Tuesday, February 03, 2015

A Cautionary Tale About Meds

I wanted to talk about meds compliance today because both Thomas and I have had experiences with this lately. I mentioned earlier that I saw my own psychiatrist on Thursday when Thomas saw Dr. N. and my meds were called into question in my own appointment.

First of all let me start of with a percentage that Dr. K. shared with Thomas and I. With Thomas feeling better it is apparent that Dr. K. is worried about Thomas going off of his meds. He asked Thomas what the percentage was of people, who once they get to feeling better, go off of their meds. I figured it was high but I left Thomas to guess who came in with 60%. The number, according to Dr. K. is actually 70%!!! I was surprised it was that high but then I thought about something. Let me just say this, Thomas said he had no intention of going off of his meds and in a later discussion with him he told me that he knew that the meds were what were keeping him stable.

I know.

I'm one of the lucky caregivers whose loved one stays on their meds and actually WANTS to stay on their meds. I don't take this for granted for one second. I imagine the nightmare that both Thomas and I would face if he were to stop his meds not the least of which is the withdrawal symptoms. I'm not even sure he'd make it past that phase.

I know I barely do.

This brings me to my own battle with meds. I use the word "battle" because that is exactly what I do.

I am one of the 70% who go off their meds when they feel better. Not only that, but when I am not feeling well, I refuse meds, though it's for much the same reasons as many of our loved ones do. I don't want to feel like a sedated zombie all of the time. I have a life to live, responsibilities, a marriage and a son with schizophrenia to take care of. I can't be stuck in my chair every day drifting in and out of sleep as the world passes me by. Sound familiar?

To begin with let me say something about taking myself off of my meds. Without fail and except for last year after my dad died at the time, I usually take myself off my meds, every late Spring I begin to wean myself off of one of my most crucial meds. The antipsychotic gets put away and I start to walk the rough road of withdrawal. Usually I have superhero strength to get through those weeks and I always make it. Therein lies the problem. Once I'm off my meds I am open to getting sick again.

And I do.

Every time.

Always the Fall comes and my symptoms return and I find myself unable to live without the help of my antipsychotic. The problem is, at that point, I am at ground zero and have to begin again to get myself shored up for the winter ahead and all of the "fun" of "mixed episodes". It's a cycle I run over and over for 10 years now and it is a foolish one.

I know to many of you with loved ones with schizophrenia or other mental illnesses requiring meds, that going off of meds is indefensible. Believe me, I'm the first one to preach to Thomas and to others that meds are key in keeping yourself stable. I know this, you see, but I don't follow my own advice. I seem to have a need to show those around me that I can be fine without my meds and to prove to myself that I'm not THAT sick. The problem is, I am wrong EVERY SINGLE TIME.

I tell all of you this because I stand by my "preaching" about meds for you all. This is not a game and if it were likened to a game it would be the life-threatening game of Russian Roulette. There is ALWAYS one bullet in the chamber and with each click of a trigger that doesn't return the "bullet of mental illness" is a click that is a major risk and an indicator that you ARE inevitably headed to a very bad place. That bullet WILL come around and you WILL find yourself sick again. It's the nature of the "game".

Quitting your meds or refusing more that are given to help growing symptoms (like I just did last Thursday) is a foolish foolish idea and I sit here today at my computer to tell you that. I am a cautionary tale. I am one of those people that you read about who can't seem to FULLY understand that it's the medications that help keep me healthy. I trade days of sedation (if I took the increased meds) for days of utter insanity where my mind races, my anger is on a hair trigger, I can't make a decision to save my life and I can't bring myself to function enough to keep up with the demands of my life. Many times during my day, apart from writing this blog--which is a miracle in and of itself given my state of mind--I will sit on the edge of my chair in my living room with the TV off just staring at the blank black screen willing myself to do something....anything...but being unable to because I can't get my mind calmed enough to function effectively.

So, then you might ask, and I know that you're all shaking your heads at me right now, WHY DO I DO THAT? Why do I take myself off of them and why don't I accept increased dosages? To be clear, I do, in Fall, always go back on my antipsychotic but come Winter I hold off on any increased dose. Really, mostly, it's the sedation but it is also anosognosia (A "lack of insight" about the fact that you have an illness). I don't have the sense to truly accept that I have bipolar and that I need medication. I was raised to "power through" adversity, that mental illness is a flaw in human character and that if I just "try hard enough" the symptoms will go away or not come into existence at all. Always there is that way of thinking that stands in my way of getting proper care. Many ways of thinking come at me and aid in my decision to hold off on medicinal care or to stop it altogether.

I ask you, then, let me be your cautionary tale. Let me be the one who is a living, breathing example of what NOT to do.

On the way home from Thomas's therapy appointment on Thursday I brought up with Thomas that 70% figure and I admitted to him that I am one of those 70%. My VERY SMART, VERY WISE, VERY INSIGHTFUL, VERY STABLE, young man told me he is NOTHING like me in that respect and he was NEVER going to go off of his meds. He's lived my cycles with me well enough to know what I face every season of every year. In this case I am lucky. As a parent we try to teach our children to do the right thing and we try most times to live by example. In this respect, with meds, I am a TERRIBLE example and I am lucky enough, even though I'm an utter idiot, to have my much more ill son be MY example of what is right to do to take care of my mental health.

He's got it right.

I, on the other hand, have much to learn from my very enlightened young adult schizophrenic son.

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