Tardive Dyskinesia Citrus Blend Sparkling Water

Whee!

My tardive dyskinesia—the permanent, involuntary-movement-causing neurological side effect of my bipolar meds—is firing on all cylinders tonight. I’m shaking and twitching and lurching like a sloppy drunk swatting mosquitos on a pogo stick during an earthquake right now. But my week’s obligations are over, I’m finally home, and I’m gonna find a quiet room where I can just go and WIGGLE.

Do you have ANY IDEA how hard it is to take a decent helicopter selfie in a hooded sweatshirt? DO YOU?

The hood opens around you like a massive poppy in full bloom and you end up with a dinner-plate halo like you’re a minor saint in a Medieval altar triptych.

Anyway, when you stave off a bipolar episode by sleeping all day and then chug a pre-workout shake before an evening trip to the gym, you end up wide awake at 11:45 pm. But I wore red for International Women’s Day and I gave a little hug to (I think) every woman at rehearsal tonight (though we were a bit chaotic so I may have missed somebody but please know that you’re all kick-ass and I love all of you every day) and even though I always feel guilty when I miss work, I count today as good but I just REALLY want to fall asleep now.

I felt a little unplugged and unproductive at work yesterday, but I went on to have a killer leg workout

Then I woke up today totally scattered and exhausted, so I took my first sick day in months. It’s hard to discern an off day from the onset of a depressive episode, but I decided today was an onset and I’m glad I called in sick and spent the day sleeping to an Alexa playlist of classical orchestral music. Because I woke up human again. Lingeringly groggy, but human. Onward!

An Unquiet Mind: A Memoir of Moods and Madness

This fearlessly, brutally honest 1995 memoir examines the exhilarating highs and soul-crushing lows of manic-depressive illness (now more commonly called bipolar disorder) from the perspective of a psychiatrist trapped in the disease. Her frank and intimately personal insights bring the disease's cycles of terror, elation and crushing, abject despair into stark and sometimes heartbreaking clarity. It was recommended to me soon after I was diagnosed as bipolar in 2008, and it grabbed me on every level—from its smart writing to the recognizable, relatable, almost comforting details of its narrative—and I all but literally didn’t put the book down until I’d finished it. 

I have an indelible memory of reading it on the Red Line EL train home from work one night in Chicago, and a man who’d clearly seen me reading it made sure we made eye contact as he stood up and then he patted me reassuringly on the shoulder as he got off at the Sheridan stop. That encounter—a direct extension of this book—made me literally weep as I was coming to grips with label mentally ill and discovering the signs I’d never thought to notice until then that I wasn’t alone. 

If you are or love someone who is bipolar—or struggling with any mental illness—this book will make you weep, give you hope and quite possibly change your life.

I probably shouldn’t have been so cavalier

about living my life effortlessly free and clear on my bipolar meds this morning, because by noon I was sliding into a depressive episode fast enough that I left work and came home to crash. But five hours of sleep and shovelfuls of leftover Christmas comfort food have brought me back from the brink. Seeing Kelly Clarkson sing “Fancy” in tribute to Reba McEntire on Kennedy Center Honors didn’t hurt either. I’m profoundly exhausted, but I think I dodged a bullet by canceling the rest of my day to sleep. Onward!

One of us is a bit twitchy and one of us is a Bitch Kitty

But only one of us can blame our issues on our bipolar meds.

Tambourine, the forgotten reindeer

As is the case with many people on psychotropic medications, my bipolar meds have given me a robust case of tardive dyskinesia, a permanent neurological disorder that causes a range of involuntary movements including twitches and wiggles and shakes and grimaces and blinks and OCD things like repetitive face touching.

And I've won the tardive dyskinesia lottery and gotten the full spectrum of these behaviors, with varying degrees of intensity. Some days my knees just shiver. Some days I have epic squinting, face rubbing, rocking and anything else my body can think of to make me super-paranoid I'm irritating the hell out of everyone around me. People often ask me if I'm nervous (which happened once at a job interview I was otherwise rocking, to my eternal mortification) or cold (my veins actually course with reptile blood and I am NEVER cold) when they see me shaking. People have asked me why I'm always on my tiptoes when I sit down (the obvious answer: to help my body shake the living hell out of my legs more annoyingly). People have politely asked me to sit still.

And while these awake behaviors are bad enough, it's the nighttime manifestations of tardive dyskinesia that are killing me. Many, MANY times every EVERY night, I end up on my back with my legs bent and my feet flat and my knees slamming against each other so violently that they wake me up—usually somehow mummified in a tangle of sheets. Or I wake myself by repeatedly running my hands through my hair like I'm a supermodel being all sexy for a shampoo commercial as I ride with the top down along the 101. Or I just rub my face like I'm Lady Macbeth but the damn spots got all over everything and I need to URGENT URGENT WAKE UP AND TELL MACBETH TO ORDER DUNKIN' AND NOT MURDER DUNCAN.

Last night it was the face. Hoo boy, was it the face. And it was so borderline violent that it hurt ... and then it stung like an advanced-degree sunburn when the water hit it in the shower this morning. Which—if you see me today—is why I look like Hobo Santa because my cheeks are ultra-rosy and I'm now on my third day of not shaving and I don't care THAT much about how I'm going to look in the family Thanksgiving photos.

I take Gabatentin three times a day to help control the reason I'm extremely bad at stealing tambourines, but that is a six-paragraph discussion for another day. Key words: opiod epidemic

Anyway, this post started out as a few sentences about how my face hurt in the shower this morning and then I was going to show you all a photo of the Hershey's Kisses I bought last night THAT LOOK LIKE LITTLE SANTA HATS. Sorry for rambling on like this, but look at the Hershey's Kisses I bought last night THAT LOOK LIKE LITTLE SANTA HATS:

Abilify wathdrawal

Nobody told me it would hurt this much.

I'm back from my three-month checkup with my psychiatrist

And she still wants to keep seeing me every three months instead of the every-4-6-week schedule I was on a year ago. This might sound good to you, but it's HUGE to me and my family. The bipolar med cocktail that she's methodically calibrated for me over the last three years seems to be keeping me stable (though the 12+ miles I've been running every week since March might also have something to do with it), and of course the tireless, diligent support of my family and friends has been an enormous part of that success.

I'm so thankful for all of this—and all of you—that I splurged on a massive bucket of Diet Coke and two super-sticky apple fritters on the way to work. Even though caffeine and sugar probably undermine the efficacy of my meds and exacerbate their weight-gain side effects. But I'm pretty sure I can manage these setbacks.

Well, THAT was awkward

We were running along at a nice pace down the Cedar River Trail, the sky started thundering at us, the rain started ... and I started having my own flashes of light. And the gray sand washing down my face that I feel when I’m about to have a blackout episode. Because bipolar meds are fun.

This happens multiple times a day when I stand up too fast. But it’s never happened when I’m running. I tried to slog through it, hoping it would pass ... and I got about half a mile before I noticed I was zigzagging so I wisely let what little common sense I had left prevail and I stopped. It was mile 3.12, which was almost our turnaround point. But it WAS a complete 5K, so I deserve a medal.

You know who else deserves medals? Rob and Scott, who stopped their run and insisted walking the 3.12 miles back with me. I kept insisting I was fine. I kept insisting that they run ahead and get their miles in. But they kept insisting on being awesome friends and not leaving me. Those jerks.

I feel normal now. The flashes of light and gray sand are gone. But I’m frustrated and a little concerned and totally embarrassed about the whole thing. And very soaked from the rain.

Shit.

Yawn

When you accidentally took your night bipolar meds—which include the sedating Clozapine—instead of your morning ones plus you didn’t rehydrate nearly enough after your morning run so you’re profoundly sleepy and your entire body feels like an immolated corpse and you need all the stimulation and moisture you can get before work:

And on all days to screw up my meds, I had my three-month psychiatrist appointment this morning. I’m apparently still normal enough to be allowed to roam among the unsuspecting citizenry, but I’ve been having near-blackouts multiple times a day for months and my blood pressure is on the alarmingly low side of normal, so now I have another compelling reason—the other one being I’m 50 and need to be responsible and get a colonoscopy—to visit my GP.

I did NOT just talk about my colon on my blog. Did I?

Anyway, I’ll call to schedule an (yawn) appointment with my (yawn) GP just as (yawn) soon as I rehydrate my (yawn) cells and wake the hell (yawn) up.

Yawn. Colon.

Fire and music

When you apparently mention being bipolar too much on social media and it cosmically triggers a depressive episode that lands you in bed for 18 hours when you get home from work and it’s bad enough that you call in sick the next day even though you’re hoarding all your PTO for all your summer vacations but it turns out to be the right decision because you sleep long and rough and alarmingly sweaty and you eventually start to punch your way out of the wet wool blanket and see the light through the fog and your mom gets out your favorite mattress-ticking sheet to put on the couch so you can convalesce in the living room by the radio that’s currently playing a Fauré harp sonata which isn’t totally your thing but you still have some lingering fog so you really have bigger fish to fry which is just an expression because you don’t really like seafood where was I oh yes I had a damn depressive episode yesterday that ended up being worse than I’d expected and I always feel guilty calling in sick but these episodes have gone from one a month to about three a year and it’s better it happened today instead of tomorrow when I’d have to fight my way out of a fog on stage in my show which I’ve done many times before but it’s not ideal and it usually alarms my castmates so WHEW! to that timing and now the radio is playing a Rossini overture that’s filled with fire and music just like Eve Harrington which is way more my style and I have my mattress-ticking sheet and a feisty-cherry-flavored whatever the hell that means Diet Coke and I managed to take a decent selfie not that I have a lot of practice or anything and if I time everything just right this manically run-on non-sentence will post just ... as ... the ... Rossini ... comes ... to ... its ... triumphant ... CONCLUSION.

This shirt may be the best part of my day

When your damn hip injury seems to be creeping up into your lower back so you still can't run and it's a cool overcast day which is your favorite running weather but it's still your favorite weather for anything and your candidate won the Democratic gubernatorial primary last night and you found a totally cool stretch-cotton batik-print paisley polo this morning that you'd forgotten you had and your car is so totally clean and free of clutter that you can actually take a wide-view selfie to show off the back seat and even though you're a little bit bipolar-foggy today you're still functional enough to write a staggeringly long run-on sentence that technically has neither a subject nor a predicate but you're a writer and you can get away with such brazen linguistic abominationness plus you make up words with shameless abandon plus you end blog posts with needless prepositions at.

Why is the hold music at my psychiatrist’s office playing “Send in the Clowns”?

 Making my entrance again with my usual flair ...

Well, shit

When you get home from an amazingly awesome vacation and you set down your painstakingly-filled-by-your-mother container of bipolar meds divided into an entire week of morning and evening handfuls of pills and it slips and lands face-down on the carpet and pops open and basically her worst nightmare explodes right before your eyes ...

I seem to be having a bit of a bipolar depressive episode today

I’m functional enough that I’m at work, but I’m dysfunctional enough that I. CAN’T. FUCKING. SIT. STILL. Being bipolar is weird.

Plus my boyfriend won’t even talk to me.

I just had my six-week checkup

(I'm still crazypants biploar but things continue to be stable and we're not altering my meds this time, thanks for asking) and when my psychiatrist met me in the waiting room she asked me if it was OK if a residency doctor observed my visit and of course I said yes because I'm clearly not a hide-my-crazypants-biploarness person and when we got to her office and she opened the door and he was politely standing there waiting to shake hands and introduce himself OH MY GOD HE WAS TALL AND HANDSOME AND LET'S NOT MINCE WORDS HERE HOT HOT HOT and we sat down for my visit but I kept looking over at his let's still not mince words here sexy forearms because that's all I could see besides his face because he rudely wasn't wearing a Speedo and WHY ARE YOU SO HOT STOP DISTRACTING ME and we talked about all the usual stuff like my moods and my appetite and my feelings of control and my ability to concen OH MY GOD I CAN'T CONCENTRATE BECAUSE JUST LOOK AT HIM HE'S TOO HOT TO WALK THIS EARTH trate and any side effects of my meds (still lingering exhaustion, but thankfully it's not 24 hours a day like it has been) and is there anything else I think would be relevant to tell her WHY ARE YOU TALKING TO ME HAVE YOU EVEN NOTICED THE LET'S AGAIN NOT MINCE WORDS HERE HOT HOT HOT MAN WHO'S ABOUT TO BE A DOCTOR AND I THINK WE CAN ALL AGREE IT WOULD BE A VERY GOOD THING FOR ME TO MARRY A DOCTOR AND HE'S SITTING IN THAT CHAIR RIGHT THERE SO CLOSE I COULD STARE AT HIM FOR HOURS WHOOPS I JUST DID and I said that I've actually ramped up the activities in my life like Follies rehearsals and editing a massive book pro bono and making my bedroom renovation finally really start to happen and cleaning out the storage room in our basement AND WHY WHY WHY DOES THIS INSANELY HANDSOME MAN HAVE TO KNOW I'M CRAZYPANTS BIPOLAR PLUS NOW HAVE A DOCTOR-PATIENT RELATIONSHIP WITH ME BECAUSE THAT PRETTY MUCH GUARANTEES THAT'S THE ONLY KIND OF RELATIONSHIP WE'LL EVER HAVE BUT HOLY SHIT WE'D LOOK HANDSOME IN OUR WEDDING PHOTOS and she gave me some more free samples of my really expensive medication and we scheduled my next six-week visit AND FOR THE LOVE OF ALL THINGS GOOD AND HOLY MAKE SURE HE'S STILL RESIDENTING WITH YOU WHEN I GET BACK IN SIX WEEKS and I think we had a really productive visit.

I’ve had a couple am/pm mixups in the fistfuls of bipolar meds I choke down twice a day

Mom has now ever-so-subtly tried to fix my absent-mindedness:

Mom keeps a pencil on my box of meds

I take the pencil off after I've choked down my fistful of pills every morning and every night so if she's not there she'll know I've taken them. Then she puts the pencil back to remind me to take my next fistful 12 hours later. So I get a dose of love with my pills twice a day.

Mom can be smart that way.

I've had another bipolar depressive episode

Another [STRING OF BLISTERING EXPLETIVES] bipolar depressive episode. It was bad enough to make me miss work and stay in bed all morning. That's two in six days. Usually they're more than a month apart. Usually I can fight my way through more than half of them.

Usually I come out of them with a hopeful attitude that each one makes me stronger and teaches me how to better manage the next one.

Two episodes in six days. I know intellectually that things like this can happen when the dosages of my meds get changed. But emotionally I feel so defeated. And scared that I'll lose control like I did three years ago.

I'm not always brave about this. Not right now.

New magnetic poles

I tell myself I always know when a bipolar depressive episode is hitting me. I get achingly tired, but I also get TIRED. Despondent. Hoarse. Blurry. I can feel myself teetering off the precipice, but once I gauge the velocity of the free-fall, I know whether I can at least fight it or if I just have to give in, hide under the pillows and wait out the drenching storm. But at least I KNOW.

This morning I woke up profoundly exhausted. So I did my usual things that help pull me out of a rough morning fog: talk to my parents, eat something sweet, play on Facebook, start the momentum of my day by getting dressed for the gym and packing up my clothes for work. But ... nothing. I didn't feel like I was depressed, but I just couldn't un-tired myself.

My doctors have been making minute changes to the dosages of my psych meds since early summer (and if you've never had a cut-up fourth of a tiny, chalky little pill completely short-circuit your brain, you look like you're frolicking in the warm sunshine from the foggy window I've been peering through off and on for the last few months) and I've had plenty of exhausted mornings because of it. Again, in those instances either I've tried to push through and wander about the motions of my day or turn off the lights and hope I can sleep without the bipolar-attendant nightmares.

Today I gave in. I emailed my boss, I set my alarm for noon on the off chance all I needed was a half day of sleep and curled up in a ball. I could tell I was on the upswing when my alarm saved me from the amorphous demons prowling around in my dreams, but -- as is becoming the new pattern -- I couldn't gauge when or even how I was going to arrive back at normal. I just didn't KNOW.

Depression is not sadness. It's not a lack of happiness. The verbs choose and decide and control don't have anything to do with making it happen or making it go away. Depression is misfiring synapses and out-of-code wiring and we're still learning what else that cause fog and blur and despondency and sandbags and wet wool blankets wrapped around our heads and emotive responses that are completely unrelated to and sometimes completely inappropriate for the situations and environments and world around us. It's stupid. It's destructive. It's embarrassing. It's time-wasting and pain-causing and life-destroying.

It's exhausting. I'm exhausted. I'm STILL exhausted.

And the compass I've been using to steer my ship out of my exhaustion is suddenly fixed to new magnetic poles. And I don't know where they are. I can search for them only when I'm having a depressive episode, and I haven't located them yet. I. Just. Can't. Find. Them.

My life is pretty awesome right now. I'm surrounded by family and friends who love and support me. I have a job I love working for an understanding boss and a company I respect. I'm taking on writing projects that are big and small and fun and high-profile and just-because and I'm relishing every word of them. I'm not just doing tons of really awesome theater, but I also finally feel confident that I'm actually contributing to what's making it good. The city I grew up in and just came back to and will always love is rising from the destruction of a catastrophic flood to experience a full-on renaissance in everything from architecture to culture to public amenities to recreation to community redevelopment, and I love taking small detours and out-of-the-way routes and the time to stop and take pictures just so I can try to see and learn about it all. Plus I keep getting told I don't look anywhere near my age. Which when you're my age is HUGE.

Like all bipolar depressives past, present and hopefully not much longer into the future, I tell myself that I won't let my depression control me, that I won't allow it to interfere with my life, that I'm better and stronger and more willful than it is, that I'll never let it win. And through pharmaceutical powers whose lingering uncertainties and dartboard guesswork sometimes feel almost Medieval, through a potent mix of hope and willpower and sometimes desperation, through the immeasurably therapeutic benefits of broadcasting all my battles on social media and my blog, through the light that eventually pierces the fog to remind me about the wondrous life that awaits me when I get back to my normal—and especially through the tireless and certifiably saintly effort and devotion and support of my mom and the rest of my family—I've learned and I'm going to keep re-learning as the poles change how to manage this ... if not beat it.

After years and years of bipolar episodes that left me hidden in my bed, I still always feel guilty when I miss a day of work because of one. But it happens. And it's going to keep happening. And it happened today. Even though as of this writing the fog has cleared enough for me to write ten (and counting!) paragraphs about it, I'm still not sure what exactly happened today or where it falls on the exhaustion-depression continuum or what I was able to learn from it that I can use when the time comes to fight my way out of or give in to or maybe just try to manage the next episode.

But I have that awesome life to live. And I have that wonderful, fun, creative, educational job to go to. And I have lines to learn and music to memorize and tap classes to take and show tunes to listen to. And I have people counting on me. And I want to be there for them, for whatever it is they're counting on me for. So even though I'm still foggy and still trying to suss out a viable coping mechanism from today's episode, I'm up and moving and participating as hard as I can so I don't miss a moment of anything.

And this one-sentence closing paragraph takes the count to twelve.

Carpe diem

I was supposed to leave this morning for my annual summer vacation to visit friends in D.C. and stay at their best-porch-on-the-planet beach house in Rehoboth, DE, but I had to cancel a few weeks ago due to work issues. A lot of cool things have popped up on my calendar here in Cedar Rapids this weekend though, so I'm more or less OK with missing my trip.

But I still missed work this morning thanks to a rough descent into a bipolar depressive episode that started last night. I talk a lot about being bipolar, and every time I think I should stop someone messages me out of the blue to thank me for being so open and honest about it. Enough people have confided in me the stories of their struggles with mental illness that I sometimes worry I won't remember everyone in my mental checklist of kindred, struggling spirits. I've developed close, supportive friendships with a lot of these people though, and our check-ins and conversations and even drives across town just to give hugs are so dear and so valuable to me that I'll probably never stop talking about my own struggles.

So here's this morning's report: I woke up at 6:00 in a motivational black hole with a fiery headache and enough disorientation that I knew enough to skip the gym—which is huge because some days working out is the only thing that keeps me human—and to let my boss know that I'd come in after lunch, if at all today. Then I went back to the kind of non-sleep that feels like you're staying awake getting more and more exhausted compounded by the stress of feeling worried about getting more and more exhausted. But when I woke up around 11:00 my head was clear enough that I could look at the episode objectively and summon the coping and pushing-through skills I've learned over the last decade and I showered and ate and made it to work, where I've been surprisingly productive ... albeit profoundly exhausted.

So to all the people I know who are dealing with mental illness and to all the people I don't know who are dealing with mental illness and to all the rest of you curious enough about my struggles today to have read this far: You will fight this battle all your life. You will get meds that don't work, you will get meds that actually make things worse and you will find meds that you'll notice start to make improvements ... though you'll spend ages waiting cynically for them to fail you. In the mean time, learn what helps you stabilize yourself and what helps you push your way out of the wet wool blankets and the rolling fogs that trap you. As soon as I felt coherent this morning, I texted one friend who right now is in a bottomless depressive episode so we could both not feel alone in our struggles and I texted another friend who as far as I know is not having an episode just so I'd know that someone who deeply understands what I'm going through is at the very least thinking about me. And then I picked out a shirt that says Carpe Diem on it and I know that it's totally goofy bordering on stupid, but if I'm wearing a shirt that means something to me on a certain day or in a certain situation, I feel compelled to go out in the world and show it to everybody.

And after what my head put me through this morning, I need everyone to know—no, I need to SHOW everyone—that I'm seizing the hell out of the rest of my today.

In which I am a damn drama queen

I woke up in a mild bipolar crash that was still bad enough that it gave me a powerful headache and what felt like a fever. I decided to skip the gym to sleep so now I feel fat. Then I decided to take the morning off to sleep so now I feel guilty for missing work. Then I got a raspberry seed wedged in my teeth when I finally ate something. Then I somehow nicked the top of my ear while shaving the side of my face. Because WHO DOES THAT? Now I'm at work and I'm groggy but functional and here's a funny cat picture.

I hate it when the bottom drops out

and I have a sudden-onset bipolar depressive episode that abruptly shuts down my night and robs me of the opportunity to spend time with my friends and cast members.

I hate it that I sat immobilized in my car for 30 minutes tonight before I was able to summon the presence of mind to drive home.

I hate it that I keep getting crushes on straight guys.

I hate it that the arrogance and corruption and immaturity and willful ignorance and daily manifestations of ineptitude coming from trump and his vile, insular orbit are so pervasive and so ubiquitous and now so normalized that we all just roll our eyes after each bombshell and wait a day for the next bombshell, which somehow STILL doesn't land them all in prison.

I hate that I'll read this in the morning and be embarrassed that I posted it. But it's what's in my head, it's why I'm sitting at home in the dark right now instead of enjoying a late cast party, and it's my free therapy. And somehow I feel less bottled up and alone when I dump my thoughts and troubles out in the universe so I can sleep.

Good night.