Quiet reflection at the core

Every day, I wake up and ask myself, "Can I still do this? Is today the day? Is it worth the effort? Is it worth the effort to fake it at least?" Every day, without exception.

A few years ago, I promised myself I would not force myself to live if I could not see a reasonable return on the investment. Every morning, upon opening my eyes, I need to take stock and evaluate my situation. There are always pros and cons, and how the list is weighted to one side or the other changes almost daily.

For me, having bipolar disorder is very difficult. The symptoms themselves are distressing, but there's more to it than that. The constant, chronic side-effects of medication frustrate and disgust me. Just having to take medication is a constant reminder that there is something terribly wrong with me and it cannot be fixed. I would prefer to have a surgery or a cure. Perhaps "prefer" is not the right word. I want these things to be reality so I can live a normal life. A normal life. More on that in a moment.

The argument can be made that there are millions of people who take daily medication, but here's the part that grinds into my spirit: When you have a chronic illness, you have it alone. When you have a brain-based illness, you can't even tell anyone, so there is this incredible isolation that, for me, is incredibly painful.

I am expected to take medication not so much for my own benefit, but so I can be socially appropriate and not be a bother or source of discomfort for other people. I have yet to meet someone whose interest in the treatment of a patient like me had more to do with getting us to feel better nearly as much as they just wanted the odd and sometimes offensive behavior to go away. I believe intervention is always about behavior and judgment and has little to do with concern for the sick person's health. I have yet to meet someone "normal" who has proven me wrong.

From this observation and belief, I have come to feel a tremendous, pervasive pain inside of myself. What makes me feel so burdened is this truth about suffering alone. I have an illness I cannot tell anyone about. It is a secret, something that must be hidden and kept to myself. There is the reality that nobody really wants to know, but there is also the paradox that those who might want to know what affects me so profoundly will be the very same people who will judge me for it. How can a patient be judged for being ill? Are people judged for their asthma, lupus, or epilepsy?

I cannot let anyone know the truth about me. They might overhear me say that I pay $300 per month for medications. They might see that I am prone to dark moods. Nobody notices the really good moods because, culturally, everyone likes those and so they can't possibly be seen as a problem. When I was first diagnosed, both my doctor and therapist cautioned me to be very, very selective in whom I told about my illness. They both acknowledged that this was a shitty way to have to go through life, but we do not live in a culture that is forgiving of or welcoming to people with this particular illness. The stigma is real, and it is prevalent--even within the medical community.

My secret is an actual physical heaviness I feel inside. It feels worse some days than others. On the worst days, I find it hard to breathe because the heaviness is too consuming, sucking all of the oxygen out of my body. This is a lot to carry. I can't tell anyone why I'm weepy today or why I may not have slept in a week or why I can't stop talking--and a mile a minute, at that. I live in a state of near constant sadness. It's not depression, it is loneliness. How can I be expected to live an integrated and productive life without ever being able to just be who I am? I am constantly vigilant in my self-monitoring so as not to reveal a symptom or tell-tale behavior. I am exhausted from the effort.

This secret, this loneliness, this knowledge that judgment is always lurking if given the opportunity, this is what drags me to the place where not living is far more appealing than living yet another day of a tightly compartmentalized life. To admit what is wrong with me is to invite skepticism and scorn. Bipolar disorder is the stuff of tabloid rumors and social mockery. Revealing the illness immediately invites a near total loss of credibility, one that, no matter how hard one works to prove his or her lack of a disability, will still be thrown into that's person's face at the first slip up. It doesn't matter why we make mistakes, get angry, have moods, or achieve amazing success. Either way, the mention of Bipolar disorder will surface as a disclaimer or accusation, depending on the situation. I find this to be a particularly cruel reality. and it is a reality.

I need to work. I need to function. I need to remain integrated into the greater world. I am sick. I cannot tell and still have the life I know. This is the Gordian knot that binds me into loneliness and sorrow. I am trapped with this illness that has no cure, only a deeply entrenched stigma.

I have nobody to talk to. I can blog, journal, ruminate, go to therapy or support groups, and read the words of others who are similarly afflicted, but at the end of the day, I am still alone, still living with a secret, still unable to have close friends, still living in fear of being ostracized, marginalized, and even more isolated.

This is a hard life to live day after day. I am increasingly less sure it's worth it.

It's official. My boobs are weird.

It is a quest that has spanned over a year, many,many stores, and countless brands and styles. No bra seems to fit me.

Today I went to the charming boutique where I got lingerie for my wedding. This place is like the cathedral of all bra knowledge. It's the kind of place where just after you walk in, the owner will look you over and produce exactly what you need and in the right size.

I explained my fit problem to her. I also explained that since I had shingles, I found wearing a bra to be almost unbearable. This makes fit especially important.

She whipped out her measuring tape and hurried me into a fitting room. She measured and measured again. She clucked her tongue and bustled out of the fitting room. She came back with one bra. One. It is the one I bought for the wedding. It hurt just to look at it, and as soon as I had it on, the saleswoman scowled and kind of bit her lip. She left and came back with another bra. That one sort of fit, but if I'm going to fork over $67 for a bra, I want it to fit like it was made just for me.

And that was it. That was my entire selection. My friend who was with me, though, the one who takes a 32D, had an entire drawer full of delicate, lovely, sweet bras to try on. They all fit and they all looked perfect on her.

The saleswoman came back once more with a whole bunch of C-cup bras. I told her there was no way, not even at my current 181 pounds, I would ever fill a C cup. She told me try on a few anyway. After the second one, she got the message loud and clear. May is not even close to a C cup.

So, I muddle along with my impossible bra size, lingering shingles pain, and a collection of very utilitarian bras that don't quite fit. Sigh.

8-27-08 12:11 p.m. My backyard

(Click on the picture for the really psychedelic view.)

Truth in advertising and then some

It's been a while, but it's time once again for May's Adventures in Customer Service. My husband and I are looking for a headboard for the guestroom. We decided to look online to see what we might find in stores. One local retailer had a nice headboard that might work. Read carefully:

• Solid Pine Construction
• Iron Scroll Accents
• Wax Finish
• Guaranteed to Warp, Crack and Split
• Hand made in Mexico

After reading and then re-reading the description, I felt I had to send an email to the company. Here is the transcript of our e-conversation.

Dear Furniture Store:
My husband and I have been shopping around for a headboard. We saw one we like on your Website, and after reading the description, we would just like to clarify something.

The description for this item clearly states that this solid pine headboard is: "Guaranteed to Warp, Crack and Split" Since the piece is only wax finished, we can see that this description is certainly plausible, but we just wanted to make sure we understood this correctly. Thanks for clarifying.

Hello May,
Thank you for your inquiry, The description is true and accurate, the piece as many others we carry is of solid construction pine wood in rustic style. Once again thank you and we hope to hear from you soon.

Henry Guzman
Online Sales Manager

Mr. Guzman,
Thanks for your prompt reply. So the wood really is “guaranteed to warp, crack and split” as it says in the description? That was the part for which I needed clarification. We have other furniture that is similar, but it hasn’t self-destructed as has the furniture described in your product listing. Good for you and your company for being so honest about the furniture’s future behavior! This is helpful to know and we do appreciate the honesty.

Get your Twinkies on

When's the last time your artistic senses were tickled by Jell-o, paint, Cap'n Crunch, and Twinkies?

Sometimes, the cure for momentary boredom is creativity. Even if you don't feel creative, you can still take a shot at making something original. It's fun, it's silly, and despite the description, it's not messy at all.

Take some time, make some art. Save it if you want, or just leave it and go on to something else. Your canvas is virtual, your medium is mostly junk food. It's more fulfilling than you might think.

Click here to enter your studio. Your tools are across the top of the screen. Your cursor is your paint brush. When you finish your work, type a message to the masses. Preview and then keep, send, or have an artist's hissy fit by trashing your canvas. This is way better than fingerpainting. No mess! No more stress!

Have fun.

I love the Internet.

Four hours

Four hours of sleep. I actually slept, so that in and of itself is a miracle. I want to live without Ambien. It was never intended to be a long-term medication. There is some concern in the medical world that nobody knows what long-term effects this drug will have on the brain and brain wave patterns. My brain has been smacked around enough. Let's give it a little love and try to do without the Ambien. I'm becoming immune to it anyway.

I'm tired. I want to take a nap. Nap = bad. Falling asleep in front of the TV = bad. Must stay awake all day.

It's a gorgeous, sunny day here. I should probably step away from the computer and do something outside. I'm avoiding that because my back patio is full of handmade textiles that need to air out. They smell like mothballs. They spent quality time in a jungle. If I go outside, I will be reminded that all of those things need to be ironed or steamed because they're terribly wrinkled. I can't tell you more about that whole story because it's connected to a part of my life I don't share here. Trust me, it's interesting.

I was outside earlier today, trying to clear my head and not think about life so much. The late-summer wave of flowers has bloomed in my garden, so I went out and tried to take pictures. My hand tremor has been pretty bad lately, though, so most of the pictures were out of focus. I did my best uder the circumstances. My husband said he has noticed that my hand tremor is getting worse. He really never noticed the tremor before, but now he can clearly see it.

I hope this doesn't mean lithium is going to fail me. As much as I don't look forward to kidney failure, as much as I hate the weight gain...Lithium works. I am not dead. That's called proof. I live with a nagging fear that any of my meds will crap out. It took a long time and a lot of misery to get the mix just right. I have no interest in revisiting that process, although I hear it's inevitable.

I hate my brain. I hate medication.

My brain is tired. I am tired. Why does everything overwhelm me? Get off the couch, May. Go outside and get some fresh air and sunshine, May. Drink more water. Get a life, May.

Fuschia cosmo

Zinnia

Pink cosmo

Sunflower center

I want to sleep

It's 3:30 A.M. I should probably go to bed. I finally took my evening meds, and now the nausea has set in something fierce. I usually sleep through it. This is my life. I have no hint of sleepiness--none--until I medicate. I could stay up indefinitely, but as I've mentioned before, I don't want to cause my husband undue worry.

Wow. There is nothing on TV at this hour except for infomercials. Half of them are for diet products or exercise equipment. Apparently it's the fat, out of shape people who stay up all night. Oh. Wait. Forget I said that.

To bed I go. Good morning, good night.

I want to believe

Every now and then, I take a stroll through cyberspace to see what the other bipolar boys and girls are up to. Some of what I find is interesting, some is truly incoherent, and some if it is infuriating if not flat-out insulting

Bipolar Chicks Blogging has its moments (they're funny!), but I get a little confused by the group blogging because I can't always tell who's writing. Elsewhere there are a lot of people out there who aren't so funny and who take themselves verrrrry seriously as imparters of bipolar related knowledge. They have a bead on some good information, but their intensity hints of desperation to be taken seriously. I want to be taken seriously, but sometimes it feels like other similarly afflicted people are the only ones even making the effort.

There are the God people. They do not refute the existence of bipolar disorder (I'll get to that in a moment), but they have an unshakable belief that only through God's love will they find relief from their illness. They have a lot to say about God and Jesus, and how prayer and living in Christ's love will lead all of us BP patients to healing. They do not have any advice for atheists like me, other than to accept God into my life or I will live under the curse of BP forever. I had God, I found science, and faith in the omniscient unproven was one less irrational belief cluttering up my already addled brain.

And then there are the other kind of nonbelievers. These are the people who are angry and bitter at having been told they have bipolar disorder. They took medication. It proved uncomfortable. They stopped medication. They found clarity. They found they may have been misdiagnosed all along (didn't they ask questions at the time? Baaaaaa?). Now they have reached the apparently obvious conclusion that not only don't they have bipolar disorder, nobody else does, either, because we can't have an illness that does not exist. Some of them really believe in God, but since I don't, this might make us even.

I knew that Tom Cruise and the followers of Scientology (is L. Ron Hubbard God?) do not believe in mental illness at all, and their vitriolic scorn and skepticism of psychiatry is legendary. What I did not realize, though, is that there are a lot of people out there who believe that the best way to cope with mental illness is to deny its very existence. I have bipolar disorder? No, no, no. There is no mental illness. POOF! I no longer have bipolar disorder! If one could not possibly accept the diagnosis, I could see the case for throwing out the baby with the bathwater, so to speak (not really a BP kind of behavior, though), and declaring the illness to be wholly...nonexistent. There. See? I can't have something that doesn't exist, and--good news--that means you don't have it, either. Or you, or you, or you! A misdiagnosis combined with a failure to ask questions and do one's own homework does not negate the legitimacy of the illness.

I miss Spalding Gray. Nobody could speak about mental illness with the same level of humor and empathy. I was thinking about him this week because (here we go, May's brain in action...) I was listening to Mickey Hart's Apocalypse Now Sessions CD. This got me thinking about war films set in Southeast Asia, which made my brain jump to The Killing Fields, which logically led to Swimming To Cambodia, Spalding Gray's best spoken-word performance, ever. I liked his voice. His voice... I switched to Blue Man Group's The Complex CD, and skipped to the song, Your Attention. Spalding Gray's voice is one of three heard speaking in the background of the song. His is referred to as "the low self-esteem voice." You have to listen to understand. Given Spalding's frequent and candid reflections on his own complex emotional layers, I've always thought his part of the three voices was a sly wink and a nod to those who are in the know.

Anyway, as I stumbled upon blogs and Websites related to my illness, I noticed that many people who have it feel an intense need to write about it. I think we all want to understand it just as much as we want to understand how we feel about it. It's not like it's something you can discuss in polite company. We are alone with our situation but not alone in the greater electronic community. It's validating to be able to compare notes and see how similarly the illness disrupts the lives of all of the good boys and girls whose brains went Pop!

You might want to re-read that...

A message to the three people (that might be a generous estimate) who read this blog.

In a more coherent moment this morning, I went back and edited all of the posts from the past week. In some cases, I had to re-write entire paragraphs to articulate what I really wanted to say the first time around. --MV

Well, I'm not insane

The PsychCentral Website has an array of insightful diagnostic tools to measure your sanity and overall mental well being. You have to register, but that takes less than a minute and the only personal information required is your email address.

Being ever curious about scientific assessments of my mental health, I started with a lengthy tool called the Sanity Score. As it turns out, I'm relatively sane (compared to whom, I'm not certain); however, I have some serious "concerns." Oddly enough, bipolar disorder didn't even register on this test. You're not in serious trouble until your score exceeds 150. Here are the highlights of my test:

Your Sanity Score
116

(The Sanity Score is based upon a scientific algorithm with scores ranging from 0 - 288.)

Based upon your answers, you appear to be experiencing some distress at the moment -- your overall mental health is affected by this distress. People with similar scores tend to experience more difficulty in coping with life, and may feel like they need more help than they're currently getting. Because of this, your mental health could likely use a little boost.

(Subscales range from 0 - 100)

(!)General Coping: 64 People with similar scores as yours tend to feel overwhelmed by life or specific things in life right now. You appear to express a great degree of unhappiness with life right now, which strongly suggests a change would be helpful, such as seeking out professional help or talking to a doctor about your concerns.

Life Events: 31 You're experiencing events in your life that may be negatively affecting your overall mental health and your ability to cope with other things in your life. This may also affect your mood.

(!)Depression: 84 People with scores similar to yours are typically suffering from a moderate to severe depressive episode. This is also known as clinical depression or just plain depression. People who have answered similarly to you typically qualify for a diagnosis of major depression and have sought professional treatment for this disorder. (I'll get right on that...)

Anxiety: 45 People with scores similar to yours are typically experiencing some degree of anxiety, which may or may not be a concern serious enough to seek out professional help. Remember that a little anxiety in normal, everyday life is to be expected and is a good thing. Nobody should be without any anxiety whatsoever, as anxiety is our body's way of telling us that we should pay closer attention to a situation, event or person in our lives (even if that person is ourselves). Scores in this range suggests a person may be experiencing elevated levels of anxiety that may be causing some distress in an individual. The most common anxiety disorders diagnosed are either panic disorder or generalized anxiety disorder.

(!!)Self-Esteem: 100 (ding!ding!ding! We have a winner! Or a loser, if you're me.) People with scores similar to yours express some major concerns with their self-esteem. Self-esteem is most often the product of our upbringing and personalities. It is something that a self-help book or psychotherapist can help a person learn to readily improve in even just a few sessions. (Snort laugh of skepticism and disgust)

Eating Disorders: 40 People with scores similar to yours often have a trait or two associated with an eating disorder, such as anorexia or bulimia. Eating disorders occur due to poor self-image and self-esteem, often as a result of childhood experiences. People with scores similar to yours often go through life with a somewhat unhealthy attitude and approach to eating, but aren't bothered by it enough to seek professional assistance for it.

Your BMI: 33.
Your body mass index suggests you may also be dealing with obesity as an ongoing life issue. (This thing is fuckin' psychic.)

Dissociation: 25 People with scores similar to yours sometimes lose track of time, people, places or events, but not to the extent that it causes serious problems in the individual's life.

Relationship Issues: 31 People with scores similar to yours often have a minor or moderate relationship issue that is causing them some concern.

Physical Issues: 50 People with scores similar to yours often have a physical issue that causes them some concern or effort in their daily lives.

(!)Technology Issues: 69 People with scores similar to yours often complain about having difficulty controlling their time or use of the Internet and other technologies. People with this sort of problem often identify it as being "addicted to the Internet." Some therapists may be able to help you with this issue and reduce your Internet use or use of other technologies so that it interferes less with important relationships in your life, such as those with your friends, family, or significant other. (I'm surprised this score wasn't higher.)

Obsessions & Compulsions: 25 People with scores similar to yours are sometimes diagnosed with an obsessive-compulsive disorder or have obsessions or compulsions that affect a person's life from time to time. Many people who have similar scores live with these occasional obsessions or compulsions fairly well and do not seek additional treatment for them. (We're all a little OCD.)

Posttraumatic Stress Disorder (PTSD): 42 People with scores similar to yours sometimes have a trait or two associated with posttraumatic stress disorder (PTSD), a disorder characterized by reliving a suffered trauma through flashbacks, nightmares or other recollections of the event.

Borderline Traits: 54 People with scores similar to yours often have traits associated with borderline personality disorder. (OK, this result just plain hurts. Seriously. Ouch.)

Recommendations
You have 5 serious concern(s) that we've identified. Generally such concerns should be checked out with a mental health professional as soon as you can. (I'll get right on that.)

You have 9 milder concern(s) that we've identified. Such concerns may be a part of an ordinary person's usual up's and down's in life.

starving

Today's mood started with a Chico's gift card. My sister-in-law gave me one for my birthday back in May. I keep forgetting I have it, and when I do remember, I have trouble keeping track of it. Maybe it's a subconscious block. Why would I want to put expensive clothes on a body like mine? It's ridiculous. Part of me also knows that there is nothing in that store that is going to fit me. Of course, the accessories are nice, but on principle alone, I just can't bring myself to pay $50 for a necklace I can buy at Target for $10.

So, more than three months after I got this gift card, I have managed to stall on spending it. This makes it very difficult to answer the question, "So, what did you buy with the gift card we gave you?" (Stick with me here. This post isn't going where you probably think it is.)

Since I'm on vacation now, I thought I would take an afternoon and torture myself with a trip to Chico's. Buying online is not an option when you are my size and shape. I stayed in my pajamas all morning, and finally got in the shower at 1:00. I ironed some decent clothes to wear. Chico's is one of those stores where the sales people follow you around and pay attention to you and start a dressing room full of clothes you'll never fit into. In other words, I decided to wear decent clothes because I knew someone would definitely be looking. Oh, and the store is in the upscale fashion district that I generally avoid, except to go to the bookstore.

I stepped out of the shower and felt sharp pangs of hunger. I tried to ignore that while I put hydrocortisone gel on all of my itchy welts. I slapped on my EMSAM patch, skipped the lotion, and remembered that I hadn't weighed myself in a few weeks. It is just pointless. Still, I've been really conscious about what I've been eating for the past two months, and I've all but eliminated eating anything between meals. I used to eat fruit or some crackers with a slice of cheese, or maybe a handful of nuts and raisins, but when I gained a pound and a half last month, I could see that even these snacks were harmful to me.

Today I ate what I eat every morning: plain shredded wheat with soy milk, a cup of coffee, and a cup of cantaloupe chunks. Three hours later, my stomach was growling loudly and my hands were trembling. I thought about eating, but decided it would be better to weigh myself first. The numbers popped up in their digital coldness: I have gained another 1.4 pounds.

I am hungry. I want to eat. I don't understand why I am hungry if my body will not even use the goddam calories I dole out to it now. I am eating less and less and gaining more and more. And I am hungry.

I am hungry for food. I am hungry to feel like I am satisfied. I want to stop thinking about every morsel that goes into my mouth. I am starving. I miss food in all its aspects: shopping for it, creating recipes, cooking new things, sharing it, and enjoying what I ate. Now food just gives me anxiety.

I am not sure how much less I can eat without crashing my blood sugar and affecting my medications. Would exercise help? No. Exercise just makes me too hungry to not eat. Any exercise I do is cancelled out by the resulting overwhelming hunger that eventually forces me to eat. Weak character.

While visiting Jolie, I found that when I walked around the house, I tended to keep my head down while I concentrated on the tile floors. The problem was that mirrors were everywhere in her house. Not so in my home. The mirrors in my house are small and generally only reveal a human reflection from the chest up. The only full-length mirror is in the basement storage area, and it is covered in dust. Jolie has huge mirrors that hide nothing. The tile floors are quite beautiful.

This story isn't really about food. It's about love. It's about loss. I have lost many of the things I used to love, and now I am starving. I don't know how to replace them without making everything worse. I don't have friends anymore, at least not anyone physically present within thousands of ZIP codes, and definitely not anyone I can really talk to without having to leave things out. Nobody. Now that I quit therapy, I truly have nobody to talk to. My work causes me extreme anxiety since I worry incessantly that I'm going to do something wrong. I am not good at anything anymore. Nothing comes easily, but I still live under the very high, very mistaken expectations of others who just don't understand that I cannot be the person I once was. My brain is fucking fried, the neurotransmitters don't work, and I just can't do things the way I used to. If I can't have hypomania, I want the rest of my brain back as compensation. Why do I have to give up so much in order to make other people comfortable with what I am?

In a former life, I prided myself on my intelligence, my ability to hide my feelings, my exceptional skills as a liar, and my ability to think about dozens of things simultaneously while keeping them all straight. I was a coherent conversationalist, I was creative and resourceful. I know that at one time, I was an excellent friend, a sincere friend, a good daughter, and someone who was capable of loving other people. None of this is true now. None of it. No matter how hard I try.

I am lonely, and I am empty, and I am starving.

From the New York Times

The New York Times has an entire Website dedicated to informing the world about bipolar disorder. It's great. I highly recommend the multimedia section called "Voices of Patients." It takes about ten minutes to get through all nine commentaries. I skipped the guy who doesn't take medication, only because he is both incredibly annoying and sounds like someone I know but just can't stand. There is something I can relate to--painfully--in all of the other eight stories. This will be insightful for anyone who wants to move beyond a definition of BP and find out how people are defined by the illness.

There is also a recent article about a patient who struggles with BP2, like me. His story and its accompanying frustrations could easily be mine. This article is short but dead-on accurate.

Several stories on the site make a point of mentioning that as many as 20% of people with BP commit suicide. Bipolar disorder is the sixth leading cause of disability in the United States.

There's some not-so-tasty food for thought.