A Day With: Schizophrenia

Living with schizophrenia is tricky: my daily environment contains landmines, some of which I know the location of (triggers) and some I don’t. For me, the goal is to avoid those landmines and live the most successful life I can.

The sacrifices we make on a daily basis to achieve an environment where we eliminate as much stress and uncertainty as possible requires us to live by a relatively rigid routine. Most mornings I wake up around six, make coffee, make a blueberry, banana, spinach, and yogurt smoothie so I can take my medications with three hundred calories. We eat dinner at approximately the same time every night (around six) so that I am taking my medication twelve hours apart, again with at least three hundred calories of food. We often turn down dinner and happy hour with friends because many people schedule dinner later than my need to eat, or if we do go, we are the odd ones out having already had our meal. Another daily sacrifice is one that involves writing. I read essays, books, and articles throughout the day, and frequently disagree with what I have read, but feelings of paranoia often prevent me from taking a public stand on many issues that other writers could easily address. One time, I wrote about my sense of outrage at a gaming company for creating a video game that “simulated” schizophrenia (I don’t consider it fun or entertaining to have a mental illness). I had to take the post down after only two hours because I was so paranoid that the company would come after me. My voice is severely diminished and often silenced because of this type of fear. Anxiety and paranoia are two of the most prominent symptoms that I navigate and try to control. But I also struggle with a daily lack of motivation and a desire to isolate socially. During the worst periods of my illness, there are auditory hallucinations (hearing voices), tactile hallucination (touch), and visual hallucinations along with complicated and disorienting delusions. These symptoms are the most severe symptoms of schizophrenia and can be the most bothersome to people who are medication resistant (which I am fortunate not to be at this time). I approach living with schizophrenia the same way I would treat any chronic illness: I take my medications, listen to my doctors, and make life choices to create the least likely possibility of having a flare up. I don’t see my illness as any different from someone who has to watch what they eat, exercise, take insulin or blood pressure medication, and reduce stress where possible. Many of us have circumstances that require attention and care and force us to make sacrifices. Mine happens to be schizophrenia. I know what it is like to live with a severe mental illness, having maneuvered the landmines for decades. And because I know what it looks like, if I had to choose one disease over another, I would probably stick with schizophrenia because it is familiar and even with the worst of the symptoms, I have carved out a life I can celebrate, share with others, and enjoy.

There are occasions when I am at home, reading, writing, or on social media and the same sense of discomfort or anxiety will overwhelm me. Although I try not to disturb my husband at work, it is often necessary to call on him under “emergency circumstances” to come home, ensure that I take medication, and ride out the worst of the situation with me. These occasional instances are part of the reason we strive to create an environment of low-stress and wellness at home. The sacrifices we make on a daily basis to achieve an environment where we eliminate as much stress and uncertainty as possible requires us to live by a relatively rigid routine. Most mornings I wake up around six, make coffee, make a blueberry, banana, spinach, and yogurt smoothie so I can take my medications with three hundred calories. We eat dinner at approximately the same time every night (around six) so that I am taking my medication twelve hours apart, again with at least three hundred calories of food. We often turn down dinner and happy hour with friends because many people schedule dinner later than my need to eat, or if we do go, we are the odd ones out having already had our meal. Another daily sacrifice is one that involves writing. I read essays, books, and articles throughout the day, and frequently disagree with what I have read, but feelings of paranoia often prevent me from taking a public stand on many issues that other writers could easily address. One time, I wrote about my sense of outrage at a gaming company for creating a video game that “simulated” schizophrenia (I don’t consider it fun or entertaining to have a mental illness). I had to take the post down after only two hours because I was so paranoid that the company would come after me. My voice is severely diminished and often silenced because of this type of fear.

I am fortunate because I have a spouse who is compassionate, patient, and supportive, but it would be a lie if I said we didn’t make daily sacrifices to ensure that I have the best chance possible of not being overwhelmed or lost to the various symptoms of my illness. Some sacrifices are intermittent while others frequently occur; for example, my husband loves to travel, and although I love spending the night in hotels and visiting other places, I am at my best at home. Out of necessity, my husband and I have learned to avoid early morning flights and begin road trips after eight or nine in the morning. When I can’t follow my morning routine, I run into problems. By problems, I mean anxiousness—a general feeling of discomfort where I can’t sit still, focus, or concentrate, and it often leads to panic. Without the assistance of an increased dose of medication during these times, I’m unable to calm down. We travel less than we might prefer because of these difficulties.

Anxiety and paranoia are two of the most prominent symptoms that I navigate and try to control. But I also struggle with a daily lack of motivation and a desire to isolate socially. During the worst periods of my illness, there are auditory hallucinations (hearing voices), tactile hallucination (touch), and visual hallucinations along with complicated and disorienting delusions. These symptoms are the most severe symptoms of schizophrenia and can be the most bothersome to people who are medication resistant (which I am fortunate not to be at this time). I approach living with schizophrenia the same way I would treat any chronic illness: I take my medications, listen to my doctors, and make life choices to create the least likely possibility of having a flare up. I don’t see my illness as any different from someone who has to watch what they eat, exercise, take insulin or blood pressure medication, and reduce stress where possible. Many of us have circumstances that require attention and care and force us to make sacrifices. Mine happens to be schizophrenia. I know what it is like to live with a severe mental illness, having maneuvered the landmines for decades. And because I know what it looks like, if I had to choose one disease over another, I would probably stick with schizophrenia because it is familiar and even with the worst of the symptoms, I have carved out a life I can celebrate, share with others, and enjoy.