Risperdal made me restless, Zyprexa made me gain weight, and Abilify gave me acid reflux. These are my conclusions after years of medication management.
I remember the first time I started taking medication in the hospital, or at least the first time I felt its side effects. I was on Risperdal, bumped up to 6 milligrams per day, a maximum permitted dose of the drug. I couldn’t sit still, couldn’t read, and found myself pacing up and down the floor hundreds of times daily. This is due to a condition called akathisia, a common side effect of many anti-psychotic drugs, in which one feels a sense of inner restlessness.
When I got out of the hospital I was taking three medications, a couple of which I took multiple times daily. Risperdal was the only drug I actually needed to control my symptoms. The other two, Cognentin and Inderal, were to control side effects like blurred vision and the restlessness that I constantly felt, but they did not seem to have any effect. It was at this point in my life that I felt I had hit bottom. I couldn’t go to school, couldn’t work and I never felt good. I had to get my blood drawn every couple of weeks to test my body’s reaction to the medication, which I detested.
I don’t know why I did all of these things while I continued to be psychotic. I guess I did them because people told me to. Without that critical support I may have just abandoned my treatment because of the terrible ways the drugs made me feel.
The next doctor I saw put me on Zyprexa. I felt like it controlled my symptoms well, and it did not cause terrible side effects, except for one: I would eat like my stomach was a bottomless pit. I never felt full and would eat second and third and fourth breakfasts, lunches and dinners. I ate an insane amount of food because no matter what I ate, I would never feel satisfied. I gained weight and begged my doctor to switch my medication.
Currently, I am taking Abilify for my symptoms, and Cogentin and Omeprazole for side effects. The Cogentin handles tremors that I get in my face and hands, and the Omeprazole handles the acid reflux and acid indigestion that I experience daily. As of right now, I believe that this combination of medications is the best for me. I no longer gain weight, I am not restless, and I have medications that actually work on my side effects. After years of trying different combinations of medications, I have finally found something that is agreeable to me, something that is not that terrible after all.
I feel like I used to be a different person. I was outgoing, confident, and eager to meet new friends. When my illness began I became isolated. I rarely saw my old college friends. I was anxious when I was around new people and I felt like I didn’t have anything to say.
I have realized that I felt this way because of the negative symptoms of my illness, things like social isolation, poverty of speech, and diminished emotional affect. When I came to this realization, I sought therapy as an answer. Now I must put in the work.
In therapy I go over my anxieties and practice things like eye contact and expressing emotions. I sometimes get comments that I have a poker face, a face without emotion, and so I must work to express my feelings through facial expression and gesture. Things that used to come naturally to me take concentration and effort.
I think something that drove my isolation was the fear of rejection. I did not want people to see this change that had taken place inside of me. It was just easier to not see people than to make a huge effort in order to interact with them. My fears also extended to expressing emotions. I felt vulnerable when people could read my feelings on my face and so I began to wear a poker face as a mask. I hid behind this mask and it became second nature to me.
My social skills are now coming back to me and my confidence is returning. I still feel anxious around new people but I feel like my fear has become more manageable, and that it is not a reason to isolate myself.
Everyone gets paranoid sometimes, but for a schizophrenic person, paranoia can easily get out of control. Every day I overhear snippets of conversations and wonder if people are saying malicious things about me. My gut feeling is always that people are being mean or don’t like me, and I must tell myself repeatedly “No, it is just my illness,” but the feeling often persists.
My paranoia used to be much worse than it is now. I had a belief common to many schizophrenic people that aliens from outer space had taken over earth and that they were able to manipulate my thoughts. This belief, however bizarre, was how paranoia presented itself in my personal experience. (I did, however, stop short of wearing a tin foil hat.)
With therapy, my paranoia has become much more toned down. I have recognized the role my insecurities and moods play in influencing my paranoid thoughts. If I think I don’t look good one day, I might think people are talking about my appearance. If I am feeling lonely I might think people are saying they don’t like me as a person. I have to be cautious with what I say in these situations and keep my emotions to myself because many times my gut feelings are not justified.
I often need to discuss an ambiguous situation with someone to obtain a clearer view and figure out if my instincts are right or wrong. For example, when I think someone has said something negative about me I will usually discuss it with my girlfriend. We go over the situation together and more often than not I find that I have taken an innocent remark the wrong way.
One thing that bothers me is that when I am in a situation where someone is saying negative things about me, I cannot answer back right away because I am afraid I may have misinterpreted them. This makes me appear as if I am weak and cannot defend myself. I do not like the feeling of taking abuse and allowing people to walk all over me, but I figure that as long as it does not bother me too much, this is what I must do for now.
I must accept that for the time being I have trouble with paranoia, but I do not expect it to last forever. As I have stated in previous posts, I believe that with medication and therapy I can completely heal from my illness and free my mind from paranoia.
The first and hardest step in my recovery was accepting that I had an illness. After my first hospitalization I was still half convinced that people I knew were aliens (yes, the “take me to your leader” type of aliens). Despite this belief, I continued my life with school, friends, and everything else. I took my medication because my doctor ordered it, but all the while I considered my stint in the hospital to be a single episode and not part of a larger illness.
When I was away at college, I stopped taking my medication and stopped seeing my doctor, and there was no one to encourage me to do these things. Sure enough, I became increasingly psychotic within a few months and I was back in the hospital again. This time I thoroughly believed in my delusions, and when I was asked questions about my condition I gave all the right answers: “No, I am not experiencing hallucinations” (the voices were real) and “No, I am not experiencing delusions” (my psychotic beliefs were based on reality).
The hospital discharged me after just a few days, while I was still acutely psychotic, and I remained that way for months afterward. I never took medication. One day, I was online, reading articles, when I stumbled across a person’s account of their own illness. While reading this account I had a revelation: this person had the same thoughts as I did and they had a very real disease called schizophrenia. I slowly began to admit to myself that we shared this chronic illness and it soon came to me that I needed to do something about it. I needed the medication the doctor had prescribed but I was hesitant to start taking it. It was hard to accept that I needed to take responsibility for attending to my condition. It wasn’t until my on again off again girlfriend gave me an ultimatum–either I took my medication or she would stop seeing me–that I eventually gave in and took it.
This was my turning point–I got better and better–and while I still had the hallucinations and delusions, they became less and less pronounced. The voices slowly lowered in volume and the delusions lowered in frequency. Since then I have not looked back. I take medication every day and go to therapy. My healing seemed to be a two step process: I first had to be convinced that I had an illness and then I had to be encouraged to do something about it.
In retrospect, I feel that my experience with hallucinations and delusions is shared by many schizophrenic individuals, and if they could be exposed to others’ accounts of the illness, then they could also begin the process of healing.
Are you ready to get up and go? If you are a recovering schizophrenic, maybe you are not quite there yet. Negative symptoms like diminished motivation, socialization, emotional responsiveness, speech, and movement may accompany the better known positive symptoms of schizophrenia like hallucinations and delusions. These negative symptoms can be just as devastating to the affected person, and may even exact a larger toll over the course of the person’s lifetime.
My negative symptoms were hard for me to see. I was often told that I didn’t speak much and that events didn’t seem to affect me the way they should, but I thought “well, this is who I am now.” I did not know it at the time, but the illness had taken my identity such that I had confused the negative symptoms with who I was as a person.
Often during this time I felt like I had nothing to say to people and I stopped seeing many of my friends. Making the effort to find a job seemed impossible and so it was far from my mind. I felt like I had lost the confidence and pep that I used to have. In a way, this led me to isolate myself from people and situations that seemed to be too much for me, not knowing that these things could have helped me to heal. It wasn’t until later, when I accepted that I had negative symptoms, that I went into therapy to do something about it, and this is what brought me back to life.
In therapy I learned to interpret other people’s moods and what they might be thinking as well as how to express my own feelings through gesture and facial expression. I improved my eye contact. I also learned how to interpret ambiguous social situations and learned not to jump to conclusions easily. In every way, I learned how to better interact with others. My confidence quickly returned and brought my motivation with it.
Now people around me are surprised and delighted by the positive changes in my speech and in my actions. I feel like I have come home.
Recently, memories came to me from way before I was diagnosed. I remember being an eleven year old boy walking up to a group of friends thinking “they are talking and laughing about me” and when I asked if they were, it was always denied. I would then ponder, “why do I think this all the time?,” without ever coming to an answer. I now realize that these are classic symptoms of schizophrenia.
The earlier the onset of schizophrenia, the harsher the illness manifests itself. This itself does not comfort me in my struggle, but to hear this and then reflect on how far I have come makes me feel empowered. The illness still affects me when I am under stress, or when I have too much caffeine (caffeine undermines the effectiveness of the medication), or when all is quiet and I hear a voice not unlike the sound of a soft wind blowing through the trees. On the whole, however, I feel like I have long been victorious in my ongoing war against schizophrenia.
This may sound like a fantasy to friends and family of people with schizophrenia. They may feel a sense that the person is lost, and is no longer the person they once knew. The illness used to be looked upon as a chronic state from which one never recovers. I know this because people in my family thought this exactly, and unfortunately I suffered because of it, lacking the support I needed. I can attest, however, that this is no longer the case and with patience, medication, and therapy, the illness can be managed and under control.
Management is important from first onset to everyday maintenance. This is because with every episode of psychosis the illness becomes more difficult to treat. Most important are the people encouraging the schizophrenic person to take medication and to go to therapy. Hopefulness and patience with different combinations of medications and therapies is essential for recovery because eventually one combination will work in alleviating symptoms.
Looking back, I feel that the hardest and most significant part of recovery was accepting that the world of hallucinations and delusions is not actually real, that it is instead an illness, and that I needed help. While being supportive and encouraging treatment is beneficial, I think helping people to gain insight into their illness is the only way one can get them to independently manage it. This can be tricky, as many people in treatment may still deny that they have any illness at all. However, talking about the symptoms of the illness with the affected individual can give them a framework for comparison with their own experience.
Recovery from schizophrenia is a long road and it is important not to give up hope and support along the way. You may be surprised when you find a person returning to who they once were.
Welcome to my blog at the mental healthy site entitled “Schizophrenic Life.” I am happy to start a brand new adventure in blogging and hope you will join me in addressing the topic of schizophrenia.
In this first post, I would like to outline what I will try to accomplish with the site, namely to give a complete picture of schizophrenia with all of its nuances. I will address positive and negative symptoms, treatments, feelings of those affected, and feelings of family and friends. I want the blog to be supportive of people going through a difficult time in their lives.
The blog will be updated twice a week with content that I find to be relevant in dealing with schizophrenia. I want to thank you for reading and for supporting those affected with mental illness.