By Jorie –
If you have a chronic illness of any kind, chances are you are familiar with the dark shadowy monster that lurks in the background just waiting to pounce on you. That monster is mental illness, and specifically for me, bipolar disorder and panic disorder.
They so often go hand in hand, swinging arms as they hold hands tight, skipping merrily down the path called “life.” I imagine they even carry a big, bulbous balloon and eventually, it goes “POP!”
Mental illness and chronic illness, namely chronic migraines in my situation, are considered comorbid to one another. This means that if you have one, your risk for having the other is much higher according to medical findings. The odds aren’t in our favor; illnesses just love company, and learning to balance it all can feel daunting at times, if not impossible.
My experience with the two has been a battle I’ve fought for years. It reached its peak in my freshman year of college when I had my first “real” mental breakdown, which I may go into at a later time, but I’ve had several other rides on the demented roller coaster since then.
In the last month prior to writing this, I had a bumpy brain ride that left me nearly hospitalized due to a severe bipolar mixed episode with psychosis, a lack of sleep lasting for days, and almost unbearable chronic pain and migraines. Apparently I was close to “A Beautiful Mind” scenario as Mom put it, noting the recent struggle of a friend’s daughter.
I heard things that weren’t there — soft whispers as though someone were right in my ear; of course I knew no one was there, but the sounds were there. And then, the faintest music like an old organ playing as a distant soundtrack to my daily life. I saw shadows, crawling and spiraling up my walls, on my pillow, up my arms. I even swatted at them at times, they were so real, like a little infestation of imaginary bugs. I had “out of body experiences” as I explained it — this is known as dissociation, something that occurs when your brain can’t identify with physical reality.
In essence, I felt like the epitome of “crazy.” It’s difficult to explain what my mind felt as it detached from my body, but I remember telling my psychiatrist, Dr. K., that I felt like a patient out of “One Flew Over the Cuckoo’s Nest.” I at least had the brains about me to know that something was wrong. I just hadn’t crossed over that invisible barrier between “sane” and “insane” yet. I feel that it may be worse to be in limbo, though: a mental purgatory, if you will.
As I sat in Dr. K.’s office that first day I sobbed even though I kept telling myself not to, feeling helpless and hopeless and whatever other -less words there are in the dictionary.
“Are you a danger to yourself?” he asked.
These words reeled in me as time slowed. I’d heard them so many times — they were no big deal. Every appointment I’m asked this question and it’s usually run of the mill, just protocol of a check up. But this time the question seemed to have so much more weight to it. I could’ve been knocked over with a feather had I not been so tense with anxiety. Hands clammy, legs shaking, voice faltering. Am I a danger to myself?
“I don’t know.” I told the truth — I didn’t know. But I didn’t think I truly had the motivation to DO anything. I wasn’t doing anything at all: practicing good hygiene, eating, sleeping above all. My present situation was, in fact, a lack of doing.
“Would you feel safer if I admitted you inpatient for a while?” Dr. K. asked.
Again, I murmured, “I don’t know.” I didn’t know anything at that moment. I didn’t think I was unsafe in my body, though, I just felt utterly betrayed by it. Again, I wasn’t even doing anything. My mind was a melting blur of muck.
We discussed it in more detail and altered my medications,pretty intensely, ultimately deciding that an inpatient stay wouldn’t be good for me at this time due to my chronic illness and migraines (another part of the illness dichotomy). We could tackle this demon at home.
I left feeling slightly better about our plan of action, knowing I had at least one doctor on my side. “I want to see you again in a week,” he said reassuringly. “We will get you better, I promise.”
The verdict: I would be on a medical leave of absence from my job for the next week as I recovered (however, the next week’s follow-up appointment revealed that another week of leave was needed).
Needless to say, the first goal was sleep. This would help me get out of the migraine and psychosis cycle, he reasoned. He prescribed what he called “the velvet hammer” (olanzapine, and then quietapine). Naps, naps, and more naps. I was not going to work at all and not much working from home either. Less time online or on electronics, and I was ordered to find a relaxing hobby to channel my emotions. I’d also start an intensive outpatient program soon for others like myself in a group therapy setting, called Transitions. This all sounded great, and it has been…sort of. Nothing is perfect, but maybe that’s how life is meant to be. Perfect just isn’t interesting.
I’ve been officially diagnosed with bipolar disorder since mid-2015, but Dr. K. believes I may have had it much earlier than that, going even as far back as high school. He’s quite positive that the mental breakdown I had in college was due to bipolar disorder and not depression and anxiety as I’d originally been diagnosed. In hindsight, it doesn’t matter too much.
Today, my bipolar disorder is controlled fairly well and I’m considered “high-functioning,” but sometimes it rears its ugly head into my life when I least expect it. Living a high-functioning life doesn’t mean that my mental illness isn’t there. I may look normal, even act normal to the untrained eye, but it can burrow silently in my bones waiting for some event to spark the madness from its slumber. This time, the trigger came from an unbreakable cycle of migraines, unrelenting joint pain from RA, and new symptoms associated with a possible autoimmune illness.
I hadn’t been sleeping for days, I was practically a lunatic in my head as I described earlier, and if I dozed off it was only for mere hours at a time. I wanted sleep desperately; I begged and prayed for it to come. I did all the rituals: creating a relaxing and calming environment, turning off electronics, taking a soothing bath with essential oils, reading a novel, and finally, but not proudly, taking so many combinations of pills I wondered if I would even wake up in the morning. Sleep was the priority at that moment. Muscle relaxants, benzodiazepines, pain killers — anything that might make me drowsy enough to sleep, I took it. At this point though, nothing else mattered to me, and that’s where it all went downhill.
The pills worked only partially, effectively tossing me into a daze of zombie-like stupor. When I slept, I slept fitfully. I dreamt psychedelically. Or maybe they weren’t dreams — I’m not too sure to be honest. I woke up confused. Never mind what time it was — “What year is it?” went through my psyche often. The pain of waking up was excruciating because my joints would stiffen to concrete and the migraine still persisted, always there to greet me whether in prodrome or postdrome phase. My mind and body both seemingly moved through a pool of quicksand. Sleep had always been my ultimate escape, and it had been taken away from me. That was simply unfathomable.
The breaking point of this whole situation, prior to seeing Dr. K., came around 3:00 am on a Saturday night. I suddenly realized how truly upset my life had become. I was in so much pain I couldn’t even comfortably lie in my own bed. It just hurt so badly. Everything hurt — my physical body, my mind, the core of my being. I envisioned myself as a wall, bricks falling out of place and crumbling to the ground in shards. No amount of mortar to put me back together at that moment.
I couldn’t control my pain, my migraines wouldn’t stop cycling, and my doctors and nurses didn’t care to help me further than some basic pill-popping. My friends, family, and coworkers didn’t (really, they couldn’t) understand what I was going through. I felt I was failing as a partner, daughter, employee, friend — everything. The weight I was carrying was immense; I finally collapsed.
And I cried.
I really ugly cried, to be more precise. I cried the healing battle cry I had bottled up for far too long. The tears flowed like an engorged waterfall after a stormy downpour and I choked on sobs wondering, “why me, why me, why me?” What had gotten me to this point? How can I go on? I remember a quote from the book The Bell Jar by Sylvia Plath (who has always been one of my muses) entered my mind at that moment, and it rang unbelievably true. I am. I am. I am. And I just was. At that moment, I just was — nothing more, nothing less. Everything. Just. Was.
I didn’t know how to talk about any of this verbally, though. Not even to my closest loved ones. How to do you explain with total seriousness that you’re seeing and hearing things that aren’t there? Maybe it’s not even happening, I thought. I doubted my own reality. How peculiar that the brain can deny its own sickness.
My lips were glued shut and I simply kept going through the motions without any realness of it, putting on the face, just being the “me” that everyone expected me to be. Laughing, smiling. But the me inside was crying out for help. I couldn’t find that voice to say “please help me, I’m drowning.”
These feelings are inherently wordless at times and it’s hard to explain the experience if you’ve never felt it. I’ve always been much better at articulating my thoughts in writing , especially my physical world such as the migraines, rather than verbally talking about them. I think that’s another reason this progressed so far. I wasn’t sure how to articulate “Hey, I’m going crazy over here, and not figuratively.” Mom told me later that she knew something was wrong from my body language and other small hints but didn’t realize the gravity of it. Luckily I saw my psychiatrist that next Tuesday.
Since Dr. K.’s advice to find calming hobbies, my mental stability has improved a bit. I took up art and smash journaling again, something I enjoyed as a teenager, as well as jewelry making. These have consumed me and have been my greatest escape; Trey even suggested I open an Etsy shop for my jewelry. Either way, both have been extremely cathartic and I’ve just let myself spend this time doing them, time that doesn’t have to be watched or thought about. Just “me” time.
The chronic illnesses aren’t gone, and my bipolar disorder isn’t gone — I accept that they won’t be, ever. They’ll only be treated or managed. I’m coping a little better today, as I write this, although at times I feel like I could snap as easily as a brittle autumn leaf. That’s how I feel right at this moment of writing: like a leaf, radiant in its foliage, but fragile in its falling stage of life. A delicate, crepe paper leaf. You know the ones: touch me just so and I’ll crumple.
I start the intensive outpatient group therapy next week as a substitute for inpatient care and I’m feeling optimistic about it. Perhaps I’ll even write about my experience with that to open more eyes and spread more awareness about what that’s like, too. One of my relatives actually called it “the loony bin.” I want to change that outlook — it is not a “loony bin,” but rather a place for those of us who have gone mentally astray to learn a way to get back on our paths, whatever that may be. Fortunately, I have other close loved ones — both family and friends — who support me in this.
These diagnoses don’t define me, the bipolar disorder nor the chronic migraines. I may write and post about them frequently, but my real goal is to raise awareness and be a voice for those who feel they cannot speak up for any reason. That’s all I want. I want YOU to understand, to “get it.” This blog post doesn’t delve as deep as it could, and it doesn’t tell even half of my whole story with mental illness and migraines. But it’s a start. We have to start somewhere.
I want to close this blog post on a positive note. I started The Migraine Mantras on the basis of a quote that has always resonated with me:
“Every experience, no matter how bad it seems, holds within it a blessing of some kind. The goal is to find it.” – Buddha
So that’s that. I’m not claiming to be cured, I’m not totally better, but I’m working on fighting my monsters and finding my blessings. The monsters may be intimidating, but I have the power to turn them into something useful to myself and others.
If telling my story helps just one person, I have succeeded. And please trust me when I say blessings are everywhere, hidden in the most mundane, unexpected places.