After all the votes have been tallied, the winner for the worst year of my life is this current year, 2009. I would rather it be some year in the distance past of which I only have a few vague memories, but this year has won the title of the worst year of my life by far. The cause of my bad year might be many interconnected factors, all of which began with my insomnia.
It was earlier into January when I started having difficulty sleeping. In the past I was taking Abilify and Risperdal (both antipsychotic medications), and the Risperdal was fairly sedating; I would sleep about ten to twelve hours a day. When I went off the Risperdal early in 2008 (I think), I started having an increasingly difficult time sleeping, and by January of 2009 I was only sleeping about four to five hours a night. This trend of getting less and less sleep continued to the point where for the past six months or so, I have been getting only two to three hours of sleep a night. This is clearly not enough to stay healthy, physically or mentally.
At the same time, I began gaining weight very rapidly. So rapidly that I began to suspect I had Cushing’s disease, which is caused by a cortisol-secreting pituitary tumor and is characterized by a specific pattern of extreme weight gain. I had many tests done, and finally saw an expert in Milwaukee, WI. The tests did show I had elevated cortisol levels, but the expert thought it was likely caused by my mental illness instead of a pituitary tumor. If it were the tumor, one could excise it and the problem would be solved; if it were the mental illness, then I would be out of luck. It turns out my elevated cortisol levels were caused by my mental illness, so there is really nothing I can do about it.
Also during this time, my mood plummeted. I had very low mood (possibly even to the point of clinical depression, though I’m not sure it got quite that bad) for month after month. My misery seemed to be caused more by my situation in life than a chemical imbalance though, so I didn’t go on any antidepressant medication. Throughout this time I was very suicidal.
Taking this all into account, things have not been good this year. But the year is not over yet, and I am going to try to turn things around so that by the start of 2010, I will hit the ground running on a good path.
The first key to turning things around will be to start sleeping again. As I mentioned in a previous blog, I was prescribed the antipsychotic Seroquel to help me sleep. Well, last night I took the medication for the first time, and I slept a total of eight and a half hours, waking up only once for a half an hour around three in the morning. Even today I have felt tired because of the new medicine, so I think this is going to work out fabulously. I have to note, however, that Seroquel is associated with weight gain, and although I’m concerned about this side effect, I believe that if I’m sleeping more the rate at which I’m gaining weight will slow (or hopefully stop altogether). Time will tell.
I also believe that if I’m sleeping more, perhaps my mood will improve (my mood is already improving, though it started before the Seroquel, so maybe the addition of the med will just help even more) and I will be more motivated to be active, thus losing some of this extra weight.
This year has been a learning year. I have learned a lot about myself—what my limitations are and how I can best deal with this illness. And like much real life education, it wasn’t pleasant. I suppose this new knowledge is the redeeming element of this year. Sadder but wiser. Please don’t misunderstand me though, for I’m getting by all right now. Getting to this point has been a major struggle, but I’m already on the right path, ready for the next stage of this crazy journey.
I had an appointment with my psychiatrist earlier today. He was quite pleased that I have started to feel a bit better, and still thinks I’m doing absolutely fabulous in terms of dealing with such a tough illness; I have to agree. The appointment lasted about forty-five minutes, and by the end, we had both agreed that I should add another medicine to the mix as a sleep aid.
Not sleeping has really been hard on me. Since last January, I’m averaging about two and a half hours of sleep per night (no, I’m not manic). In the same time I have gained an incredible amount of weight. But the worst part of insomnia is the boredom. But now that I’ve added another med, this time the anti-psychotic medicine Seroquel, I hope I will be able to sleep more. Hopefully I will get this prescription fill this afternoon.
Well, it is the middle of the night right now, so I will try to get back to bed. I just wanted to let my readers know the latest on my medication regimen.
From the time I started receiving treatment for paranoid schizophrenia up until recently, my motto has always been to strike when the iron is hot. The significance in my life of that old adage is that I never know for how long I will stay healthy (the course of this illness is undulating), so I better get as much productive work and play in while I’m feeling well; however, this has not been working out very well. Instead, I have come to realize my need to play it smart and pace myself. Pacing is the key to surviving schizophrenia.
After a lot of deliberation and self-analysis, I found that I’m disabled from some things but not everything. While it might be incredibly difficult to do manual labor or repetitive tasks, I can think on a deep and creative level quite easily. It seems I’m most disabled from entry level jobs, but I could possibly do the work at a higher up level, where there is more contemplation. Of course, no one starts at the top, so I find myself in a difficult position. But I reasoned that if I could get through college and finish up my degree, perhaps I would be able to do the entry level work after all (I am healthier than I was years ago, though it looks like I’ve reached a plateau). Accordingly, this fall I enrolled at the University of Minnesota to finish up my undergraduate degree in hope that the degree would springboard me into a career. I went into school guns blazing, but I ended up shooting myself in the foot.
You see, I was healthy at the time I started school, and because of my newly improved health, I decided to strike when the iron was hot. I went for too much too fast . . . and that was only taking one course (okay, so I had originally enrolled in two courses, but dropped one before even going to a single class). I pretty much knew immediately that it was too much for me to handle, but because I wanted it so desperately I continued to attend longer than I should have. Even after the very first day of school I had started to hallucinate, which I hadn’t done in about a year prior – not a good sign. While I was in school, I was having a terribly difficult time sustaining my attention and concentrating. It made sitting through class feel like a living hell. Many have said I could have just tuned out the professor and sat through class, but that wasn’t a possibility. For whatever reason, it is impossible for me not to pay attention to what is going on . . . it might be that my brain is structured that way, or else it could be because I’m generally on “high alert”, or both. I don’t know what it was, but the cognitive problems I was having in class made it impossible for me to go to class, and the stress of the deadlines was enough to cause me to have increased positive symptoms. So I had to drop out of college once again. I tried to strike when the iron was hot and I refused to pace myself.
But attempting to go back to school wasn’t a waste. I now have a better understanding of my limitations. What this means is that even when I’m feeling great, when I’m healthy, etc, I am not going to over-expose myself to higher stress levels than normal; the setbacks I get from over-exposure to stress are just too harmful to my wellbeing. This is especially true because I have a tendency to have suicidal thoughts after setbacks.
There is one problem though: because I’m trying to live my life with slow improvements that are sustainable over the long term, people look at me and my life and assume I’m taking no actions to better my situation—such just isn’t the case. If I’m unhealthy and doing little to nothing, no one bothers me about not achieving, but when I’m healthy and doing little to nothing, everyone seems to have to point out to me how lazy I have become (FYI: it isn’t laziness anyway, it is a negative symptom of my illness that is experienced as a lack of motivation). It is the long term that concerns me and overall I have been making some slow progress; in the beginning of my treatment I had done nothing, and now, about five years after the diagnosis, I have written a book, given many speeches, started a church ministry, and helped numerous people. It only appears I’m not making progress because it is slow progress. In the past I was dismayed about the slow pace of things, but now I’m realizing that is absolutely necessary.
The best advice I can give someone right now is to take your time. Just relax and take it easy. There is no point in rushing because it will only backfire on you as the stress mounts and the symptoms come cascading back again. Relax. You will be able to do something purposeful. You will have a meaningful life. It will just take time. Be the tortoise and not the hare—slow and steady wins the race. And who knows, maybe after years and years of struggling through the long race, you will find yourself an “overnight” success.
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The stigma of mental illness is the branding of shame or disgrace that goes along with the illness. A better name might be prejudice. The most effective way to reduce the stigma of a mental illness is for normal people to have personal contact with the mentally ill. Stigma is a real issue, one I have been up against many times. It is especially pronounced in the reactions I get in trying to date. Despite the serious and real nature of stigma, I’m finding that I’m having an even larger problem when interacting with normal people. The problem is not with stigma, not with their prejudice; the problem is with me.
I have come to realize that the symptoms of my illness and the associated disability are causing the undesirable outcomes I have in interacting with normal people. It is difficult for anyone to make friends, I realize that, but due to my illness I am slightly awkward in my interactions with people. People are selective with whom they choose to spend time, and my illness causes me to be socially awkward enough that it tips the scales against the formation of new friendships. The same effect is at play in romantic relationships, but for me and many with mental illness, there is an even larger, hindering factor. That factor is the lack of a steady income.
Ignoring other obvious factors that prevent relationships, e.g. my morbid obesity, I find that women are not attracted to men who have no source of income. This is not necessarily conscious, but it is at the root of many of my problems in dating. Women know there is no future with chronically disabled men, as they cannot help provide for a family and are more likely to be a financial burden than anything else. This knowledge translates into unconscious attraction patterns that preclude me from consideration, as I haven’t a steady source of income.
While I would like to be able to say this is appalling and egregious, I completely understand such a thought process; there are real needs in life; the women are not to blame. I have a lot to offer a woman. I do. And still I wouldn’t date me if I were a woman. There is more to a relationship than romantic infatuation, and I can’t meet a woman’s needs – at least not right now. I’m continually making career efforts in hopes that someday I will be financially stable enough to be considered for a relationship and judged on other factors.
In the meantime I must battle my loneliness at every turn. And at the moment, it is a battle that I’m losing.
Correction from previous blog: the bipolar boy did not come at the police with a knife; instead, he was holding a knife to his mother’s throat.For the past week I have been staying with my parents in Las Vegas. It wasn’t so much a vacation for me as it was an effort by my parents to supervise me. They had planned long ago to spend a week in Nevada, but since I have been doing so poorly lately (including suicidal ideation) they thought it would be best not to leave me all alone in Minnesota. While I was here I read in the paper about the shooting death of a teenage boy with bipolar disorder. Apparently he came at the police with a knife, and the police opened fire. The boy died.
The facts of the incident were not in dispute, but the mother of the boy said less than lethal force should have been used. It is a tragic incident, and upon thinking of the situation more, I wish the advertising slogan were true – what happens in Vegas, stays in Vegas. Unfortunately, such tragic confrontations between the mentally ill and law enforcement are found everywhere. Due to my recent hopelessness, however, my initial reaction to the incident was not outrage; I simply wondered if it were for the best (was it a suicide by cop?).
Life with severe and persistent mental illness is often too difficult. Even though I’m quite healthy and high functioning, sometimes I desire death. At least I do on the dark days, and I have had quite a few of them recently. It is a shameful thought, but I’m confident that everyone with SPMI could fess up to having such thoughts at times. But I don’t want to dwell too much on my own misery. All in all, this trip to Las Vegas has been good and it has served its purpose and beyond. I am still alive, and it seems that I’m finding more hope and enjoyment in life.
Technically, I am still a member of the board of directors of the Barbara Schneider Foundation (BSF). I say technically because I haven’t been to a board meeting in about a year, but I am still on the roster. BSF is a nonprofit organization that advocates and facilitates specialized training for law enforcement and corrections officers to better equip them in dealing with the mentally ill. Officers who have undergone the specialized training form teams called Crisis Intervention Teams (CIT) that respond to mental health related calls, including dealing with people who are manic or psychotic. Typically, law enforcement personal are taught to escalate the use of force up until the point of compliance by the involved civilian. The idea in CIT is to deescalate crisis situations in a way that doesn’t involve the escalating use of force, because escalating force is not particularly effective with those who have mental illness.
For instance, imagine a man with schizophrenia who has become psychotic with paranoid delusions about people trying to harm him. Then imagine a police officer barking commands at the paranoid individual while escalating force. Suddenly, the officer is unknowingly playing into the individual’s paranoia, thus provoking a confrontation that threatens the safety of both the individual with schizophrenia and the police officer. Due to the illness and the officer’s typical escalating force approach, the two are pitted against each other, often with tragic outcomes.
The formation of CIT is a good step forward, but it is only a band-aid on a large gash. There needs to be a way of limiting the number and severity of relapses into mania and psychosis, if not preventing them altogether. Officers are often called in to clean up the mess, but it is really an entire, well-functioning mental health community that is necessary to help a mentally ill individual and prevent crisis from occurring. Preventing relapse would be like hitting a jackpot, but since the issues involved are complicated and expensive, I think the odds of success might be better here in a Vegas casino.
