Promises, promises

(microcopic photo, varicalla zoster virus--The Revenge of My Chidldhood)

I promise this blog will get more interesting once the shingles outbreak is out of my life. It's front and center right now (well, back and center, actually), so it is overriding whatever interesting thoughts would normally bubble up in my brain.

That being said, today's evaluation is...I feel like someone is stabbing me in the back while simultaneously breaking my ribs.

I need to get dramatically better within the next five days or else my trip to Florida is going to be hell. It will probably be hell, anyway, but I need health on my side so I can survive this task of being my mother's post-op nurse for 4 1/2 days. She wears me down under the best of circumstances.

Favorite Mom quote from fall, 2006, when I was severely depressed: "You're taking all these medications but you're more screwed up than ever! Are you trying to get better?"

The cosmos smite us

Almost every day for the last year and a half, I have exchanged email with a friend who is similarly in possession of a differently-wired brain. The brain issues are the commonality that got us talking, but it's our mutual appreciation for each other's thinking that has kept the conversation going. This week, we're talking about working hard and falling down.

Hello, dear.

I think for the next week-and-a-half I'm going to work from home in the afternoons. This is my (probably) lame attempt at scaling back while I recover from shingles. Everything I read says this:

• Shingles is opportunistic. Prolonged stress is a primary trigger.
• Shingles is not only an illness but a symptom of a life out of balance. You push too hard, the body pushes back.
• It is critical to rest and rest a lot while going through a shingles outbreak. The immune system is very stressed at this time. Not resting almost guarantees postherpetic neuralgia.
• Getting this sick is a wakeup call telling me I need to eat better, rest more, work less.

Of course, I always thought this kind of information just didn’t apply to me. Then I thought about it, and I thought about you and us as two people who push the envelope of hard work. Personally, I’m always trying to prove that I am good enough. I always fear that if I slow down, I’ll be seen as unreliable or lazy (or crazy). I’d actually rather work myself into illness than let anyone think I’m not working to potential. Yes, I have always put my work ahead of my health. Isn’t that what we’re supposed to do?

I wonder about us. Why do we work so hard that illness spots opportunity in us? Is this nature’s way of smiting us for shrugging off the concerns expressed by others? People tell me I do too much, I’m pushing too hard, and I’m overextended. I know this, yet I refuse to admit it could have any meaningful consequence. And then…I get shingles, you get pneumonia and then pertussis. Damn. I go to work after a trip and come home with enlarged lymph nodes on the right side of my body. I hate it when I’m wrong about my immunity to health consequences.

I started thinking about this when I looked at an email of funny pictures of men doing moronic things on the job. I thought, “I’m sure they say, ‘nothing’s going to happen. I’ll be fine. Let me just finish this one thing….'” And then we fall off the ladder. The last time I fell this hard, my brain disconnected from rational thought and it became obvious my brain was defective.

Hmmm. I am trying to listen to the wakeup call. I am trying to let my body tell me what it needs. I was surprised how many serious articles said that rest, yoga, deep breathing techniques, Tai Chi, meditation and other similar activities are often prescribed post-shingles. What? I need to meditate? I need to do what New Age crap? Me??

I hate the thought that I’m not Superman. You know, like that Five for Fighting song you used to remind me about. How will I live if I can’t maintain my usual unrealistic high expectations of myself?

Do you feel smacked down by cosmic health forces?

My friend replies...
It is not being able to exclude people from my world that makes me sick. I don't know how else to explain it. If I am doing my own thing, singularly focused and happy just for the moment (and 'happy' is relative as you know), I'm fine and I enjoy life. My immune system goes haywire when I'm forced to deal with the outside world. It is like I take on the energy of the drama. Hard to describe, but I generally have to regroup (and getting pneumonia and pertussis forced me to do this), and decide to focus again on self.

Your body, just like mine, is saying 'enough, enough, enough.' I think our whole physical organism is so delicate and "sensitive," whatever that word means, that we cannot provide enough of a barrier against the harmful effects of the outside world.

My thoughts:
Yes, I agree with this. It's the whole basis of the concept of the Highly Sensitive Person. I know I also take on the feelings of the people around me, including the refugees I work with. I used to have terrible problems with secondary trauma.

Exactly. I think that my other self-esteem and perception issues are just an additional, neurotic layer that stops me from listening to what my body has to say. And, like you, I find that making my world smaller (in terms of people) works better for me. I just had a discussion about this with my Iraqi client; she's very concerned that I am so closed off (she caught onto that very early on--my psuedo-relationships with people), and really frustrated that I won't give her my phone number or drop in to see her when I'm in her building (often). I drew a little box with by hands and explained that this is where I am comfortable, and I prefer to choose when I emerge, but almost nobody is allowed in past a certain layer of security. She said, archly, I was like Sadaam Hussein--he had a similar arrangement at his compound.

I used to be inherently social, but given the option now, I will spend a hell of a lot of time by myself. Yesterday when I worked from home, I was much calmer at the end of the day. It felt good, and yet I was highly productive. When my work hours changed a year and a half ago, the hardest thing for me was that I lost a big chunk of alone time. I used to get home at 3:30 and my husband didn't come home until 5:15. I needed--actually needed--that buffer time to have no human contact at all. I miss that a lot and I think it has had the effect of chipping away at my ability to maintain calm inside of myself. God, I'm so weird.

I think when it comes to making changes, I am just afraid of something...I can't really articulate it. I need to make some big decisions about how I work, the responsibilities I've taken on, and more. In spite of that, I don't want to think at all. I just want to stop feeling like I have cracked ribs and all of that.

My friend, again:
Maybe that's our illness - we are too aware of our world, our minds and our bodies. We analyze and over-analyze and our bodies take the brunt of it. "Enough" they say, "enough - you're stressing me out. How you are choosing to respond to your environment is killing me," our bodies and our minds say - we get sick.

I looked back on my journal from a couple of years ago. All I wanted and wrote about again and again was to be alone and to be left alone, and to stop talking. Unfortunately, my meds haven't cured the compulsive talking issue, but I am getting really good at not actually saying anything.

Sometimes I think I wear my nervous system on the outside.

Quasimodo

I feel like my back is going to split itself apart. Now I have enlarged lymph nodes under my arm and in my groin...all consistently on the right side of my body.

I feel like I'm wearing a bra that is two sizes too small and it's shrinking. Except I'm not wearing a bra at all.

Advil isn't helping, so I've switched to semi-sweet chocolate morsels straight from the bag. They do nothing for the pain, but at least they distract my attention for a while.

Blogging at 37,838 Feet, 453 MPH

Reruns, re-thoughts, rethinking, reminders.

I am going home. I think my liver is going to explode. I am sure that my gall bladder is encouraging this in an attempt to free up some room for itself. My rib cage seems to have squeezed itself into an invisible corset and my entire torso is being crushed.

Maybe not. This is the next phase of shingles, part of the postherpetic neuralgia, which, in my case is causing referred pain. That means that the source of my pain and the place where the pain is ultimately felt are not the same. In this case, they are not even on the same side of the body. My affected nerves are in the back, but all of the pain has amalgamated in the front. I feel like I am dying, but Valtrex, Vicodin, Advil, and topical treatments have done their best to make sure I make it through this horror.

I can’t sit still and it must be annoying as hell for the people sitting close to me on the plane. There is no way to apologize, and how could I possibly explain what’s happening anyway?

I visited with my friend Laurel while I was in New York. She might be reading this, although I don’t share my blog information with people I actually know. Considering the clues I gave her about tracking things down in Blogger, Hansel and Gretel’s breadcrumbs would have worked like GPS had they contained similar directional insight.

It was good to see Laurel. I always enjoy watching her tell a story. She talks with her hands, but it's like ballet. She has the most delicate and graceful hands I've ever seen. Unlike me, she actually maintains relationships instead of decisively abandoning whatever no longer fits. As a result, I still get updates on college friends and sorority sisters who would otherwise be vague images in my memory’s crackling 8mm loop by now.

Laurel and her husband wrote a book and you should buy it. Sleuth around a bit in my profile and you’ll figure it out. I actually am not lying when I tell you I know interesting people.

Part II

Being in New York was like being blasted in the face by every major life decision I made between the ages of 18 and, well, now. I realized how different my life would have been had I stayed back East. I wondered what my career would have come to when my illness smacked me so hard I fell and never thought I would be able to get up again. I work in a fairly tolerant environment, and that is largely the reason I am still working today. I cannot say that the outcome of my brain explosion would have been so positive in other career circumstances.

All week, people asked me, “Do you miss it?” Miss what? The East Coast? The New York area? A job that paid well and demanded that I be a damned bright overachiever every single day? Do I miss the pace? It’s not a straightforward answer. While paying for a shirt in the NBC store, the cashier asked me if I like living out West. I thought for a second and said, “Well, when I’m there. But then I come here…” My voice trailed off and the young woman nodded and said she un-dah-stood what I was sayin’.

I had to think about this whole issue of my choices, career changing, and—always—Bipolar Disorder. I have a job that is comfortably dead-end in its direction. There is safety in this, just as there is safety in knowing that my particular position is so ungodly demanding that nobody else has any desire to try on my shoes, let alone maneuver to fill them.

That being said, I turned down a promotion recently. My boss was recently promoted. She is quick to tell people that she got to where she is because I mentored her and taught her everything she needed to know about professional competence and advancement. It’s a big, big jump and she was hesitant to take the job unless she knew she could hand off much of her current work to someone who not only wouldn’t fuck it up, but would nurture our mission with true love.

She said I was not only qualified, but the most obvious choice for many reasons. I told her I would think about it. When I eventually told her that I had decided against the promotion, she said, “You don’t have to tell me why, but I’d certainly like to know what you’re thinking.”

I told her it was strictly due to health reasons (ah, what a euphemism). She said, “But I thought this would give you more flexibility so you could adjust your time and workload if you needed to.”

But having that option was not my point. The point was to not get into that situation in the first place. I cannot risk the stress, I cannot risk the responsibility, and I cannot risk the pressure of knowing I have no room to Be Bipolar. What would I do? What if my medication stopped working—an inevitability for all people who take mood stabilizers. What would happen if I took a rapid slide into irrational, paranoid, hostile, weeping, fast-talking, sleep-deprived hypomanic rapid cycles and people were actually depending on me to steer our department through always-choppy waters? What would I do? How would I explain? How do you make people focus on the painfully stigmatized illness and not the behavior? You can’t. I can’t.

I like my job. I find value in the work. It is not glamorous. It is challenging every day, without exception. I do it well, even now after a major brain breakdown that almost killed me.
Everything takes me longer. Every frustration has to be tempered with compassion for myself and the reminder that I will never think as quickly, work as efficiently, or shrug things off at the end of the day the way I did prior to, say, 2001. The last two episodes of jarring BP cycling very likely caused permanent changes to the way neurotransmitter traffic flows through my brain, as well as to the processes inherent to the hippocampus and frontal lobe. This is not May as she once was, although she fakes it pretty damned well.

My trip gave me occasion to look at my life and my choices. It gave me the time to talk to myself about acceptance. I need to remember why I chose the way I did, and why my choices were right for me. I need to reassure myself that my responsibility is to live by thoughts rooted in self-awareness (even when I don’t like what I know to be true), and not by thoughts fueled by hubris.

Humility, not humiliation.

On a clear day, you can see forever--depending on where you sit

Flying makes me a little claustrophobic, so it may come as a surprise that I insist on having a window seat. If I can look outside, my world isn’t so compressed. I can stare at the farms, houses, parking lots, power plants, rivers, and geological formations indefinitely. I never tire of it. In fact, when I choose my own seat, I try to place myself several rows behind the wing so my view is not obstructed.

Growing up, I was the third child of four, all born one year apart. When we traveled by car, I always had to sit in the back seat, in the middle. My parents decided these things via a birth-order formula. My sister, the eldest, got to have a window. My brother, the next in line, got a window seat. My younger brother sat in the front with my parents. Done deal. I got the middle, where I was too short to see over the front seat and blocked from seeing out of either side window.

My sister would shove her hip as far to the center of the back seat as she could. This was an intentionally malicious behavior intended to rob me of as much back-seat real estate as possible—just for the hell of it. My older brother, wanting to gain favor with the power player sibling, would obstruct my view of the window. He knew it made me frustrated and claustrophobic, and therein lay the satisfaction.

I hated the long, long drives of family vacations.

When I decided to read books on those trips, my brother and sister would continually pass things back and forth to each other so they could put their arms and hands in front of my face as frequently as possible. My parents never intervened; they believed that I just needed to learn to either stick up for myself or to not give my siblings the satisfaction of seeing my rage.

My mother denies any of this ever happened.

Hangin' in the Big Apple

Still here. That's all I can say. I'm still here.

I walked 21 blocks from my hotel to Walgreens today so I could get the rest of the Valtrex that my insurance wouldn't pay for on Sunday. Ha! They still won't pay for it, and I had to pay $93 for 12 pills. This seems wrong to me, very wrong.

I could have taken a cab, but I was so upset and brimming with tears when I left Walgreens, that I walked the 21 blocks back to my hotel. (I took the picture on the right with my cell phone while I was making my way back to the hotel.) OK, it was the short side of those blocks, but that's still a 20-minute+ walk, and I walk fast. This would be exactly the kind of thing I am not supposed to be doing. May is a stubborn, self-destructive idiot.

I want to go home.

Baby steps

(Way too uncomfortable to proofread--try to figure out any weird parts...)

Things are a lot better today. I am amazed at how quickly feeling terribly sick makes my BP symptoms kick in. It's scary, really. The stress of illness throws my whole brain off balance. I had to be careful today not to babble on and on. At the same time, I had bouts of profound depression, and not because I saw a future of pain, but simply because I felt overwhelmed by the challenge of feeling so unwell. It's not that I don't have fight in me; it's just that there's not enough me in me to withstand a significant assault on my health. There's not enough self-monitoring and inner-scaffolding to keep me from falling down all around myself.

That being said, everyone who knows I'm sick commented on how wonderfully I'm doing and how they would never guess I'm as sick as I am. Unlike with BP, people have heard from reliable sources just how horrible shingles can be, so it's something they think is within their frame of reference. Trust me, unless you've had shingles, you do not have frame of reference anymore than you would if you were experiencing BP by reading about it in a book.

So, today I survived a few mini-bouts of paranoia, a little run of hypomania-fueled chatter, and some longer stretches of severe depression. At one point, my hotel room key deactivated, and for a minute, I was devastated, as if this were a monumental, personally-aimed tragedy. I took a deep breath and realized that it could have happened to anyone and probably does on a fairly regular basis. I was able to pull myself back to a rational state, and that is a personal success or sorts. Is this not the core of cognitive-behavioral therapy...to see that our thinking is running away from us and then knowing we have the power to pull ourselves back from distress?

Anyway, I stopped taking vicodin because it was just making me too sick. How do people get addicted to it? I'll never understand it because, frankly, narcotics do nothing for me. I just don't see the attraction. That's probably a good thing, given that researchers estimate that seventy percent of BP sufferers have an addiction comorbid with their principal illness. I am relieved to find myself in the minority section of that statistic.

Despite my troubles this week, I am reminded, just by being here, that I love the East Coast, I love New York, and I miss it. The West feels sleepy and bland in comparison. Maybe it's better that I don't live with the constant stimulation of this place anymore, but when I'm not here, it's just an abstract memory. Being here, right here, surrounds me with all of the reasons I wanted to stay in the first place and those reasons are vivid and tangible.

I am surrounded by my past, but it is my professional life that I feel most acutely at this moment. I am here in a professional capacity, only blocks away from the soul of my previous professional life. My work is mousy and unassuming, but it matters. Still, how does one keep that in mind when the flash and dazzle of previous days are in buildings just a couple of blocks away?

Am I rambling? Sorry.

I had an interesting experience today. I met up with a woman who works in refugee resettlement overseas. She works in a prominent position with an organization that is one step below the UN, but works in lockstep--as a partner agency--with them. I know her, but I only see her once a year. I asked her about a documentary that came out on PBS last spring, Rain in a Dry Land. The documentary is one of the most astounding works ever produced on the topic of refugee resettlement. I asked this woman if she had met the filmmaker, Anne Makepeace. She laughed and said, "May, I facilitated her visit--she was in the camp as my guest!"

It made me realize that I still know important people, except the important people I know now actually do something--something substantial.

I am nobody. I am somebody. I hope that no matter which way my brain scrambles on any given day, I will still be a contributor.

I want to be worthwhile.

Greetings from New York City

Well, I arrived at the airport at 7:00 a.m. yesterday. After being bumped from flight to flight, I eventually got on a plane that promptly sat on the tarmac for 90 minutes. Three hours later, we were put in a holding pattern for a very long time. Finally, I reached my hotel 14.5 hours after I first arrived at an airport.

This is not the best way for any trip to start, but when you have shingles, it's particularly unfortunate. I woke up this morning nauseated and sore, unable to move let alne get out of bed.

My colleage/roommate checked on me at noon to make sure I was OK. I wasn't, so she arranged for someone to bring me some food. A couple of other people checked on me troughout the day. I went out and got some soup late in the afternoon, and attended a plenary session at the conference. I had to leave before it was over because I was so dizzy, I started sliding out of the chair (I was only half in the chair to begin with since I couldn't put my back against anything hard).

I dashed back to my room and tried not to throw up.

Here I am, in the heart of The City, bound to my hotel room, sick and in pain. I hope to be healthier at some point before I go home...

The lesser of two evils?

First, let me take a moment to appreciate the persons who came up with the concept of tagless underwear, tagless T-shirts, tagless camisoles, microfiber, and Gold Bond antiseptic wipes. Everybody say 'Hallelujah!' Hallelujah!

I'd like to ask the makers of Vicodin why it doesn't do anything for me. Am I immune to it, or is the pain that far off the chart? For a long time, I thought that bipolar disorder was the worst thing my body could come up with to do to itself. And then I got shingles. I have begged for deliverance from both.

Today I mulled over which is worse. If the doctor is right (and I hope he isn't), I have a strong possibility of being left with permanent nerve damage and postherpetic neuralgia as a result of the shingles. Then, there's bipolar disorder. If I had to choose one or the other, I think the BP. At least there are ways to manage that pain. It' easier to hide, and, I'm learning, something you can work through.

This other thing...It's a monster. If it does stick around, I'll be in trouble. I don't know how the stress of chronic pain--this pain--wouldn't eventually trigger me into a deep depression.

As a footnote, I am about to stress myself out into the stratosphere. Early tomorrow morning, I leave for a conference in New York City. The medications nauseate me, my body is its own portable torture operation, and I have to hare a room. If this doesn't trigger me, then I've proven the strength of my constitution.

I am so afraid of being stuck in my room, sick, that I bought a contract and wireless modem for Verizon Broadband Wireless service for my laptop. I wasn't planning on taking the computer until I got sick. I hope to be able to keep in touch while I'm there. This may be the only place I get to work out my "stuff."

For now, I just want to make it through that very long flight. Next post, East Coast!

Any other brain

It's 3:15 a.m. Vicodin with Tylenol is doing nothing. I should have remembered this from my knee surgery. I don't understand why people get addicted--it doesn't help my pain, and it just nauseates me somethin fierce. I am hot and sweaty.

Not even this could help me sleep through the pain.

I want to die.

The sleeping evil

It's shingles!! God fucking damn it!!!

I am trying to think of a time I was this uncomfortable. Nope. Nothing.

I am leaving for a conference in approximately 48 hours, but according to the shingles timeline, I'm not even halfway through the episode. I am whimpering. I am close to tears. I am miserable. And sleep-deprived.

I called my co-worker/hotel roommate for the trip to make sure she has had chickenpox. She has, and right at this moment, she has poison ivy. The hotel is going to put a sign on our door "Danger: Cooties! Do not touch the guests!"

My nerves feel like they are in flames...

miser somes

Ego sentio miser. Meus somes sino.

Whining doesn't sound so petty if you do it in Latin. After getting through a week that included a pelvic exam, two ours with a lawyer, the trans-vaginal ultrasound, the resentment necklace, and shopping for pants, it seems unfair that I find myself in my current situation.

At the beginning of the week, I realized I was developing a bad knot in the Latissiumus Dorsi muscle on the right side of my back. Instead of getting better, it has continued to worsen day by day. I've taken Aleve, used ice and a heating pad, consumed wine (what the hell?), and put myself through a long sequence of site-specific stretches again and again. Sometimes, my breath catches if I inhale too quickly. It's that bad.

Now, I have a high pain tolerance, and this by itself wouldn't bother me, but something else happened at the beginning of the week. What I thought was a hive appeared in the middle of my back and it itched like crazy. I managed to keep my hands off of it. As the week progressed, my hive-like bump grew into a constellation of large, red, hard bumps on a scarlet background. The itching is driving me insane, except now it has changed--the bumps still itch, but if I touch them, they burn like fire. My husband lovingly swabbed the area with a Gold Bond antiseptic wipe and followed up with a gel for poison ivy (but not without a running commentary along the lines of "Eww. Honey. That's disgusting. What is it?").

I went online to scope it out. My husband walked by and said, ""What site are you on...reallyscareyrashes.com?" I shrugged.

It's either bed bug bites (oh, please, no) or the dreaded Lamictal Rash (no, no, no, no...). Now, The Rash only hits about one in a million Lamictal users, but believe me, I am the person more likely to be that one in a million. I used to take time-released Xanex every day when my anxiety was off the charts. I had to stop because I started getting quarter-sized welts all over my body. It's an extremely rare reaction. Of course.

Of all of the meds I take, Lamictal is the one I am least likely to give up on easily. It is the glue that holds my meds together. It is the one thing that truly targets Bipolar I depression. Without it, the whole damn house of cards that is my BP medication cocktail will collapse dramatically.

In a better world, I would not need any medications. In a perfect world, I would not be ill. I hate having bipolar disorder. I hate the glitch in my brain that forces me to be ever-vigilant about every nuance of my health and mental state. It forces me to acknowledge my defect every single day. I want to go back to a life without medication, without weird physical blips, without worrying about whether or not my behavior is appropriate or reasonable.

Sigh. We, as humans, are capable of getting through so much more than we know. It's not until we are challenged, tested, and have our feet put to the fire that we truly know our tolerance for discomfort. Every day, I interact closely with people who have experienced horrors far beyond my comprehension. I have no frame of reference for their experience, yet I believe it to be tragic. They, on the other hand, believe that true tragedy exists in those who cannot find a reason worthy of surviving life's harshest blows.

Sometimes I wonder how ever made it this far, but I also have days when I wonder how I can make it one more step. I think about Karma and I wonder why I, as a person who has tried to be good and right and compassionate, still face weeks like this one, filled with poor health and intense physical discomfort.

I want a new brain, a new body, and a bit more strength to tolerate the challenges coming my way.