Relapse: Return of an Old Foe

I recently had a relapse. It shouldn’t have come as a complete surprise since bipolar disorder is cyclical in nature, and I’d also made a few minor reductions to my main stabilizer. But it was somehow still a shock after nine years of stability—about as much as learning I was pregnant at age sixty-six would have been. I’d become complacent over time about my stability, which proved dangerous. I thought I would no longer have the extreme mood swings I used to have or that switches in mood happened to those less fortunate than me. I couldn’t have been more wrong.

I’d been on the same drug regimen for about ten years but wanted to try reducing my chief antipsychotic medication. I’d led a balanced life on that treatment plan, never wavering up or down more than the average person. However, I was fed up with unwanted smallish side effects that continued to nag me and needed to find out if I could eradicate them. Foolhardy, I know, but I was willing to take the risk and accept any repercussions that ensued.

Side effects had always been a reasonable trade-off for living life on an even keel but as I approached almost a decade illness-free, I felt there must be a better arrangement: one with fewer side effects. Unfortunately, many of those with bipolar disorder have faced this dilemma at some point in their journey with psychotropic drugs, especially antipsychotics. Shocking, that after being on antipsychotics for thirty-one years, the choice is often still between stability—with some nasty side effects like weight gain or sexual dysfunction—or mood swings. Had there been no progress in all that time? I wanted to laugh more often and feel less numb, fed up feeling as flat as the wheatfields of Saskatchewan or like I was only ever half-there. No one wants to live that way; merely existing. Was this asking too much?

“as I approached almost a decade illness-free, I felt there must be a better arrangement: one with fewer side effects.”

My psychiatrist was sympathetic to my plight, even going so far as to admit the drug I was taking caused emotional numbing. So, with his consent, and monthly supervision, I started to reduce my main medication in small increments, three times over a three-month period (even though this tweaking would take me below the therapeutic level). I would never have attempted this without his approval. Now was the time, if any, to see if I could remain stable on a lesser amount of antipsychotics knowing full well I could never be completely medication-free, always requiring some sort of maintenance dosage. I wouldn’t know the minimum dose necessary to sustain a balanced life until I tried. And so, I proceeded with a fierce determination, relegating any reservations I may have had to that place in my mind where denial resides.

After just four months my mind started to revolt from not receiving its steady stream of antipsychotics. My quality of life was the first to decrease, quickly followed by a drop in happiness. The bogeyman had emerged from underneath the bed, where he had been lurking all those years, ready to pounce at the first opportune moment—threatening to swallow me up whole.

The mood swing could not have been more evident or unwelcome. I scrambled to gain equilibrium while the whole world seemed to breathe casually in and out, oblivious to my struggle.

There was a slight reduction in sleep with each decrease in medication, as was to be expected since I was reducing a drug that had a sedative effect. I didn’t let it unnerve me too much in the beginning because I’d been sleeping a solid eight hours for years; I could tolerate a little loss in sleep in exchange for fewer side effects. But it quickly dropped to five hours. Then four and a half. Several bad sleeps in a row changed my perception of the world from one that felt safe to one that was hostile and unrelenting.

I started to feel irritable, listless, and apprehensive having lost the practice of falling asleep; a behaviour so basic and universal that it comes naturally to most people but often eludes those in the throes of spiralling moods. It sent me into panic mode since insomnia had always been an antecedent of drastic mood swings in the past. My new normal was not normal at all, as I tried to navigate walking on uneven ground, while my mind was under attack.

I had no idea my serene existence had been so precarious. But I did know I’d been far too ill for far too long in my early years to want an encore.

How could I have been so nit-picky? I should have embraced the concept “good enough is good enough” but strove for perfection instead. In no time, I started to ruminate incessantly, living in only a speck of light; picking at old scabs until they bled, daydreaming about settling old scores from ten, fifteen, twenty years ago when I’d never felt the inclination to act upon them when I was well. Luckily those thoughts stayed in my head, with me not being sick enough to act upon them as I had been in the past.

My jaundiced view of the world returned almost immediately—and the fear all too effortlessly. In a flash, I was right back where I had been before: in detention, and feeling sorry for myself, when everyone else seemed to be out in the playground chasing fun. I hated everything about this switch and wished I had left things well enough alone, embracing the status quo and accepting that stability came with a price.

Mildly depressed? Hypomanic? Or did I have mixed features with both high and low symptoms at the same time? An old pro like me with decades of experience couldn’t tell what ailed me. All I knew was that my mood wasn’t level, and I was firmly in the vicelike grip of an episode. In a moment of irrationality, I thought maybe I could ignore the switch, as it wasn’t yet out of control, but decided I would only be lying to myself and, more importantly, my inaction could result in a severe mood swing either way.

Not dancing around the truth was a simple tool that had always paved the road to wellness for me, keeping mood swings at bay. I knew when my mood was on the upswing, for example, long before anyone else. I could tell when my behaviour was no longer my behaviour but something more. Over the years, I have learned to acknowledge even a slight change pushing at the door, acting on it, before it had a chance to gather momentum. If I let it go unchecked, it was more difficult to get under control, like trying to put a food processor and its six attachments back into its original box.

I initially saw my relapse as a major setback but dismissed this notion; reframing it as an opportunity to triumph over adversity instead. At that point, I made my mental health my number one priority. Numerous emergency calls were made to my case manager whom I had not called in a very long time. And my psychiatrist was kept abreast of my situation. After four months, it became evident I had to return to a higher dose of meds to rectify the situation. So, I ended up reverting to almost my previous level, but now required a sleeping aid that hadn’t been necessary before. It was a strained time and infuriatingly of my own doing.

“I initially saw my relapse as a major setback but dismissed this notion; reframing it as an opportunity to triumph over adversity instead.”

I know depressions lift and elevated moods settle down, just as leaves fall in autumn, but it can take time to regain equilibrium. Unfortunately, I had to wait weeks for the increase in medication to produce the desired result as there is always a lag before the drugs take effect. That’s because we humans can’t stop a switch in mood dead in its tracks any more than we can stop the waves from crashing on the beach.

My quick response, to the worsening of symptoms, managed to arrest a radical shift in mood before it took off like a helium balloon let loose by a toddler. I was correct in believing I could reduce my medication—and it was my prerogative to try—but erroneous in having reduced it as low as I did below the therapeutic level. The therapeutic level is set for a reason, and I would never go below it again. I was fortunate and escaped with only a bruised ego.

Would I do it all over again since my mood eventually levelled out?

Absolutely not!

I destabilized so quickly. At the end of it all, the net result was only a small gain. I was left with just a slight reduction in side effects versus the very real risk of initiating a major mood swing, which could have taken over a year to control (my mind has always been fertile ground for stubborn low-grade depressions). Or I could have needed a major increase in drugs to produce the very state of equilibrium I had relished for almost a decade and had so unceremoniously discarded. I had foolishly jeopardized my longstanding stability.

It’s safe to say we’ll never be inoculated against the vicissitudes of bipolar disorder, so we must work with the existing range of psychotropic medications in various permutations. It’s also imperative to have a good rapport with our psychiatrists or doctors, so we feel comfortable sharing the challenges we’re having with side effects. I was deeply saddened when I read author Sarah Manguso’s words of heartache regarding her best friend abruptly discontinuing his medication without his psychiatrist’s approval because of intolerable side effects, which resulted in tragedy: “He’d expected the pills to be poisonous, so he didn’t question the side effects, didn’t ask the doctor for something else, another pill, another dose, another combination.” We must all try to advocate for ourselves as patients because sometimes no one else will.

“It’s also imperative to have a good rapport with our psychiatrists, or doctors, so we feel comfortable sharing the challenges we’re having with side effects.”

I have now fully embraced that I am beholden to a certain level of antipsychotics until I take my last breath, and I am stable once again, full of gratitude. I guarantee I won’t be modifying my medication anytime soon.

When the episode came to an end, I was like a bowl repaired in the tradition of the Japanese art of Kintsugi. Whereby broken pottery is mended using lacquer mixed with powdered gold to fill in the cracks, resulting in a new and very different looking piece of pottery but just as strong as before.