I am honoured to present my next guest, Nicole Lyons. Nicole gives us insight as to why we have to be our own advocates in mental health and what can happen if we aren’t vigilant and active in our treatment plans.
I have spent my entire life swinging between gloriously terrifying highs and drowning in the darkest lows. It has been stunning and horrifying, exhausting to feel my way through life. I had often envied, for a moment, those people who lived their lives by logic and reason. I found them strange and fascinating, zombie-like, living their lives void of emotion, until I was among them. I used to believe that there was nothing worse than feeling the all-consuming weight of depression, until I could no longer feel anything at all.
Medication is supposed to, in theory, help you live a better, healthier life. Unfortunately, happiness doesn’t usually play a big factor in that theory, at least not in my case. My doctor’s concern laid only in making sure I was not suicidal or believing that the Universe was channelling through me. If she had those two things under control, then she was good to go. My psychiatrist was a medication specialist and hell-bent on stopping my cycles of mania and depression. It was common practice for her to adjust my medications, “tinkering” she called it, every two weeks. At this time, she had me swallowing 17 pills a day in order to reach her idea of stability, and this is what stability looked like:
Lithium. The “gold standard” in bipolar management was prescribed to me at such a high dose that it gave me tremors and tics. I could no longer feed myself, and I even started lactating, strange considering I hadn’t had a uterus in seven years. I had to stop driving because the 2200 mgs of lithium I swallowed every single day caused my vision to fail, which scared the shit out of everyone when I almost drove off a cliff. The irony here is that had I have driven off the cliff, my death would have most likely been declared a suicide because of my diagnosis of bipolar disorder, when in fact the lithium was prescribed to stop that sort of thing.
Olanzapine gave me akathisia so bad that I thought I was dying. I was alone when it happened and I can only recall flashes of memory. I was writhing in agony, trying to get to my phone to call my then ex. I ended up on the floor of my shower with three chipped teeth and a cut over my left eyebrow. I honestly cannot tell you if I was knocked unconscious, which alleviated the akathisia, or if it just stopped. I just do not remember.
“I do not remember” became my anthem, my go-to phrase in most situations. Time really had no meaning to me, and if it did, I could not comprehend it. I called these next four months “the lost months” as they were filled with risperidone, Seroquel, Klonopin, loxapine, Lamictal, trazodone, Topamax, Ativan, and the kicker, zopiclone. All of these drugs, and more, were administered under a supervised setting in a psychiatric hospital. I was there for just about a month and a half this particular stint, and I can’t recall a single moment. My failure to recollect had nothing to do with my illness, and everything to do with the medications prescribed to me by psychiatrists. These highly educated doctors who have a duty to work for their patients, to the best of their ability, assisting with improving quality of life. Apparently quality of life is subjective.
Fast forward six months and I had gained 45 pounds from the antipsychotics and had experienced more mood swings, shifts, and suicidal ideation than I ever had in my entire life. I developed an anxiety disorder that I never suffered from before I was put on anti-anxiety benzos, and I also had a peak in rage issues that can now be traced back to Seroquel. But, the worst part is that I was now fully and completely hooked on sleeping pills. I just couldn’t sleep without them. The nurses would wake me up in the hospital to take them, they were, after all, ordered by the doctor and I was in no shape to object. Now the problems really began when my body built up a resistance to them because I’d been on them for well over the two-week period that is recommended. So what is the doctor’s move here? Do we wean Nicole off of the sleep meds? Of course not, if Nicole doesn’t sleep, she will go manic! Up the dose of zopiclone, let’s go to 15mgs now. And like a good little patient, I took them.
For the next year I bounced through every antipsychotic and stabilizer that you could think of. I no longer had my cycles or swings instead I had reached stability, according to my psychiatrist. She was pleased. I was no longer a functioning human being. I was an emotionless zombie who now hitched a ride as a passenger in my own life. I felt nothing.
It was summer when my daughter showed me a family picture she had drawn. We were all there―her dad, her sister, our pets, and everyone was so bright and colourful. There were rainbows and flowers and love all clouded together in a waxy Crayola masterpiece. Off to the side of the colourful loving family was a black shrouded faceless figure with a gnarled hand that had a thin colored bracelet on it’s sickly looking arm, “Who’s that, Baby?” I asked her. It was such a horrible image to see violating this beautiful picture, “That’s you, Mama,” she smiled up at me, gave me a kiss and took off to play. I jumped off all of my meds that very same day. Two days later I was in the hospital due to seizures.
My psychiatrist at the time chastised me, as did the ER doctor and my GP. I could have died they said. What they didn’t get was that it would have been a relief at that moment. Their idea of stability and keeping my demons at bay was to shut me off like a light switch. As long as I wasn’t delusional, their job was done. No one cared about what my life was like being shut off. No one cared that my kids didn’t have a mom that could function. No one cared that I had started to develop tics from all of these meds and their side effects. No one cared, as long as I wasn’t too high or too low. That was the goal. Who cares about my life and the lives of the people who have to care for me? Just don’t let her go up.
That was four years ago. I’m much better now because I refuse to take the meds they want me to take. I take two stabilizers; one causes a rash so severe that I have to be put on cortisone cream so it doesn’t spread. I am on a SSRI that I can only take in conjunction with the stabilizers or else I become manic, but it causes restless limbs so bad that I am also prescribed a pill for Parkinson’s disease to counteract that. The Parkinson’s pill gives me nausea so bad that I am now prescribed a thick liquid to drink every morning; it’s the same stuff that cancer patients drink when going through chemo. Oh, and the sleeping pills, we’re up to 22.5 mgs of those a night. I’m probably going to have to go to detox to get off this buffet.
People think that depression, delusion, or psychosis is a scary thing. Yeah, it can be, but the most terrifying thing of all is feeling absolutely nothing at all. I have been on the ground, swallowed in a sea of melancholy, and I have reached stunningly horrifying peaks, but never have I felt so awful as when I felt nothing at all.
In a world where doctors are more likely to shut you off than listen to you, sometimes the “cure” is worse than the disease. I agree that there needs to be a balance, but numbing a person by throwing them into a medicated haze is not a solution. I will take my chances with feelings and intensity, living a life of uncertainty, rather than living a joyless existence. I can handle the swings as long as I can feel my way through them. I am so over, “Your meds need time to work.” I have given up years of my life waiting for these meds to work and the times I have been at my best were when I was the least medicated. I don’t want to give up another second of my life trying to find something to please a bunch of doctors who really could care less. I’m losing precious moments of a life that I actually want to live.
A life filled with emotions and ideas and intensity and flashes of brilliance is okay because to me―stability is not being med-compliant and decreasing the episodes. I have bipolar disorder, the episodes will happen regardless of if I am on meds or not on meds. But if I do as they want me to, without a doubt I will turn back into that black shroud in my daughter’s picture. It does not have to be treated this way anymore. This same cycle of med tweaks and changes every month has shown nothing but failures over the past four years, culminating in a body that is reliant on sleeping pills as if it were heroin. To me, stability is learning how to ride the lows and harness the highs, with as little fallout from the in-between.
Nicole is the mother to two sassy and brilliant daughters. She is a fierce mental health advocate and volunteers her time with a Canadian NPO that focuses on suicide prevention. She is the creator of The Lithium Chronicles and a columnist on Psych Central. She is a hippie at heart and believes that the world can be changed by one small random act of kindness at a time.