I just want to sleep

Sleep. I just want to sleep. I realize it's my lot in life as an American to be sleep deprived, but this is beyond reasonable. I suppose.

Here's the thing. When I don't sleep, I get cranky. When I get cranky, I say whatever pops into my head because I'm too tired to put in the effort to filter the appropriate from the offensive, but especially the gray areas in between that really require self-monitoring.

Sleep. It's a good thing.

At least I'm not psychotic.

Random thoughts

If I don't get some sleep soon, I am going to crack and have some sort of mental break. Most likely, I will achieve previously unwitnessed levels of extreme bitchiness.

I would rather be anorexic than fat. Anorexic people get sympathy and are approached with concern. Fat people get ridiculed. And anorexics get to be thin. As a society, we value discipline and self-control, and aren't those really the core issues of body image?

The Spaghetti Monster is getting serious discussion in theological circles. If that doesn't rock, I don't know what does.

I have to go to the worst public housing center in the city today. I can only believe that with my extreme bitch face on, nobody is going to fuck with me.

I've been faithful to my exercise research study workout schedule and dietary guidelines. My reward? I gained a pound. I hate my body.

A study released today reveals that one in six U.S. drivers would fail their driver's test if they took it today. Only one in six? I think GMAC needs to check its math.

Witness

I dreamed of my death and it was murder. It wasn’t a dream while sleeping, but a vision, striking in its clarity, that appeared in my field of sight, external and internal simultaneously. My eyes were filled with the scene.

I was there on the east side of the city, early evening, when the night is dark but not so dense as to feel as though it had depth. My body was face up on the sidewalk, just to the edge of the streetlight’s focus. Right arm above my head, left arm slightly twisted back, resting against the dirty sidewalk. Knees bent, pointing to the right, one shoe on, one slipped off as if it had been left behind when I fell, leaving five of my toes exposed to the cold night coming in.

My purse was still slung over my shoulder and across my chest, now standing up against my side. By my upper wrist, a thin trickle of blood branched off from the large pool of glossy deep darkness spreading out from the back of my head.

Shot. I had been shot while walking to my car in this gritty neighborhood where I came to do in-home visits with women from some of the most violent places on earth. They feel safe here. Everything is relative.

The shooter was long gone, having missed his intended target, who also had fled the street.

I saw my body in the black cotton T-shirt dress and silk tiger-print scarf I wore to work. Where was my book bag? I couldn’t see it, even though I saw the whole scene from directly above—a bird’s-eye view in reverse, a spiral going slowly up instead of spinning down into a clearer focus. I saw myself from 20 feet up, and then farther, and then looked away for just the tiniest fraction of a second and the scene was gone.

It was so real, but I was not unnerved by the scene that had billowed and spread out to take over my field of vision. I was dead by someone else’s hand, but I felt no pain, no fear. I was gone.

It's happening again

It's showtime. It's time to call on those coping resources, May. You need to sort out the real and the fictional reactions in your brain, the rational and the chemically sparked. Take a deep breath, stay aware. Don't get pulled into the dark side of bipolar management. You aren't doing anything wrong, you can only control so much of what is coming, but...you can be aware, bite your tongue, and above all else, you must rely on the data. Are you reacting to what is really happening? Are threats real or perceived? Look at the data, May. Don't let yourself react before you have monitored your own status.

Lisa said this would happen. She's been popping red flag warnings around my psyche for weeks, mostly because I am more than willing to overlook the obvious in situations like this--especially if it means slowing down. Slowing down means I'm sick. Slowing down means I can't keep up. Slowing down means I'm losing and nobody else is going to lag behind to nudge me along. I can't cut back, slow down, nurture myself blah, blah, blah. It only reminds me that I am so terribly defective and afflicted with something that is incomprehensible to anyone who doesn't have it.

Anxiety. I need to analyze the anxiety. The anxiety is coming from inside. Why am I anxious? Biological: Not enough down time, perceived inability to excel (I have to excel so that if I slip back, I'm still where most people are at "normal"), lack of sleep, time change, daylight slipping off to spend the winter south of the Equator, absorbing the anxiety of others, feeling totally overwhelmed by work with no end in sight and no option to delegate. Fear of failure. Fear of making a mistake. Fear of my mood tanking or of misinterpreting the words, actions, or even demeanor of those around me. I'm a little bit paranoid, and that's often the start of melting down and not keeping my misfiring neurons together. Crap. Paranoia. It's a big red flag flapping right in my face.

I hate it when I can't keep up. I feel like I can't keep up because it's hard to think straight when you don't sleep very much. I am not allowed to fail or fall behind at work. I'm just not, and no matter what my boss says, she lies. She says one thing and demands another. She cuts me no slack. Her definition of being accommodating is that I have a job in spite of having times when I can't be super dooper over-achieving May. I should have come in as a far more mediocre performer and then I wouldn't be held to such a high standard. I am not allowed to fall behind. I'm being judged all the time, not just by those I work with, but by the larger community that works with my program. Back off, people. It's stressing me out.

How the brain goes awry: A coworker says of our shared space, "I need more storage. Can we work together to figure out a way to make more room so both of us have a place for things?" What I heard: "You're an inconsiderate space hog who has taken all of the storage, leaving no place for my things. I work in this space, but you've claimed every corner for yourself. Something of mine got stolen because it was left out in plain view and that's your fault because I had no place to put my things away." Deeper issue: I hate sharing my work space and I do so with resentment, but I am still capable of playing nice. Nagging thought: I was there first. By a lot.

I know I'm falling behind rapidly at work. This is not BP-related, it's just work volume and my occasional incompetence. I am one person doing far more work than the position requires as it is outlined on paper. I don't live on paper and neither does my job. When my brain gets full, it...just...stops...working. "Where is that report, May? Laura needed it yesterday." Heard: "You screw-up slacker. How dare you take a sick day when you had work due? Laura is freaking out and it's all your fault, you irresponsible fuck up. You only care about yourself, and this is one more example of that. I come in when I have a fever. What makes you so special that staying home sick is appropriate?? It's only appropriate for other people, and maybe for me when I need it. Take a sick day when your work is finished." That, ladies and gentlemen, is the bipolar brain in its finest moment, rerouting input and letting the amygdala direct the neuronal traffic into all of the wrong transmitters. Can I stop it from happening? Is it just that I should take a long, deep breath of "rational?"If I could, would I down $600 worth of pharmaceuticals every month? The most I can do is step back, analyze, and compare my reactions to the data before me. Where paranoia surfaces, big, big trouble is usually coming.

The smallest mention of my shortcomings or tiniest misstep resonates in my brain like a frontal attack. It is a horrible, frightening feeling because although I can analyze the data, I can't avoid the initial reaction. These interpretations spark an inner dialogue that grows and swells and becomes a deafening crush of rapid thoughts that won't quiet themselves, leaving my brain unavailable to tend to the other tasks of living and functioning in the real world. How the FUCK do people like my boss conclude that this nonsense is even remotely voluntary, a conscious choice? No. The conscious part lays in trying to mitigate whatever behavior surfaces in an inappropriate way. Nobody sees this. They only see the inappropriate reaction without consideration for why it's there in the first place. They know if they don't like my mood or what I say or do, well, it is obviously meant as an insult directed toward them. They don't realize that they are so insignificant to me when I'm cycling, I couldn't work up the intellectual effort to consciously insult anyone. People are so self-centered. I am struggling to keep my brain straight, but they only feel indignance when I don't fit the parameters of their expectations.

I feel short of breath. Is it my asthma? Is it my anxiety? Is it that I'm subconsciously trying to stop myself from breathing in another thought, another piece of data that I have process before I can feel safe in producing a reaction?

I will rely on the data. I will compare my thoughts and reactions to the external events that trigger them. I will step carefully. I will pray to the cosmic forces to help me keep my thoughts to myslef, those snakes and lizards that slide so easily past my lips to shock those around me. I will watch my mouth. Better yet, I think I'll just keep my mouth shut for awhile while I try to convince myself that nobody is plotting against me.

Let it pass. Let it pass. Let is pass. Please, let it just pass.

Life should not require this much thought. Self-monitoring is perhaps the most exhausting mental exercise of all.

Talk to me

It's 1:30 in the morning, and I have nothing else to do, so I changed the comments setting on this blog. You no longer need a gmail account to post comments, so it's much easier to use this Blogger feature. Wahoo. How exciting is that?

Little secrets

Every time I have a medication change, if I still have refills on the discontinued medication, I keep getting them filled until they run out. I've been doing this for several years. I have a huge collection of cyclics, benzos, sleeping pills, lithium, and painkillers, among others.

I take comfort in having this copious stash in my home, available to me at any time.

You never know.

Imagining the Perfect Life

Last year, probably in December, I was hunkered down for what turned out to be the most horrendous winter I can recall. A friend of mine helped provide mental stimulation by exchanging some very interesting emails with challenging questions for me to ponder. Cleaning out the hard drive of my computer is providing me the opportunity to revisit a lot of critical moments from the past few years. I re-read this conversation with great interest--mostly because I sounded so lucid when I absolutely wasn't.

For some reason I'm slightly dizzy this morning.
I’ve been like that for days. It’s getting old.

Nothing coffee won't fix - I'm sitting in my office drinking my one cup a day!
Hey, that’s my daily dose, too. I drink Folgers Simply Smooth. For years I’ve wanted someone to sell a low-acid coffee, and Folgers finally did. Hallelujah. Before that I drank something called Rocamojo with coffee added in.

The BP dependence on regular sleep patterns - it sucks.
Ah, insomnia. How I wish it would leave me and take those goddam migraines with it. How BP am I?

OK - so I was thinking of the game 20 questions. For the sake of efficiency, I narrowed it down to 5! You’re so efficient (or is it really that I’m not that interesting that you need 20 questions? Kidding.)

1.) If you could design 'the perfect life' what would it look like? Where would you live, how would you feel, look, act, who would you be with, what would you be doing, etc. (You can summarize - don't want to force you to write an essay when your fingertips are frozen from the cold).

Using my fingertips keeps them warm.

I need to live closer to water. I would like to live someplace warm but not hot, and not too far from the ocean. No winter. I’m not sure where that is. I prefer medium-sized towns to very small ones or to large cities.

The perfect life. Hmmm. Well, first of all, I would be taller. Even a few inches would suffice. I would be a hell of a lot thinner, preferably with a toned body representative of the sporty woman I used to be. Even when I was really active, I was still squishy. I would have better skin and no need for glasses. I’ve never been particularly pretty. I don’t need to be gorgeous, but pretty would be a welcome change.

In my perfect life, I would never feel awkward around people, and I would immediately put people at ease. My energy level would always be great. I’d be less cynical. I would not have big mood swings, but more than that, I would never be paranoid, irritable, agitated to the point of distraction, or chronically anxious. How can I ever achieve inner calm when inside I’m always squirming? I would never offend anyone (tact filter issue when things are bad). I would do as much for my husband as he does for me. I wouldn’t loathe myself.

I would be as funny as I am when I’m freshly hypomanic (and that’s pretty damn funny); I would be charming and a very good listener. I would not feel inferior all the time. I would have sex a lot more.

I would still choose to be with my husband. I would choose my friends much more carefully and surround myself with compassionate, intelligent, down-to-earth people who are open-minded, intuitive, and understanding, but who have enough time to spend being friends. Smokers need not apply. Nobody arrogant, grandiose, or negative would be in my group of friends.

I would feel well enough to ride my bike every day, and I would have the time to do it. I wouldn’t have to ride in an urban setting. I would be a much better skier. I wouldn’t have to work, but I would still work anyway, but without the financial pressure. In my perfect life, I would have no debt and no moronic behaviors that would get me into financial misery. I don’t need to be rich, but I detest struggling. In a perfect life, I would have a lot of time to do the things that make me happy, including gardening, playing with my dog, taking pictures, reading books, and of course, writing. In a perfect life we would have a housekeeper.

I would be able to travel, I would have the means to do it, and I would travel often. I want to see all of the good places, but I would still like to spend time working for an international aid organization. Maybe I could work for the UN helping refugees somewhere. Of course in a perfect world, there would be no refugees.

I would have a tattoo, a very intriguing tattoo.

2.) What scares you most about life as you know it or experience it in the present? What is the most unsatisfactory thing about life as you know it or experience it in the present? What is the best thing about life as you know it or experience it in the present?

What scares me most is the thought of losing my husband, my job, my house, and the few real friends I still have (including you). Life as I know it is complicated and sometimes very hard for me to navigate. I’m afraid my BP will cause my moods and behavior to deteriorate to a point where I can’t really be helped or where I’m left totally alone. I’m scared every day that I won’t live up to the world’s expectations of me and I will feel too ashamed to live. I worry that the way I feel now is as good as it’s going to get no matter how much effort I put into my health.

The things I like least about life as I know it are my financial obligations and limitations. This colors every other aspect of my life, and I hate being so preoccupied with money. I really, really hate being broke. I’m not good at it, and it makes me live with an unrelenting undercurrent of fear and anxiety. I would have more leeway if I hadn’t cut up my credit cards, but I felt I was doing the responsible thing. Maybe I was, but it made my life a lot harder, instantly.

The best thing about life at this time is that I get to make a difference in people’s lives. I know that if I were to quit today, someone else would do this work and every bit as well, but I like knowing that the fact that I cared may have made someone else’s life easier. The other good things are that I have you to converse with and spend time with, and that has made a huge difference in improving my outlook and in mitigating my sense of anonymity in this world. Being with my husband and talking with you are the highlights of my day, every day.


3.) Are you sometimes afraid that if we ever meet in person I might not like you as much as I do in the 'virtual' realm?

You have no idea. At least you have pictures so you’ll never say, “I pictured you as a tall brunette.” I’ve actually heard that a half-dozen times, from people who only “knew me” by phone. Seriously, though, I worry about that a lot. I’ve always believed I was much better on paper than in real life. I worry you’ll think I’m just a total dork.

4.) What preoccupies your thinking? I know currently it is probably the weather, but in general, what preoccupies your thoughts?

Money, money, money. The weather bothers me a lot, but I don’t brood about it. Money, on the other hand, is, as I said before, a source of unrelenting anxiety. The other things that preoccupy me are self-monitoring for saying stupid things, self-monitoring for signs of BP flare ups, and the constant, running dialogue I have going on about all things work-related.


5.) Do you ever think you will feel 'right,' whatever that means? What does that mean anyway?
I’m not sure what right is. I hope that feeling right means I’ll have more self-confidence, more optimism, a more peaceful feeling inside, and freedom from anxiety and self-doubt. It would mean having almost total control over where my moods go, and my emotions would never sneak up on me and smack me in the head. I’d remain calm in the face of criticism, and I would never think irrationally.

No, I don’t think achieving any of that is ever going to happen, but I keep taking meds and going to therapy in a total leap of faith that may or may not leave me sprawled out and battered anyway when and if I fall.

Daylight Savings

I wish I could have saved up some daylight. I just couldn't figure out how. I'm so tired. I want to sleep. My body wants restorative sleep.

Daylight Savings Time is finished, but without having managed to save any daylight, I have to get used to the dark. The dreaded, non-10,000 luxe dark.

Here I am, needing to go to bed, but I'm writing, easing up some space in my full brain, instead of lying in bed waiting for sleep to come. All in all, this scenario would be called poor sleep hygiene. Even with the "extra" hour, I'm not able to go to bed at a reasonable hour. 2:30 last night. Awake at 5:30 this morning.

I could use a massage or something, but I hate to be touched. That's another story for another day.

Stop saying that

This has been bothering me for awhile now, but I could never quite articulate why. I think I can finally put it into words. Ever since it first became obvious that I was sick and getting sicker, I expressed deep dismay and frustration about it.

I get absolutely despondent because I want to be normal--I want to function among people without having to watch every word coming out of my mouth, or every blip in my mood, or any potential misinterpretation of the things happening around me. I hate it when I try to think but can't latch onto one thought, or when I feel so anxious I can barely stand to be outside of my house. More than anything, I hate it when my brain just stops processing everyday information and I can't work, write, speak, or read without tremendous, not-always-successful effort. Most people do not live with these issues, nor do they have to self-monitor so closely. They do not take six expensive medications every day. This is a very real and exhausting part of my daily life.

I have tried many times to explain to the people who know me just how frustrated and sad I can get because of the things my brain does or doesn't do on a regular basis. I always think that if they could understand how the disorder feels from my internal perspective, perhaps they'll see why I feel so overwhelmed with sadness and frustration. They'll see why I say I want a new brain. They'll see that I need support and empathy.

Instead, the answer I usually get is: "There's nothing wrong with you. You're fine. You do better than most people who don't even have a disorder. This doesn't affect you as much as you think it does."

And they have this insight based on...what? I suppose that part of the perception disconnect lays in the fact that I am, for lack of a better term, high functioning. I go to work, I accomplish a lot, I'm usually articulate, and I do a good job of masking my own reality. But it is still my reality. So...what? People don't believe me? I cringe every time I hear it. "There's nothing wrong with you. You're fine." Great. Have they forgotten so quickly what it was like before medication and therapy? Are they trying to make me feel my desperation and frustration are unjustified?

It doesn't make me feel better. Whenever someone says there's nothing wrong with me, I actually feel...

• they are being dismissive and insensitive;
• I have no credibility
• this is meant to avoid any further discussion of my woes
• they don't consider my disorder to be a legitimate health problem or even a problem at all

It's just so goddam condescending. I don't find this "reassurance" comforting at all and I wish everyone would stop saying it.

Perhaps I want something like this..."I'm really sorry you feel that way, May. It must be frustrating to feel those deficits. For what it's worth, you do such a good job of persevering and working past it, that really, nobody except you can even tell something's going on."

Dream on.

1:20 a.m.

I am awake. Drowsy, but not enough to sleep. I am avoiding going to bed, but I'm not sure why. Intensely strange and disquieting dreams. I'm so sad when I wake up. Two cats, a dog, and a husband. Exercise in futility.

I have a very busy day tomorrow, so I'll just take a deep breath and try. I desperately need sleep. Why can't I sleep? My brain fights me on everything. Can't it cooperate for just this one thing?

Ow! Ow Ow!

Have I mentioned the exercise-for-slothful-fat-people study I'm enrolled in? Yesterday was my first full session working with the trainer and getting acquainted with the apparatus. It was so easy, so ridiculously effortless, I refused to believe this was doing any good. Exercise? How could it be possible if I was doing it and yet I wasn't miserable?

HA!
Ow. I can't be adamant. It hurts. My gut hurts, my abs hurt, my quads are not pleased. The only thing I dislike more than the tedious nature of exercise is...the pain. It's the main reason I stopped exercising. Boredom is one thing, but discomfort, well, I just can't stand it. Discomfort with sweat--no. No. No. No.

The trainer said I might feel this way today, but I was optimistic. That'll teach me. This reminds me of something that happened in 1994. I belonged to a gym but hated working out in the cardio and weight rooms. I thought, "surely, water aerobics is the way to go. Lots of old ladies and fragile people with blown out knees. How hard can it be?"

I got to the pool and put on the chunky, blue floatation belt. I took off my glasses and jumped in the water. And...floated like one of those red and white bobbers that go on a fishing line. My ass is big enough to be its own rather effective flotation device, so the flotation belt just threw me into some new anti-gravity state that made me have to fight tipping face-first into the water.

It took me a minute to realize the instructor wouldn't actually be in the water. This was distressing because without my glasses, she was nothing more than a chirpy blur on the pool deck. The indoor pool area was a sonic nightmare of echoes and swallowed voices that bounced around the walls but never regathered into coagulated words. In short, I couldn't see anything and I couldn't hear worth shit.

I did my best and paddled, kicked, arm circled, and underwater walked my way through the class. I thought it was a ridiculous excuse for a workout. Until the next day. The alarm went off, and I threw back the covers to get out of bed. My legs wouldn't move. Well, they would, but only with great effort that sent excrutiating pain through my limbs. Every part of my body hurt. I eventually sucked up the ab pain and made my way to the shower.

I moved like a robot. I moved stiffly as if I had no joints, like a Barbie, but short and without good boobs. The old people, with the help of perky-the-instructor, had kicked my ass.

You'd think I would have learned that it's the seemingly innocuous exercise that bares its torturing teeth the next day.

OK, then.Only another eight weeks of using the wood and steel torture device. Joseph Pilates was obviously a sadist with a sense of humor.

Let's revisit something painful!

I've still been straightening up my computer files and in the process, revisiting the recent past. Everything I've written since 2003 becomes a litmus test to gauge my current state. I wrote this list in February of this year. I can honestly say that although I feel and cope better in many ways, the ideas outlined here really are core beliefs. In my heart, I still believe 90% of this; I just deal with it better, hide it more convincingly, and don't focus much on the debate about living or dying anymore.

Core beliefs * February 13, 2007

· The people who know me just cannot, will not, are incapable of understanding my problem or making the critical distinction between a willful, controllable emotional issue and a physical, organic illness that happens to manifest through behavior, speech, and perception.

· I will always be judged—and harshly—for things I cannot control.

· I will always be held accountable for things I said but didn’t actually think or believe.

· My health problem/disorder will always be met with skepticism and disdain.

· I try and try to educate, but nobody gets it. Except Joanna, but she’s a doctor and she’s deeply compassionate and tolerant. She knows to put the behavior into its correct context instead of being insulted by it.

· I feel so bad, I am toxic to myself.

· I believe—know—it’s not my fault. I try to fix myself, I do everything I’m supposed to, but I am just really beyond sad.

· No matter what I do, I just make people mad and probably always will since my condition is permanent. I am held responsible for feelings and behavior that control me. I believe it is easier for others to be mad at me rather than acknowledge that none of us can control or fix my problem. Fuck ‘em.

· I am held to an impossible standard of behavior and wellness.

· Sonja does not judge PeggyJo the way she does me. I do not believe she scolds or berates PeggyJo when her behavior and words are irresponsible, erratic or unkind. Same dx, different tolerance.

· Everyone expects me to overcome what very few people ever do; this standard is unfair.

· People only like a winner. Performing as expected is good. Having a serious, complex problem is just plain unacceptable. OK, I get it.

· There is no value in a life lived with so much pain, especially when compassion and understanding are so egregiously absent.

· Nobody cares about me, only that I get back to meeting their expectations.

· I am unlovable.

· I cannot live this way. I will not survive it. I know this unequivocally.

· This world and the people in it just absolutely suck, especially the people I always thought would comfort me if I needed it. Fuck ‘em all.

· I believe I will always feel abandoned and alone; the wound is raw and unhealable.

· If I can just act normal and meet expectations, I will not be judged. It’s so hard. Too hard.

· I do not want to live this way.

· I no longer want to live.

· Suicide is a civil right. It is a human right. It is inalienable. Period.

· Only death can free me from the pain, embarrassment, and disappointment I endure every goddam day. There is not enough therapy in the world.

· I am not capable of happiness. Not anymore.

· I am worthless.

· I can’t do anything right. I just can’t do anything right. Somebody is always mad at me for something--usually for being myself and not the self they're comfortable with. I wish they wouldn't get so mad.

· Everything is hard.

· I’m useless if I’m sick. Useless. I see it in the faces and attitudes of everyone around me.

· My brain is defective. I am defective.

· My future is hopeless. All I can do is pay my debts and manage the BP for the duration. It’s responsible, but is it actually worth living for?

· Nobody cares about me; they only care about what I can do for them. In the absence of achievement and service, I become irrelevant to those who would otherwise praise me. If I can’t “do,” then I do not matter. Worthless.

· No one’s life will change if I’m not here—not beyond the most superficial consequences. Whose life will be altered if I’m not here? Nobody’s.

· I can’t feel any connection to people anymore, and frankly, I don’t want to. People are unreliable and disappointing.

· My life has no value, not even to me. Especially not to me.

· I am physically repulsive. Homely, fat, and clumsy.

· I’m a big, fat blob of “Why Bother?”