Posted by Tomatheus on December 19, 2013, at 23:45:02
Before the onset of my chronic fatigue and hypersomnia some 14 years ago, I used to take pride in the fact that my actions made a positive difference in the lives of others. I wasn't sure that a career in newspaper journalism (which is the career that I was studying for around the time my symptoms emerged) would necessarily become a means of making the world a better place, but I thought that if I worked hard (both at the workplace and elsewhere in my life) and treated others the way that I would like to be treated that I'd be making a positive difference in the lives of those around me.
For much of the time that I spent fighting my chronic fatigue and hypersomnia, I remained hopeful. Hopeful that I would find a treatment that would restore my vitality and my sleep patterns so that I could wake up in the morning with enough energy to start my daily routine and keep going through the day, just as I always did for the first 20 years of my life. My first treatment of choice, psychotherapy, didn't seem to make a difference, and although medications were sometimes helpful at times, none of them ultimately did any good in the long run, and some almost definitely have done some long-term harm.
In the middle of 2006, with my fatigue and hypersomnia at a much more advanced stage than they were at when they first surfaced, years of taking medication left me sweating more excessively than I used to before I took them, with a tremor mostly in my hands, and an exaggerated anger response. Unable to work because of the severity of my fatigue and hypersomnia, I had been living with my parents, but in part because I was taking medications to try to restore my energy and my sleep patterns to a level that was at least reminiscent of what it used to be at, I soon found myself living out of hotels and struggling for survival. With the combination of a medication and a supplement that I was taking, I managed to hang on for a job for three days in January 2007 and move into an apartment. Even then, I remained hopeful that some way, some how, I would get my energy back. Certainly if it could come back temporarily with some of the medications and supplements that I had taken, it could come back on a more long-term basis.
Then, one night, after thinking that I had discovered a special insight about humanity, I found myself completely unable to sleep. The next morning, I felt as though God were speaking to me through sounds that were coming mostly from the ceiling and walls, and that everything around me was responding to my thoughts. After many hours of driving, receiving what I thought was divine instruction from the lyrics of the songs I was listening to, I found myself forced out of my car, put in restraints, brought to a place that I now understand was a hospital, and eventually transferred to another hospital. I was told that I had gone psychotic.
Over the next few months, my symptoms continued to change, and I ultimately found myself with somewhat more energy than I had when I was in the depths of my fatigue, but I also felt almost mentally retarded in some ways. I could no longer follow what others were saying very well, especially when they spoke real quickly, and I just couldn't concentrate well enough to read much of anything. I eventually found an antipsychotic that I could tolerate in Abilify, and even though it seemed to control certain symptoms, it didn't seem to put a dent in my problems with concentration and overall cognition. Nor did it help much with the residual problems that I had with energy and hypersomnia.
I've spent more than five years on Abilify. Living with my parents once again, I've been living more comfortably than I was at the time my psychotic symptoms emerged, but I wonder what for. Essentially, the time that I've spent taking Abilify has been what I consider to be a complete waste. I don't feel that I can drive safely on Abilify, and even if I could, I think that my problems with energy, concentration, cognition, and sleep cause too much functional impairment to allow me to function in the work world. I've basically become a burden to the rest of the world, far from the hopeful, idealistic individual that I was before any symptoms came on. My parents, though they still seem to want me to live with them, regard me as someone who's not trying to make my life better and as someone who doesn't even want to get better, when I would do pretty much anything to get the sense of well being that I used to have (and the hard-working lifestyle that came with it) back.
So, what now? Really, what now? No treatments seem to make any kind of long-term impact on my energy, my concentration, and my cognition. Yeah, supplements help temporarily, and that's a big part of the reason why I've been able to write this message (because I'm taking a supplement that's helping a little), but they don't help at all in the long run. Every antipsychotic that I've tried other than Abilify has had intolerable side effects. If I stay on Abilify, my remaining years are likely to be at best not much different from the past five years that I've spent taking the medication, which I've already described as a complete waste. But stopping the medication could very likely make matters worse. I'm kind of at a point where there don't seem to be any viable options left other than to keep living a life where I'm doing a lot more harm than good or to head down a path that will lead to my total destruction. So, again, I ask, completely rhetorically, what now?
Tomatheus
Has an affective psychosis with strong symptoms of fatigue, hypersomnia, and difficulty concentrating
Taking Abilify & supplements
poster:Tomatheus
thread:1056599
URL: http://www.dr-bob.org/babble/20131209/msgs/1056599.html