Preparing for Battle

This week Something Very Hard is happening. Although it is highly related to having bipolar disorder, I can't really be more specific without getting a little too close to the boundaries I set for myself regarding anonymity.

Consequently I am doing something I've never really done before. Since I'm crying when thinking the word "Tuesday", I am planning ahead to be depressed. I'm making a grocery list of things I may be willing to eat, which can be complicated as when I'm depressed I tend to have very specific food cravings which change from episode to episode, and right now is further messed up because I have a probable ulcer and a lot of foods make me sick, combined with nausea from starting many medications. Tomorrow I'll leave the house (something I rarely do on a Sunday) to go to the store. I'll also be refilling any prescriptions that may run out in the new few weeks because going to the pharmacy is an annoying trip in the best of circumstances and when I don't feel well I've been known to go without meds rather than drive in to town. I'll also buy several books as I'll need something to do and I'm rarely able to handle paying attention to tv or movies. I also am going to buy supplies for a home improvement project, which hopefully I will be able to handle as distraction.

I also am unlikely to be posting here for a while. I could be wrong, but I don't want to post about what will be most heavy on my mind. I also will be fairly strongly sedated with medication adjustments, and I try to limit what I say when I'm not in a place to monitor my words. It will probably be about a week, less if I find something to say.

Just please don't give up if the most recent post is a week old. I will be back.

How I Work

One of the first things I was told after completing an extensive diagnostic interview with a doctor I call the guru, who is one of the top world experts on bipolar disorder, was that it was amazing I had been able to work while going to long without treatment. At that point I had never missed a day of work due to the illness. Over time that has changed, and I did have one long disability leave, but mainly it doesn't affect work that much. I struggle with paperwork and organization, but so do people without bipolar. It's just that in my case I did not have that problem until the illness got bad.

However, the reason I've successfully worked is more my job works with me. For one thing my company is extremely supportive and always has been. I've had individual co-workers who have managed to make things miserable from time to time, but I've outlasted every one of them and been supported in doing so, so I really don't care. There are 2 key tricks: flex time and co-workers.

Flex time is most important. I use it 2 ways. First, I am unable to sleep without substantial sedation. When I'm doing really well I can fall asleep at 1 AM. I work over an hour from home, so if I were working a traditional healthcare day I would need to leave home at 5:45 to arrive by 7. Even a traditional work day would require leaving at 7:45, and I am simply unable to safely drive that early. Therefore I am able to adjust my leaving time to what I need (ideally about 9:30, lately more like 11 or 11:30). I work until 6 or 7 pm and arrive home, ideally (but rarely), around 8. Usually I work longer hours and have been known to not get home until midnight in a crunch. It's not what I would choose, years ago when I was able to do a 7-3 shift I loved it, but now it would be impossible. Plus if I drag myself in before the meds wear off, not only am I risking driving unsafely but I am not very good at my job. Fortunately this is pretty much assured by the Americans with Disabilities Act to be something nobody can take away. The second way I can flex my time is why I am writing this post in the middle of a Wednesday. I have been off my meds and gradually re-introducing them. I have taken half a dose of antidepressant the last 4 days and it's made me pretty tired but I've been ok. Yesterday though I overdid it by adding dinner with friends, a counseling appt., and shoe shopping to the mix. This morning I tried over and over to wake up, and I just couldn't. I called in to say I'd come later, then fell asleep and slept through the alarm and realized I was too dopey to drive still. So I was able to call in, but it won't count as a sick day because I'll work Saturday. It's not my favorite trick, but it has saved me over the last 2 months, as I have done this almost every week.

The other factor is co-workers. The people directly in my department know about my illness. For the most part they are wonderful about accomodating it. I've had managers call me and tell me they know I've felt bad and they've arranged for me to take the day off. I've had people help me out to alleviate being swamped and making me more tired. And they don't act like it's a big deal. I've been told before they'd rather I ask for help when it's just needing a day off than when I need 6 weeks. As long as we are a team, I can do a job that I'm not entirely cut out for. I don't know how long this will last, I don't plan to do this forever as I someday want to work more as a mental health advocate than as a therapist, but for now, this is my miracle.

Underneath the Mask

In thinking about the things I've written over the month this thing has been in existence, I'm realizing that I'm presenting mainly one side of the story. Six months ago when I began to feel this was something I was ready to do (be public with my experience, not write a blog) it was because I was becoming aware that I had truly learned to live with my illness. At that time and straight up through now I had been cycling a lot and had been through some miserable experiences. In the last year I have had a rather difficult time with meds because I took a new one last spring and soon after developed severe hypertension. I stopped that med, but the hypertension continued. It was not possible to know if I just had developed hypertension, or if it was a reaction to another of my meds, and if it was a med, it was hard to know which one. I went through a lot of trial and error as we attempted to sort that out, trying lower doses, being off a suspect med, re-starting it, having my blood pressure skyrocket and going off it, and then having my blood pressure continue to rise. All the while my mood swings are miserable and I couldn't have my meds increased, nor could we easily try anything else. It was bad, but suddenly I realized that I had developed a new ability. I was unhappy and tired and symptomatic, but I was not losing control. I wasn't on disability leave, I wasn't having random temper tantrums, I wasn't suicidal. I was holding it together and doing well at it. Later I realized I was getting worse and on my own began to plan for disability leave, which I never needed.

At this point in time I am experiencing some difficulties in my life. I don't want to name them specifically as it would be identifying to some people who know me, but there are some real issues in my treatment team, and I rely on my treatment team. I've been horribly upset and unable to hold down medication. I therefore have been more or less off my meds for about a month. I've taken what I can, but that hasn't been enough to maintain blood levels.

I have had trouble even admitting that on here; I want to be the totally together person I wish I were. I wish I were able to say I'm the perfect model of medication compliance. But at this point I have failed. Except that I was trying to take them all along, and I am now re-starting them gradually, and I was in communication with my doctor all along, instead of being a more typical non-compliant patient who just does not take them. Considering I currently have a low level of lithium and no other med levels whatsoever I'm doing extremely well. But the difficulties I am having, including the simple fact that I am upset about something and it affected me to the point I was throwing up everything I ate for weeks, remind me that I am still bipolar. I have a problem and have resorted to the worst thing I could do to solve it: risking illness.

So, in the spirit of honesty, this blog is devoted to talking about functioning with bipolar disorder. But so far I have read it and thought "wow, the confidence in those thoughts", and while it's true that I'm quite confident in how I handle this illness, I also am fumbling through it. I'm past the dark days when it hurt unbearably and stole my coping skills. I know a lot about my enemy and even more about how that enemy and I interact. But even so, sometimes it seems the enemy is in charge. There's a lot of the time I have no idea how to get through something or that I feel like the illness is winning. There are lots of things that separate me from "normal people". Little things, like having no social life, an inability to go to church, few friends, incredible difficulty with things like paying bills on time (I get a utility shut off about every 6 months accidentally), and much of the time I need help to do simple things like clean my house.

I just don't want to seem like Miss Bipolar Know It All 2006. It's a lot easier for me to talk about how I have conquered this or that and how I have done something despite the illness. But it's another story entirely to admit to the really hard parts.

But all things are fair game. Sometimes at this point I'm not talking about things I'd like to because I've not figured out how to do so and protect my anonimity. As time passes I may be able to that more and demonstrate that sometimes I'm totally clueless. It really would help at times to be able to answer questions because that helps me think about things I'm less confident about. So if a day comes you're sick of confidence, ask a question.

To the students

Sometimes it's all about who you know....In the last 8 hours my blog traffic has increased by about 300%. Or more. I can't do math. This is all thanks to my friend Throckmorton (yay, my first link, I wondered how to do that) and his class. Some of whom possibly prefer reading blogs to class?:)

Anyway, welcome students of my undergrad alma mater. I'm trying to no avail to get you bonus points. Please feel free to read, to comment, and most of all to ask questions. I am a fairly shy person about many things, and deciding to be open here was not easy. But I feel led to do this as much as I have ever felt about anything, and I need your help to do it right. Ask anything. I have done everything from having a fairly dramatic diagnosis to participating in a drug trial to screaming at a psychiatrist at the top of my lungs because she was trying to involuntarily commit me. (Pink slips truly are pink!) I've done embarrassing and impulsive things, I have lost many precious friends, I've taken meds that people I work with regard with awe. ("Did you know this stuff can cause spontaneous heart stoppage?" "Yep, just stopped taking it 2 months ago!") I've wet my pants at work from side effects. I've been called crazy in staff meetings, by someone who meant it. And I have learned so much. I believe Dr. T would agree that I am not the same person who started this journey. And I am the better for it, although at times I think we've all wondered who the first casuality would be.

The best thing about a career with psychiatric patients is that every single one can and will make an impression that lasts forever. Please give me a chance to show you one impression which will make you a better professional for the rest of your life.

Change is too possible

One of my greatest battles has been against my own ideas about how defining bipolar disorder was. Back in the years I was diagnosed with "only" depression I had numerous disagreements with those treating me about medications. First I refused to take meds when I needed them. I had always hated medications and generally avoided even tylenol. Then I agreed to take them, but did not respond well and received some rather questionable advice. After a year I wanted to stop taking them. My psychiatrist at that time did not believe it was a good idea to ever stop taking them after a diagnosis of severe depression. I disagreed strongly because I hated the pills, and because the severe depression had been directly traceable to highly traumatic events in my life. Ultimately I prevailed by refusing to return to see him and taking myself off the medication (not recommended). Despite all the warnings I did very well for many months. About 6 months into it I did need to start taking ambien for sleep occasionally, but that was much better than antidepressants. I made it a full year before I needed antidepressants again. Looking back now that year was one of my great victories, because "they" said I couldn't do it and I did. What's more I did well on that antidepressant for another 2 years, which is not typical for a bipolar patient. That gave me time to finish graduate school and become established in my career before bipolar disorder took over my life. It wasn't that I was not symptomatic in those years, I first was told "I think you may have bipolar disorder" by a new psychiatric in grad school. I promptly said that I did not, walked out, and refused to return. The word did not come up again until I spoke it to a therapist 3 years later.

One of the reasons I fought so hard to not be diagnosed with bipolar was that I had so many negative ideas about it. I thought there were so many "can't"s associated with this disorder, and I didn't want to hear that. It seemed beyond cruel to have to consider any chance that I would lose the things I had worked so hard for so soon after they came true. I did not grow up in a way that made high school graduation, much less a master's degree, particularly likely. There was a very long period of time that I absolutely refused to believe that my life might not work out according to plan after I had beat so many odds already. I forgot that my life was going to work out according to God's plan and that just because something scary was happening that God couldn't shift that around to make it work out. And it did. It has been very different than I dreamed of, but nonetheless wonderful in many ways.

The main thing I was afraid of is that I came out of school with this idea that mental illness is rigid, defining, and unalterable. I had a lot of trouble separating the statistical odds from reality. For example, 80% of bipolar patients have substance abuse issues of some kind. I had a very difficult time learning that some of that 20% were, like me, at the opposite extreme and had never been drunk on anything until meeting a prescription medication that caused a bad response. I thought that if all bipolar patients required supervision for many tasks, then I would too. I thought I would refuse to take my meds and would take off on high risk adventures.

Instead I was diagnosed, learned about my illness, and began to see that some of my previous choices had been guided by bipolar illness. One example was my adventure with the Skyblaster. This was a pair of seats, a couple of harnesses, a circular frame, a bungee cord, and a slingshot. I am terrified of heights, so normally would not have considered such a thing. But my equally ill-advised boyfriend of the time dared me and everyone else I was with kept teasing, and so I was shot about a mile into the air, screaming in terror the entire time. Other times I had been angry beyond the bounds of normal emotion when friends had done very little wrong. I had more than once told people I care about to go away, to not speak to me again, that they had chosen to hurt me just because they were mean and hated me and why didn't they just say they hated me, and everything was their fault. The first year and a half was really rough. I wound up leaving one job because too many bridges were burned. I spent much of my time in embarrassed tears over the things I said and did. But then I learned. I learned to watch what I said before I said it. I learned to use others to screen my thoughts and actions. And life became much easier.

I certainly never conquered anything. I still make bad decisions because of my illness. But I now know when I need to be careful. I know for a fact that I do not need to be defined by my illness, and that the only way it can define me is if I choose to not monitor what I am thinking of doing. I have taken a serious illness and changed it into something really annoying I have to live with, but something that is not dangerous.

Recently at work I brought up an idea to do group therapy with a few women who are being taken advantage of by another patient. The plan was to work through a workbook teaching them skills to better handle the pressure the other patient applies to get them to do what he wants. Most people were very supportive. However, one rather negative woman was very argumentative in team meeting. The only person who supported her was a friend of mine who had been supportive to my face, who commented on the inability of our patients to change.

If that's the attitude that has been in place for the 25 years this place has existed, and in most cases it has, then how on earth do they know? Now I must prove that change is possible, when in fact I don't even know for sure it is in this specific case. I do however know that other times they have acted as if change weren't possible and then been happily surprised when something improved.

This is the biggest frustration in my life and makes me want to announce over the PA that if change isn't possible then would someone explain what I'm doing every day.

There is ONE benefit

I live a pretty happy life, most of the time, despite being constantly frustrated by either my real limitations or the limitations other people assume I have. Many of the things I have in my life I would not have if it weren't for this disease and so I even can be grudgingly grateful for it. However there is also a side of me that is always wondering what I would have been like, what my life would have been like, without getting sick. I had many dreams that will never be fulfilled. Some were silly things, some were things that don't really matter, and some were huge things. Many were career related. I always thought I would earn a PhD, for example. I had it all figured out, what specialization I would choose, where I would go to school, and even when I had to start to avoid taking the graduate record exam a second time. (Once was plenty for someone who hates to sit still). At that point I was so sick that even thinking of school would have been ludicrous. I wanted to do research, as I really enjoyed that in school, and because receiving notification that an article I had written was accepted for publication was one of the most exciting days of my life. Again, that's beyond my abilities as I could never stay organized enough to gather data and use it appropriately. There were other dreams, and now I know that many will never happen. And I'm mostly ok with that because I have no choice, and because other things replaced those things in my life.

However every year at this time there is compensation. Every year I gather heaps of receipts and a calculator and settle in at the computer to spend my annual hours on TurboTax. Every year I get to the place where it suggests entering medical expenses and I laugh. You have to spend more than 7.5% of your income on medical expenses. That's never even close to a problem. So far I've blown that number away by $1200 this year and I still have at least $300 to add. In fact my counseling expenses alone cover nearly the entire amount and that's before my $700 of meds and co-pays for the psychiatrist and family doctor and the extensive labwork I have to have done 2 times each year or more, costing several hundred dollars. Nor does it include the special glasses I have to have thanks to side effects.

And so, for the entire year I have no money thanks to illness. But in a few weeks I will suddenly, gloriously, get the biggest tax refund in the world!

Why I am Just Me

My greatest fear in beginning this blog was that someone could figure out who I am. I still am afraid of this, and as I hope to be gaining readers I want to explain, as hopefully it will help others to respect this. I know that some people are very bothered by anonymous internet participants, but the circumstances of my life mean that if the wrong person found out about my life there could be ugly consequences.

The truth is that I was very conflicted about this, because I am tired of living in a world that requires we hide mental illness. The first few lithium prescriptions I filled embarrassed me more than anything in the world. I once had teenagers yell negative comments at me as I walked through the parking lot of the counseling practice I visit weekly. I discovered early in this journey that it is best when those around me know I am bipolar. This allows them to be understanding of my bad times, as well as letting them help me see when it is time to take an ativan or even a day off.

I have always told the people in direct contact with me at work. I told the company I work for at the time I started and they have always been accomodating to whatever I needed. People always respected my privacy. Then 2 years ago I had a new co-worker who responded to being told with a lot of prejudice and unsolicited and stupid advice. About a month later I had to go on disability leave. She decided that it was a good idea to tell everyone who worked in that facility. When I returned to work I had been back about 5 minutes when someone came up and insisted on telling me all about how her son was in the psychiatric unit and on antipsychotics after a bad reaction to antibiotics or something. I thought this was very strange as I thought people would know what I asked them to be told: the diluted truth, which was that I had an adverse reaction to a medication and it had taken a long time to leave my system. I later discovered that people there were going so far as to say things like "what does she know, she's crazy" in reference to me in the middle of large team meetings. I became a convenient scapegoat for anything they didn't like, because they were certain I had no ability to function in any capacity.

In the next few months people attempted to make my life miserable at that facility. The complaints went so far and my company got so tired of them because they were so obviously not true that they moved me out of that building. (I work for a contract company and at that time I worked in multiple places). The next day I was going to another place owned by the same company, but where nobody had ever complained about me at all. I was informed that the powers that be had decided they "didn't like me" and did not want me in their facilities anymore. They had no problems with my therapy skills or anything else, they just didn't want me. I immediately said this was because of my bipolar disorder and was told it wasn't. However, those people had a history of firing women with disabilities and there was even a lawsuit pending.

I was transferred, given a raise, and settled into a new facility where I did not let anyone know I was bipolar for many months. I thought about suing but simply didn't have the energy. Over time I was able to get my boss to admit that the whole thing had been about discrimination.

Ironically I could probably announce on the loudspeaker system where I work now that I have bipolar disorder and nobody would care. But I will never be open about it in relation to work again. And because the internet is the amazing place it is I need to remain anonymous here so that there is never any connection to me and my job.

Unmedicated is (not) My Decision

Recently I was engaged in quite a discussion on someone else's blog where they discussed someone doing something bizarre and said this showed they were an unmedicated bipolar. There was a discussion of how irresponsible bipolar patients are not to take meds.

I left a comment about WHY people with bipolar don't take meds sometimes. People tend to assume it is because because we want to be manic. Somehow the general idea is that mania feels good. This is what I thought too before I actually was manic. The truth is that mania can result in an elevated mood that sort of feels good (I have never really liked it for more than a day or 2, I find it frustrating and become angry with myself because I know I act strangely when manic), or dysphoric mania, which is what I typically have and which feels horrible. It is agitation and insomnia and thinking too fast to keep up with. Mania is forcing yourself to think about every decision. It is absolutely not fun. (It is true that other people do enjoy mania more than I, but few feel it is the ultimate best state. I think most who prefer it just prefer mania to depression. I actually would rather be depressed as at least then I get to sleep.)

Anyway, the truth is that it is very, very hard to take bipolar meds. Some are somewhat milder than others, but they don't work as well and if the symptoms are severe then the heavier duty meds are needed. Side effects are things like severe weight gain (for me about 70 lbs); destruction of the thyroid; kidney damage; liver damage (all of those are real enough threats to require frequent blood tests); hair loss; constant, severe thirst; infertility; serious sedation; over-control of the emotions so that it's hard to not feel bland (I choose this over poor control, but it means that I almost never cry, no matter what happens); significant hand tremors; incontinence; visual changes; and many, many more. I've been to the emergency room twice in 4 years with reactions to new meds.

I have a decent selection of those options as well as others. I continue to take my medications though because I know perfectly well what happens without.

I struggle to take them though. Not only do I deal with side effects, but I have a great deal of difficulty swallowing the pills and then keeping them down. I have forced down 15 pills or more and then thrown them back up--often up to $10 worth of medication--so many times I can't count. I have tried everything, but my stomach just doesn't like my meds. There was a long period of time where I threw up every morning. Every morning I arranged to be between patients at 10:30 because I could be certain to be kneeling in the bathroom gagging and hoping nobody had peed on the floor recently. For at least a year it took me 30-60 minutes/day to take my pills, struggling to swallow each one. Then I spent the next few hours struggling to keep them down.

During that time, the dark days of this illness, I had about a month I refused to take meds. I took some, but not nearly enough. But then I learned that I am incapable of lying about whether I'm taking them, and that my psychiatrist can tell. I think she smells guilt. Finally I realized I had to prove to her that I truly couldn't tolerate the meds I was on, which I did by taking them and throwing them up, over and over until she saw I truly couldn't handle it.

The meds are also incredibly expensive. In 2005 $5920 worth of pills went down my throat. I paid about $700 out of pocket. This is on top of paying for about $2500 of counseling and $600 of psychiatric visits. Not to mention various other medical expenses, most of them related to treatment of hypertension caused by medications. I am fortunate enough to have good insurance, a good job, and I can afford these things, although it means no luxuries, ever. Not everyone is so blessed.

These circumstances combine to make taking bipolar meds very, very difficult. I resent every pill I swallow, knowing it's going to make me fat, thirsty, tired, and nauseous. I have cried many times after throwing up $10 of medication and knowing I did not benefit from the effort of taking it. Along with that, it is very hard to have your life feel blunted. People always think bipolars quit taking meds because they want to feel highs. Well, as a bipolar who knows that she won't feel high if she doesn't take her meds, I can say that I don't want to take mine either. Sometimes crying or laughing without effort feel really good. Sometimes it feels good to have an appropriate emotional response to something, and while my responses are better on meds than off, on is not "normal" either. I remember normal. I miss it, and partly it's the meds doing this.

Many people seem to think it is the bipolar's responsibility to the rest of the world to take these meds. Or they think unmedicated bipolars clearly aren't making informed decisions. The truth is that I can understand fully how someone could choose to be unmedicated. For someone with less severity than I have, I can even see being envious. Some bipolar patients don't have symptoms a great deal of the time. I can't imagine how hard it would be to take meds if that were true.

Having taken most of the meds in some combination or another over the last few years I can say that I believe bipolar patients who are legally competent should have the right to try to live without meds. I think the decision should be made with a doctor's awareness and support when the person has been stable for a significant time period, and a support system should be in place to help resume meds quickly if a need arises, but if there is a good support system watching for problems, I believe it is fair to attempt life unmedicated.