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Meds, Misdiaganosis, and the Mess In My Head

October 10, 2019

 

I often joke that the worst kind of crazy people are the ones who don't know they're crazy. But the word "crazy" in and of itself is often an unfair one when applied to people with untreated mental illnesses. I feel qualified to make the joke, as I've learned to take my own mental illness in stride over the years, through a lot of therapy, medication changes, and self-awareness. It's like my arm or leg or tattoos, it goes everywhere with me. It's a part of who I am, but it no longer seems to define me like I once allowed it.

My journey of treatment began at the age of 21. I woke up in the middle of the night with a sharp pain in my chest. I couldn't breathe without the pain shooting throughout my upper body. Terrified I was having some sort of heart issue, I was whisked away to the ER by my then boyfriend. My parents met us there. After a long night of inconclusive tests that showed I was in perfect health, I was diagnosed with anxiety. I had woken up from a dead sleep to my first ever panic attack.

 

At the time, it made sense. I was going through an extremely stressful time in life, working and going to school full time and dealing with a houseful of roommates and their respective boyfriends that all seemed to bring their own issues into my life. The tension was so bad in the house, that I was told to go stay with my boyfriend, who happened to live a few houses down, because it was "easier." I wasn't even welcome in my own home.

 

That night I was sent home with a prescription for anti-anxiety drugs, Paxil and Xanax. While Xanax works immediately, slowing the brains response, therefore making us less anxious, Paxil is an extended-release drug, that works over time, actually changing our DNA, specifically those genes affecting serotonin, sometimes otherwise known as the "happy chemical", because it contributes to our well-being and happiness. 

 

I continued on both of those medications for nearly 7 years, without therapy, until after a suicide attempt in 2009. A short time after I was released from the hospital, I met with a therapist for the first time. We had a very open and productive conversation. When I went back the second time, I was checked in and sent to the waiting room. After 40 very patient minutes on my part, I went back to the front desk to see why no one had called for me yet. Somehow, I had gotten lost in the shuffle and the front desk had neglected to tell me that my therapist wasn't even there that day. They apologized and told me someone would be in touch to reschedule. No one ever called. After coming out of a suicide attempt alive and being very much of the "it is what it is" mindset, I just kept pushing forward with life, and returned to taking my medication regularly - something I actually wasn't doing beforehand, largely due to the stigma and negative feedback I'd received concerning it. 

 

 

Several years later, I found myself fresh out of a relationship with a pathological liar. There wasn't anything off the table. He didn't just lie about where he was and who he was with. He made up lies about his son's well-being. He lied about his mother having cancer. He lied about jobs and employers and friends. He lied about so much so often, I suddenly found myself feeling like I no longer knew anything about life. It was as if I felt like I could no longer differentiate between what was real and what wasn't. I sought out a therapist to help me sort through the thoughts and doubts in my head and make sense of the world around me, again. This began a years long process of self-discovery and developing self-awareness.

 

I saw my therapist off and on for years, typically returning when I'd hit a severely rough patch and found myself struggling with coping and resuming every-day activities. I remember during one particularly dark period asking her if she only said what she did because she was paid to do so. She just laughed and told me she truly loved what she did. I had let my own head fall prey to the thought most people have about therapy: it couldn't possibly really work. However, studies consistently show that medication along with cognitive behavioral therapy (CBT - a type of psychotherapy in which negative patterns of thoughts about the self and the world are challenged in order to alter unwanted behavior patterns or treat mood disorders such as depression) work better than medication or therapy alone.

 

Even after seeing her for years, my current nihilistic state had started turning the wheels of doubt in my mind. It's no easy process. So many people say they won't see a therapist. They don't trust it or feel like talking to a stranger could possibly help. But this person was far more than a stranger. She had come to learn my innermost thoughts and fears. She knew every insecurity, every trigger. She also came to learn my heart, my joys, and my strengths. And every time my mind started veering off the path of progress, she reminded me of how far I'd come and all of my characteristics that I should be proud of and lead with. She taught me how to follow a part of me I knew I could trust. 

 

However, some time years later, my anxiety was growing at a rapid pace. I had stopped sleeping, despite working two jobs and 60 or more hours every week. Even Ambien wasn't knocking me out at night. I'd lie awake, tossing and turning. TV off. TV on. TV off. Back on. Play on my phone. Turn on the fan. Turn off the fan. Try a different blanket, sleeping position, maybe a Xanax will help. Anything but get out of bed and risk being even more awake. Nothing. Nothing worked. I was still awake, and there was no particular trigger I could identify for my new problem. When I'd finally crash and sleep for what felt like a majority of my time off, I'd bounce out of bed after a 14 hour sleep-coma with newfound energy, ready to tackle everything I didn't get done in the tired, sleepless days before. And in the process of cleaning my kitchen, I'd somehow find myself pulling everything out of drawers and off of shelves hours later, knee high in piles of things I no longer wanted.

 

This is where the self-awareness comes in. I'd seen this before. And not just in myself. Oddly enough, I'd seen it in a character of one of my favorite TV shows. Was this just a burst of newfound energy or was it a manic episode? I certainly wasn't quite as bad as what I'd seen on the show. I wasn't out making reckless life  decisions, spending hundreds of thousands of dollars at once, awake for days on end, shaving my head and coming home with a new tattoo on my face. But my downs seemed similar. Days and weeks in bed with no energy. And, to be honest, despite taking Paxil for years, life always seemed a little....dull. It's like everything had lost its luster. I remember a particular night sitting on the tailgate of my grandma's farm truck after hauling water. In the middle of a field with a bunch of cows, watching the sunset in the distance, with tears streaming down my face for no reason. It was a constant. Several summers before I'd hit a depressive episode. I avoided my family at all costs, mostly so as not to worry them. I didn't make plans. I just drifted from my bed, to my patio, back to bed, spending every waking hour crying. For no known reason.

 

I'm a learner. If you mention something interesting or something that sounds implausible, there's a good chance I'm going to be googling it that night when I get home. Dealing with my mental illness over the years was no different. I wanted to know it all, mostly so I could try to get better. Understanding how and why I felt the way I did and discovering other people who felt the same gave me a sense of community. It took the lonely out of the isolation I'd created for myself. It gave me hope that knowledge existed in a world outside of my head. I wasn't some hopeless anomaly. I was just like every subject of every study. Certain the process wouldn't fail me again, I started googling about bipolar disorder and manic episodes. While I was never quite as far gone as the extremes I read about when it came to the highs, they still felt slightly relatable. And, regardless of all the happy and joyous moments I had come to find, learn, and appreciate over the years, there was always this tinge of sadness underneath. There was a good chance my happy tears were even accompanied by an inner aching.

 

I related enough to many of the things I'd read online that I decided it was worth mentioning in my next appointment. Much to my surprise, when I mentioned mania, my therapist perked up, "I've always wondered the same thing." As she began diligently typing into her computer while I talked, I began to ask questions. What would that make my diagnosis? I certainly didn't experience the radical highs I'd read about. Highs, yes, but mild, compared to what I'd read. The answer she gave me was what she categorized as an unspecified mood disorder. The learner in me went home wanting to know more. Ten years in, I was suddenly facing a new diagnosis, new medications, and possibly new hurdles.

 

This is where I had to learn to let go. When I typed "unspecified mood disorder" into the searchbar, there were only two results, one of which was from a peer-reviewed journal that made no sense to me at all. Suddenly, there wasn't anything for me to relate to. There wasn't anything for me to learn and grow from. This time, there was no story of someone out there like me.

 

What I did know is that I was facing the fear of the label of my new diagnosis, as it fell on the spectrum of bipolar disorder. I'm not going to lie: the number of men I've heard over the years that describe the mood swings of an angry girlfriend as "bipolar" gave the term an ugly image, albeit horribly incorrect. Bipolar manic episodes can last for weeks at a time on either end of the spectrum. While the lows include a loss of energy and lack of interest and sense of discontentment about life, the highs tend to follow patterns of risk-taking behavior, euphoria, and frenzied speaking. They aren't your girlfriend suddenly getting angry and yelling at you after being happy all day.

 

Once again, this is where my therapist saved the day. First off, I am under no obligation to divulge my diagnosis to anyone. Even in relationships, where honesty is tantamount, I don't have to lead with my mental illness. In learning to guard myself appropriately, I can keep my diagnosis to myself until I am fully comfortable and trusting of the person I am sharing the information with. Maybe some people never need to know at all. Second, I needed to learn to just go with the flow. I suddenly found myself slightly panicked every time I had a burst of energy and would start cleaning the bathroom or picking up around my apartment. My highs weren't drastic or dangerous. My therapist would tell me to just go with it and use the time to be productive. I deserved to be tired. I work hard and I work a lot. If I had the energy to do last week's dishes, make dinner, and do the dishes again, it wasn't going to hurt me.

 

Lastly, my new diagnosis came with a shift in medication. One of the scarier things I did learn is how dangerous Paxil can be to someone with bipolar disorder, as it can intensify suicidal thoughts. But I also learned something many people strongly dislike about the process: it can take a lot of time. Here I was nearly ten years later, on totally different medication with a brand new diagnosis. And the patterns of behavior and thoughts that led there are likely things my general practitioner would have bypassed, even after a 100 appointments. It took someone (my therapist) who really understood me, my experiences, my reactions, and an overall understanding of the human psychological process to diagnose me correctly. And,mostly, it took me knowing myself. After all, I was the first person to mention mania between my therapist and I.

 

The first medication I was put on for my mood disorder caused a drastic and rapid weight gain. Weight I still haven't been able to get off. Weight I know is there for a reason that, behind it all, actually makes me a better person. I am still horribly insecure about my body, but I am at least growing in the concept that others can accept me as I am (even if I still haven't learned to accept myself as I am). I was switched to yet again another medication after about 6 months. And we finally got it right.

 

Let's face it, I'm still a human. I still cry sometimes. When I'm overly stressed or in the face of sad news. But that constant lingering sadness is gone, and I was released from therapy in May. My life is filled with moments of absolute sincere appreciation: where my nephew's laugh is the greatest sound on earth; where I'm laying under the night sky, camping and not wanting to fall asleep, because I've never seen so many stars; where I'm driving and need to pull over, because I just want to admire the beauty of nature; where a belly laugh with friends will linger in my mind weeks later. I've been able to thrive in my career and relationships. For all the days the medication lingers and I feel like I'm living in a fog, I wouldn't trade it to go back to the old me for anything. Finally, friends, life feels good.

 

 

 

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