the cost of bipolar

I’ve had bipolar disorder since I was a pre-teen, and the costs of my illness have been eye-opening. I have lost educational opportunities and had instability in my career, resulting in a loss of many tens of thousands of dollars over the years. There have been the financial costs due to unnecessary purchases and moving to different places. There are significant costs for ongoing mental health treatment. I have lost or damaged several important relationships, and I nearly lost my life on a few occasions.

There are also the physical health costs associated with bipolar disorder. There is the weight gain associated with the meds I take, which causes me problems such as high blood pressure, the potential for heart disease, and lack of mobility. I have sleep problems, decreased libido, and ongoing gastrointestinal problems, all of which decrease my quality of life. Bipolar medication may one day cost me my intellect, if the potential for early dementia becomes a reality (I wrote a previous post about memory problems).

My bipolar has inflicted harm on the family as well. My wife has stayed with me despite over 30 years of instability and unpredictability, and it has cost her emotionally, including unhappiness, fear, and anxiety. She had to be responsible for raising the kids while I was unable to help due to my illness. She has felt like she has to work harder to make more money to pay for the medical bills (she doesn’t at this time), so she continues to work at a physical job and often has debilitating aches and pains.

My son and daughter grew up in an unstable home where I wasn’t mentally present for long periods, which in my opinion caused ongoing mental health issues. My son has battled depression, but seems to have dealt with it pretty well. My daughter has been diagnosed with bipolar, schizoaffective disorder, and anxiety disorder. Her illness has cost her most of her friends, dreams of a normal life, two potential career paths, and many thousands of dollars in medical bills. She struggles with emotional issues in addition to her other physical and mental problems.

rear view

I was looking back at my posts from early 2021 that followed the arc of a long manic episode. The posts from that time aren’t scary like some of the deep depression posts from the old blog, but they are interesting to me.

My episode started with the side effects of starting on Latuda in November of 2020; I felt pretty good for a few weeks, but I started climbing the hill in December. By January 2021, I was frequently staying up in the middle of the night, my anxiety was climbing, and my OCD symptoms became overwhelming. I couldn’t concentrate at home or at work, I was having panic attacks, and I almost left my job out of frustration. After quitting Latuda and returning to Abilify, there was a long downslope where my symptoms were decreasing steadily, but were still there. I was afraid something had permanently changed in my brain. It wasn’t until May when a solo mini-vacation brought some relief from the storm.

Looking back from a year later, I am reminded how much I was struggling. This manic episode seems odd because on one level I knew what was happening and how dangerous it was, but at the same time I was very much caught in its uncontrollable grip. I didn’t think I could fly, but I believed that my life would be better if I tore everything down at work and at home. Had I followed through with my late-night schemes, it could have damaged my family relationships, cost me tens of thousands of dollars, and jeopardized the continued treatment for myself and for Nicole. I think I escaped the episode just in time, because I don’t know what I would have done if I had remained manic for a longer period.

My bipolar experience has been mostly depression, with very brief manias or mixed episodes followed by a deep spiral. This episode was different in that it had a long buildup and a long letdown, and I didn’t crash in the same way I had in the past. Since that time I have had no mania and a few depressions, and not with the abruptness and intensity as in the past. I know mania will happen again in the future, but I think having been through this most recent episode makes me better equipped to deal with it.

broken

You can only beat your head against the wall so many times before you crack, spilling your hopes onto the floor. You struggle to pay the price of existence, and the costs are staggering. Damaged and broken, you barely survive the day, and get no relief from a fitful sleep before waking up again. The cycle of hopelessness is not a circle but a downward spiral, a black hole from which positive things never escape. Your carefully constructed life is shattered by a disease with no empathy. The beast is not satisfied until its victims lie on the floor, crushed by its destructive power.

inadequate

I don’t feel like I’m good enough for anyone – not as a husband, a father, a son, a friend, or a worker. I’m not good enough for my own standards of what I want my life to be. I feel like I let everyone down on a consistent basis, and that I’m not trying hard enough. I’m just a substitute until the right person comes to replace me, and they will do everything better.

I define my self-worth by how useful or helpful I am to others, and right now it seems like I’m not useful or helpful to anyone.

Sometimes you just have to face reality, and my reality is that no matter what meds I take, they can’t change the fact that I’m just not wired to be a happy, successful person. I want to be that guy, but I can only fake being that guy until I can’t fool anyone anymore.

thanks for the memories

My daughter and I both have memory problems, and I believe they are directly related to bipolar disorder. We were talking about this recently, and she said she has forgotten lots of things, but it also feels like she never made the memories at the time; there is simply nothing there to remember. I never thought about it that way, but when she said that, it completely made sense.

I’ve given this more thought since that conversation. Looking back at what I remember and what I’ve forgotten, it seems like my ability to make and retain memories correlates to how severe my bipolar mood swings were at the time, and the depressive moods in particular.

I remember some of the depression “highlights” over the years, but during the times I was severely depressed there seem to be large blank spaces in my mind. School happenings, kids’ milestones, and my own work life just blend into a grey fog. I also have some memorable manic or mixed moments, but I seem to remember mental images from those times rather than the context of what was happening on either side. These memory snapshots don’t do anything to help me remember the life events surrounding the moments I do remember.

The memory loss feels strange, but just as odd is my ability to retain many events from times when I was alone. For example, I can remember locations I delivered or picked up from while I was a truck driver. I can remember places I’ve been hiking or exploring or just driving around by myself. I can remember vivid details about places I visited many years ago. In addition, I can remember lots of useless information and trivia (people always told me I should try out for Jeopardy, but I never wanted to).

My memories are often triggered by something else, whether it is music, a photo, or a geographic location. If I can associate a moment in time with a particular song, I will remember it for many years. For example, I recently listened to some music by Wham! for the first time in a long time, and it triggered a memory of driving through the Sierras in the dark when I was 18. A Hall & Oates song reminds me of a railroad crossing on a main boulevard in San Jose. A Tears For Fears song reminds me of a girl I liked in 9th grade, but also specifically of one part of a highway in Sacramento when we were on a school trip together.

I guess the part that bothers me is that I don’t know what is normal and what is not in my bipolar-addled brain. I think most people make memory associations from photos or music. I realize that normal people don’t remember everything about their lives, and usually just the highlights are what they remember. But I don’t think people typically have long years of time where they forget virtually everything. People have told me I had a great memory because I can tell them obscure details from events long ago, but I feel like my memory is getting worse all the time. I don’t know if it is caused by bipolar brain chemistry, long-term effects of psychotropic drugs, or early dementia coming on.

i want a new drug

I want a new drug
One that won’t make me sick
One that won’t make me crash my car
Or make me feel three feet thick


I want a new drug
One that does what it should
One that won’t make me feel too bad
One that won’t make me feel too good

Huey Lewis and the News

I’ve been taking this new drug Vraylar for over 2 months now with good results. I have had very little depression since increasing the dosage last month. I feel like I’m right on the edge of being a little hypo most of the time. Maybe that’s how “normal” people feel all the time: positive, capable, resilient, and alive.

I’m a little unsure of how to take this new feeling. Only time will tell, but for a change I feel a little bit of optimism about my treatment. I’m apprehensive in thinking that I’ve really found a solution, and that it will last. I wonder if I have become so accustomed to depression that I simply accept it as how my brain is wired without having hope that things can change.

Unfortunately, this drug is under patent and is expensive. Under my prescription plan, a 30-day supply would have cost me over $300. The manufacturer has copay cards which cover that cost for a limited time, so I paid very little for now. However, my plan’s maximum annual out-of-pocket is about $1000, which is a lot to pay when the discount card runs out.

It sucks that a drug this effective is out of reach financially for many people, but I’ve finally found a combination that works. I understand that the drug companies spend many millions developing new drugs, but they make huge profits when a drug is successful. Maybe that covers the costs of the unsuccessful drugs, but when company executives make tens of millions of dollars per year it seems hard to justify that level of profit. I don’t know what the solution to that problem is.

the weekend update

Job update: I found out who was chosen for the job I interviewed for. She has no field experience and no design experience, but she was well known by the hiring manager. I was lied to, because I was told by that manager that they wanted someone with more field experience. I think I didn’t get the job because they didn’t know me personally and because I’m a middle-aged white male. I hate to be that way, but that’s the company culture. It’s not what you know, but who you know. I wasn’t bitter before, but I’m a little salty now.

Psych update: I saw the p-doc this week and told him I wasn’t having mood swings, but I’ve had a pretty good depression for weeks now. In addition, the Abilify makes me want to eat everything in sight. We are going to try a newer brand-name drug, Vraylar, because it treats both depression and mania, and weight gain is much less common. Hopefully I will have some good news to report.

Mindfulness update: I’m going to tell the therapist I want to concentrate on some other method of treatment. I’ve lost interest in the book, I can’t seem to get started on the exercises, and I don’t believe it will work for more than a few moments. What I need is to find a way to fight the social anxiety enough that I can actually exercise without thinking that everyone is looking at the fat guy trying to exercise.

Baseball update: I’m hoping the Giants can win today so they don’t have to play in the wild card game. I also hope the Cardinals beat the Dodgers in the wild card game. Fuck the Dodgers. If the Giants get to the World Series and lose, I’m afraid I will go into a deep depression like I did in 2002. It sounds silly, but I feel like I’m in a precarious place right now, and all I need is a trigger to push me into a spiral.

out of touch

I have been so busy in the past couple of months that I haven’t had time to think. Maybe that is a good thing, but I feel like I’m out of touch with myself. I’m not taking my emotional temperature, thinking deep thoughts, or working on feeling better. I’m not doing anything to improve my state of being. I’m just standing in place, waiting for the next storm to come through and buffet me with fear and self-loathing.

I don’t like my house anymore, but there’s nothing wrong with it. I don’t like my conservative friends or family, but they aren’t bad people. I don’t like my job, but it’s the best one I’ve had. There comes a point where I start hating everything and everyone and I start making changes just for the sake of changing things. I move to a new place, change houses, change cars, change jobs, change clothes, discard some people and meet others. When the dust settles, I realize I’ve changed nothing, because the one constant in my life is me.

I feel so damaged and defective right now. I am unable to solve my problems, or even some of them, and therapy isn’t helping. I can’t solve other people’s problems either, even though I keep trying. There is no one here who can cast a spell to keep the dementors away.

Ugh. Excuse me while I wallow for a while.

deleted [TW]

[This poem was written in the middle of the night when things were pretty dark and I was very unstable in February this year. I don’t feel the same way now, at least not in the stark and unflinching way as when I wrote this. I always think about death, no matter how light my mood is, but I rarely have concrete plans.]

If you are feeling hopeless and suicidal, please reach out to people or to a hotline. Depression lies to you. You are worth something to someone, and you will be missed forever.

TRIGGER WARNING – suicidal thoughts, death, hopelessness

 

 

 

 

memories I’ve deleted
wisps of smoke in the wind
disappearing vapor trails
something that was but is no more

people I’ve discarded
empty shells of flesh
devoid of substance and spirit
their essence is gone

places I’ve deserted
vistas left unseen
towns without a name
the spaces left behind

delusions I’ve denied
blind faith in gods
belief in myself
things that no longer matter

deleted
discarded
deserted
deluded

nothing to forget
no one to care for
nowhere to call home
nothing to believe in

maybe someday
I’ll delete myself

behind

I’m playing catch-up this week. I’m way behind on work projects, on reading blogs, on writing, on projects at home, on planning for the future, blah blah blah, yada yada. I made some progress on work stuff this week, so I feel a little better about that.

I also got my second vaccine shot, so I am fully juiced and ready to go. I’m ready to lick door handles and have someone cough on my airline food as I travel to a crowded city. Okay, maybe not, but I do feel more at ease knowing I have a little protection. I can see the possibility of everyone requiring a booster sometime in the next 12 months (I guess Pfizer has already indicated this). I was sore at the injection site until yesterday, and I was tired and achy for about 48 hours after the shot, which was about what I expected. Nothing serious, and I didn’t miss work.

I also saw my psychiatrist this week. I printed out part of this post and let him read it, and he said it was textbook OCD. (I also told him his “How are you doing” forms are crooked on the paper, and it mildly bothers me.) He said we can work on the anxiety first, and then see if the OCD symptoms need more attention. I agree with that, since the OCD gets worse with higher anxiety. In addition, he said I was much more stable when I was taking Abilify, so maybe we should go back to that. I had the same thought previously, so I told him that was fine. I’ll just have to eat better and get more exercise somehow. I’m also going to quit the Wellbutrin, since it can cause instability and maybe anxiety.

Last week I met with the therapist for the first time (same office as my p-doc). We got to know each other a little, and he was interested by some of my problems (social anxiety, lack of self-esteem, avoidant tendencies, inability to deal with stress, etc.) He said something that bothered me though: when I was explaining about being overwhelmed at work, he didn’t seem to accept the reality that I absolutely cannot take a week or more off work for my mental health right now – maybe an occasional day or two, but not an extended period. I also don’t feel like I can ask to have some work shifted to other people, because everyone I work with is swamped and unhappy and drowning in projects. The day after he suggested I ask for less work, I received two more projects. Yay. We’ll see what he has to say on Monday.

The weather is cool but nice, so I am going outside to enjoy some nature and not think about life for a while. But first, I need Second Breakfast (the best meal of the day).

running to stand still

Up. Down. Sideways.

Hopelessness. Defiance. Acceptance.

Spinning wheels, hit the brakes, stuck in first gear.

Restlessness. Depression. Mania. Fear. Anxiety. Psych meds with a whiskey chaser.

I don’t have a center right now. I can’t find balance. My brain is all over the place.

My doctor called me back tonight, and he is going to try a couple of things. My faith is wearing thin.

Work piling up, waiting for me to stop feeling overwhelmed and make my brain work properly. The forecast doesn’t look good for that at the moment.

I’m also calling a therapist tomorrow. Without help, I’m a train wreck waiting to happen, and I can’t crash right now. Actually I can’t ever, but that’s another discussion for later.

panic! at the home office

So Friday afternoon I may have had a little panic attack. Apparently I posted something here and then trashed it immediately. Then I started drinking.

I was trying to email a request form to someone for a project, but I didn’t know just what to say. But I got stuck thinking about it, and it never got sent. Then the 10 am department meeting happened, and the department manager started demanding more output than we have been producing lately. Just what I needed to hear. After the meeting, I froze up again.

I took a long lunch, thinking I would take a break and calm down, then get back to work. The getting back to work never happened, and instead of producing more, suddenly I’m producing less. Thinking about this made me start freaking out, and I gave up around 2 pm. I literally got into bed and covered up hoping I could calm down, but it just got worse. I briefly thought about calling my psychiatrist, but I don’t think I could have made it through the phone call, and I didn’t want to get sent to the hospital involuntarily.

So when my shift ended at 3:30, I poured a glass full of scotch whiskey and started drinking with the intent of knocking myself out as quickly as possible. After an hour I was successful, and I slept until about 8 pm.


I fear the manic episode from January has permanently damaged something in my already defective brain. I can’t organize tasks, I can’t follow through, I can’t regulate my mood, I can’t control the anxiety. I can’t stop thinking that I will no longer be able to do my job, and that I will have to find something less stressful for much less pay and worse benefits.

Before the manic episode I was relatively unhappy at work but I was able to cope with the stress and managed to produce work in a timely manner. Now I am completely unable to deal with my mental state. I have no coping skills; I have nothing in the toolbox that I can use to improve my situation. My fight-or-flight instinct has been engaged, but I have nothing to fight with. The urge to flee is overwhelming.

The only thing that helps me relax is when I am doing something new, like yesterday when I drove new roads for a few hours and walked at a park for over an hour. But there are only so many roads within a reasonable distance, and I can’t do that every day. Eventually I have to come back home to my life, and start thinking about everything again.

I will call my doctor on Monday when I am relatively calm and explain the situation, and see if he can recommend something.

instability

I’m used to my brain throwing curveballs now and then, but since the most recent manic episode something seems to have permanently changed for the worse. I’ve lost whatever stability I had in the previous year, and it has been replaced by rapidly changing highs and lows.

Since quitting the Latuda, I have had significant OCD and anxiety problems (see this previous post). I started taking Klonopin a week ago, just a small dosage, and I don’t think it has helped very much. Most days I have been edgy and frazzled, like I am just barely in control of things.

I have slept okay some nights, then not so much on other nights. There have been a couple of days where I was so tired I was falling asleep at my desk (one benefit of working from home). I had to nap during my lunchtime to feel better. Then I wasn’t tired at bedtime, and I had to self-medicate with a little whiskey to fall asleep.

On two days this past week I have been so wound up at the end of the day that I have to get out of the house. I ended up driving about 2+ hours both times. Friday night I just had to get on the freeway and go fast; yesterday I wandered aimlessly through Amish country before finding a freeway and coming home.

Another thing wrong with my brain is my reaction to caffeine. Apparently I can only drink decaf coffee, because when I have regular coffee the tics and shakes increase within an hour. Soda seems to have a lesser effect, but I still feel it. It fucking sucks because I love coffee, and decaf usually tastes bad.

I’m glad I am dealing with this now and not at an office full of people (another benefit of working from home). I don’t have to hide my daily roller-coaster from everyone and pretend to be “fine”, whatever the fuck that is. My wife knows I am abby-normal right now, and she’s concerned, but is mostly just trying to stay out of my way. I have been telling her I’m not in any danger, which is true.

I don’t want to admit it, but maybe I should go back to the meds I was taking six months ago and see what happens. I was stable, I was sleeping, and I felt like I was mostly in control. However, I was depressed most of the time, so that wasn’t good. Now, I’m just feeling exhausted and hyperactive at the same time.

Sorry if this is rambling; I’m just spewing this out and not editing at all. Just like my thoughts right now. It’s bedtime, so I’ll see if I can get some sleep. Bye for now.

tics

I’m not talking about blood-sucking arthropods, but the little movements and rituals that are the major symptom of OCD or maybe Tourette’s. I’ve had little tics and quirks since I can remember, but usually they were only present during stressful times. The rest of the time, they didn’t have control over me and I could ignore them.

During the most recent manic episode brought on by taking Latuda, I started having uncontrollable “tic seizures” where I would be lost for seconds to minutes at a time, then only by force of will could I stop them for a few moments. I could maintain calm stillness if I really concentrated (which is the opposite of being calm), but eventually I would surrender to the urge.

I tap or flick things repeatedly with my fingers. I blink my eyes forcefully, way more than necessary. I blow air on my fingers. I tap my mouse on the desk over and over. I click my teeth. I scratch my chin or my head. I wiggle my feet or my toes. All of this is fueled by the need to “get it right” – the right sound, the right amount of force, the right number of times, or the right rhythm. If I don’t get it right, I feel like I have to keep doing it until I succeed, and I never do. These rituals are not involuntary, I’m doing them purposefully and I’m fully aware I’m doing them.

I quit taking Latuda two weeks ago, and my psychiatrist tells me it should take no more than a week for the drug to wash out of my system, but the tics remain worse than ever before. I find them in control much of the day, every day, and only when my brain is fully occupied can I really prevent them from happening. I have had difficulty with concentration and focus over the past year or so, and when my mind is spinning or drifting, the tics are more difficult to control. They get worse with stress, and my anxiety is feeding them. They get worse with caffeine, which is bad because I need my coffee in the morning.

Between the manic episode and the increasing control of the tics, It has been mentally exhausting for the past three weeks or so. My work is suffering, and because I am working remotely it is too easy to take time away from the computer to try to relax. It has been difficult to work a full day every day, I am taking too long on projects, and I am struggling to meet deadlines. After work I just want to drink myself to sleep, but I have (mostly) avoided that so far.

My p-doc wants to put me on Klonopin or Ativan to calm down a little and hopefully reduce the tics, but my employer’s safety requirements and drug policy might be a problem. We are randomly tested to federal standards for opioids, marijuana, PCP, cocaine, and heroin. In addition, I’m not supposed to take any drug which might affect my “ability to perform” safety-related tasks. Klonopin is on that list, so if I do take it, I have to demonstrate to the safety police that it doesn’t affect me during work hours. Hopefully I can work with the company on this problem. I won’t ask my p-doc to be untruthful, but I wonder what will happen when they find out I have bipolar and anxiety disorders.

I don’t know if the manic episode or the Latuda triggered something in my defective brain, but something has changed, and I hope the effects are not permanent. I’m actually concerned for my future because of this. I am worried that my mental health problems will cost me the best job I’ve ever had, and send me into an uncertain future of trying to find a new job at my age. I’m not that old, and I can do good work when things are under control, but age discrimination still exists. I hope I’m just overthinking everything.

In the meantime, I’m exhausted, and I’m struggling.