodate it, but I can't will myself to get better.

Why am I writing about this now? Partly because it's easier to post one explanation that my friends and family can read so I don't have to talk about it dozens of times. Believe me, I am so sick of my own body at this point that even I don't want to listen to me anymore :)

But also because emotions and stresses are a major influence on chronic illness. Maybe if I talk about my fears, I will ease their ability to harm me. That's the theory, anyway. So here's my biggest fear:

One of the symptoms of many chronic autoimmune diseases is muscle aches and joint pain. Until a couple months ago, I didn't have either. But in the last six weeks or so, my muscles have been aching. And this week my shoulder joints have leapt into the fray. Not major, not requiring pain meds, but scary. Because joint pain is a hallmark symptom for a particularly nasty autoimmune disease--rheumatoid arthritis.

In 2002, I met my birthmother, Sandra Lindsay, who had placed me for adoption  33 years before. When we met, she had been crippled from RA for five years. In the four and half years i knew her, I saw her out of bed twice and never saw her walk. She died in September 2006 from rheumatoid lung disease, a terminal complication of RA. She was sixty-four years old.

I want a lot longer than twenty more years of life. I want much more than a decade confined to bed. Sandy had emotional stressors that went deep and far into her past, many more and much more damaging than any I have had. But she also did not have as many resources for dealing with them. And so, though polite reticence and a deeply innate desire not to trouble anyone are very much my style, I do not want to be poisoned from within. Writing helps, even writing about troublesome, sexy fictional Tudors.

But writing honestly about myself also helps. So this, gentle readers, is for me. Thank you for indulging me, and I promise, I really am okay. I have a family that can absorb a lot and friends who love me for no discernible reason I can see. Who needs more than that?

It's 11:55 p.m. I have at least an hour of wakefulness ahead of me. I think I shall go read, since I have already written nearly a thousand words today. Hopefully all of you are well asleep by now ;)