Checkmate

My 10-year old daughter and 12-year old son are sitting at the table behind me, playing a game of chess.  They are surprisingly strategic, and actually more likely to get through a game of chess without coming to blows than they would a game of Monopoly.  I try to pretend that I’m interested in their game, but to be perfectly honest, I’m too dumb for chess.  I can’t keep up with each piece and their various abilities.  So I sit by and occasionally throw out a “Good move, honey!” or “ooooh, you really got him there……”.

I can hear my son’s running commentary on the moves of his Queen.  He has had his sister’s King in “check” half a dozen times since they started, but she always manages to wiggle out of her predicament.  I’m fascinated by the way the Queen is the only piece allowed to move wherever she wants, as near or as far, backward or forward.  Yet as crafty as she is, she is often captured (at least the way my kids play).

Sometimes I feel like I have a lot in common with the Queen.  I can go anywhere, do anything, at whatever pace I like.  I can be powerful.  I have the widest range of abilities of any piece.  I can even survive (although barely…..) without my knight in shining armor on the board with me.  But I can be taken out of the game pretty easily if I’m not careful.  All I have to do is let down my guard and I’m a goner.  It’s flattering that the captured Queen is the first piece taken back when the pawn reaches the other side of the board, although that doesn’t happen very often.

But the Queen is feared.  I don’t want to be feared.  I want to be liked, plain and simple.  And nobody likes the Queen.  She’s conceived as manipulative and crafty, only interested in winning.  And that’s just not me.  It used to be me.  My life used to be about trying to get away with one trick or another, trying to think ahead and manipulate the actions of those around me.  But that’s not fun any more.  It’s hurtful.  And I don’t want to be that person.

I don’t want to be a pawn, either.  I don’t want to be the one taken advantage of, disposable and the always first piece sacrificed during play.   However, the pawn doesn’t ever move backward, only forward.  And in that regard, maybe being the pawn isn’t so bad.  I’ve spent the last year trying to move forward, instead of dwelling in the past and continually looking backward.

There has to be a happy medium in the game of life.  And I intend to find it.  I’m moving my piece forward, little by little, day by day.  I wish I could look into the future to see if I end up a winner.  But for now, I need to be content just moving my piece one space at a time, never backward, always forward.

Checkmate.

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I’m in Trouble…..

I was browsing this morning through selections at my local bookstore and I came across a new book by author Annalee Newitz. As I stared at the title, all I could think was,

“I’m in trouble. Serious trouble”.

The book is about “How humans will survive a mass extinction”. But there is a word in the title that will prohibit me from surviving any such thing, because the title alludes that I will have to rely on my memory to do so. For those of you who have also gone through ECT, you’ll know why:

The name of the book is,
“Scatter, Adapt and REMEMBER”.

I’m so screwed.

Post-ECT (or, “A Post about ECT”)

Among the things I hate to admit is the fact that I truly believe ECT is helping me.  How can something so uncomfortable and dreaded have such a positive result?

I had ECT yesterday.  I make myself physically ill with the anticipation leading up to it, and I know I have to totally clear my calendar for that day because I will be useless when I get home.  For starters, I can’t eat anything for 12 hours prior to the appointment because otherwise I tend to throw up and it’s not pretty.  Upon arriving for my session, I take a cognitive response test to make sure I’m “with it” enough to go through with the therapy.  I take a shot of oral meds to help increase the level of my seizures, and then another to keep my stomach acids from roiling.  Then I take a pill that falls in the same category as Dramamine to keep me from tossing up the rest of the meds.

After I’m plugged into the IV, I’m rolled on a stretcher into the “electricity room” (my name, not theirs…..) and get hooked up to be zapped.  I am put under general anesthesia every time (47 times now, but who’s counting!).  But none of that is the part that I consider uncomfortable.  It’s how I feel when I wake up.

I’ve not seen myself in a mirror following ECT, but I have a fairly good idea of how I look.  Frazzled, drugged, unable to comprehend.  But I know how I feel, and it’s not pretty.  I feel dizzy and nauseous, and I typically have a terrible headache.  The 7-mile ride home in the car is almost too long, because I feel so nauseous and cannot hold up my head.  Yesterday I actually fell out of the car when I opened the door.  I need assistance getting in and out of the vehicle, and the only reason I brave the stairs to get to my bed is because I don’t want my children to see me post-ECT.  It’s scary and ugly and sad.  So I receive help getting up that staircase and collapse in my bed unconscious for at least another 4-5 hours.  If I don’t sleep through the night, I might get up to find something to eat.  But I typically don’t have much of an appetite and it’s tough to move around once I’m up.  I eat simply because I need the nutrition and hydration; otherwise, I’d stay in bed.

Halfway through the night following ECT, I often wake up feeling like I’ve been hit by a truck, because every muscle in my body aches.  I’ve been told that’s because of the seizures.  And when I wake the following morning, sometimes my head feels a little thick.

But surprisingly, that’s it.  Most often, I wake up and feel great.  I feel positive and alert.  And when I consider what I’d gone through the previous day, I’m always surprised at how great I really do feel.  The nausea and extreme fatigue are gone, the anxiety and darkness leading up to knowing I needed to return to ECT is gone.  I feel really good.  It’s amazing how many things in life start off badly, only to be good for you somewhere farther down the line.  I find myself doing this a lot lately:  trying something hard and distasteful, hoping for a good result.  And ECT is a good example of this.  I hate it.  I truly hate the anticipation and anxiety leading up to it, and all of the nasty discomfort and pain that follows for about a day.  And then I’m good for 5-6 weeks before I am the one to decide it’s time to go back.  The good feeling is addicting.  And I’m willing to go through the bad to get to that feeling.  I’m willing to do that in all aspects of my life.

Who needs help?

I’ve previously shared on this site a few quotes from a woman named Glennon Doyle Melton, founder of “Momastery” and author of “Carry On, Warrior”.  I found one more I’d like to pass along:

“People who need help sometimes look a lot like people who don’t need help”

I think we all have pre-formed images in our minds of what a “helpless” person looks like.  I honestly believe that many people might view me as someone who is fairly put together – in fact, when I’ve confessed my bipolar to people, I often hear, “Really?  I never would have guessed!  You seem so “with it”!”  But, in fact, I’m far from “with it”.  I’m an internal wreck.  I put on a happy face and push myself through my days, hoping to make it to the end of the night without losing myself in my illness, my misery, my dread and fear of what my future holds.  I do it for my kids, because it kills me for them to see me not operating at full capacity.  They need stability and reliability in a mother, and I wear a mask all day that tells the world how together I am, that assures my kids that I can be a good mother.  They know I’m sick, but they also believe I can do everything, and they know that I will will do anything for them.  In truth, I can barely help myself, which leads me to wonder how I’m every going to effectively help them?

When I crawl into bed at night, after my kids are safely tucked in, I lay awake lonely and scared, wondering how I’m every going to get through the next day.  I psyche myself up, hoping to convince myself that if I can get through today, I can get through tomorrow.  It works – sometimes.

But ask for help?  Forget it.  Never.  I publish this post anonymously because I don’t want people I know to find out I’m barely getting by.  I don’t want anyone to learn that I am scraping by mentally.  Would I love for someone to reach out and offer help?  You betcha.  But how will they ever know unless I ask for it?  Because I don’t look like the kind of person who matches the image of someone society pictures as needing help.  So nobody offers.

It’s my own fault.  Don’t ask, don’t tell.  I’m not ashamed of the stigma attached to bipolar.  I’ve rambled on and on to people about bipolar and how important it is to have awareness of mental illnesses.  But not unless I’m asked.  Which brings me back to my original point:  nobody is going to ask because I don’t look like I need help.  Lots of people in my town know I am bipolar.  They just don’t know I suffer from it.  See the difference?

If you have a friend or acquaintance living with mental illness, please reach out.  Ask if you can help.  Chances are, she’s dying to talk to someone.  She’s desperate to be offered assistance, or even just a shoulder to cry on.  But she’s not going to ask.  Not ever.  Believe me, I know.

Namaste (strike a pose)

I went to a yoga class last week.  For those of you who know me, you might be surprised to hear that I made an attempt at exercising.  But I’ve been told by so many people lately that yoga would be therapeutic.  And again, for those of you who know me, you know I’m willing to try anything.  I thought to myself, “what can be bad about a sport for which I can be barefoot?”

What I learned is that yoga is not for lazy people.  Thus, it was kinda difficult for me because I don’t like to work hard.  Now please don’t get me wrong – I am a hard worker.  I just don’t like it.  I felt great for the first five minutes of the class – soft, soothing music, dim lights, lying on a soft mat on my back wiggling my toes while breathing in the smell of the scented candles.

Then the real work began.  Enough with the stretching, it was time to get serious.  Suddenly, I was no longer relaxed.  I was sweating.  While in something called Sphinx position, you have to look down at your hands, which are supporting the majority of your weight, and all I could think was how badly I needed a manicure.  I was unfocused and definitely unrelaxed.  Yoga seemed like a variety of moves through what sounded to me like a three-ring circus:  the camel position, the cobra, the downward dog.  We moved from cow position to cat position, back to cow, and back to cat.  I realized I’m really more of a cow than I am a cat, feeling completely ungraceful and heavy.  If there was a “bull in a china cabinet pose”, I’d be really good at that one.  The best part about yoga so far?  I was told that I could relax my stomach muscles – finally, I had found a place where I didn’t have to “suck it in”.  But when we flipped to our backs for another animal pose I can’t recall, the tag in my pants was digging into my lower back and I couldn’t concentrate on what I was supposed to be doing.  I was thinking of how looooong an hour class seemed to be lasting, and how I couldn’t wait to be done with this torturous exercise.  The soft music had taken on a droning foghorn effect and just because the volume was low doesn’t mean it wasn’t suddenly incredibly annoying.  I was worried about what position she would require next – could I do it?  Would I tumble over mid-“Warrior” and humiliate myself?  I kept praying she’d command us to assume “child’s pose” (my favorite so far) just so I could get a little break.

The instructor had a soft, soothing voice and throughout the class, she reminded us to “just breathe”, to stretch ourselves farther “little by little, inch by inch”.  Funny, she sounded just like my therapist telling me to proceed through my life “day by day, little by little, one step at a time”.  My therapist is always reminding me to “just breathe”, and to stretch myself a little bit farther every day.  The instructor also kept telling us to “open your heart”.  Well, that’s one thing I certainly wasn’t going to do.  I’d opened my heart plenty this year, and it’s gotten me nowhere.  And it hurts.  Forget about it.

Just when I thought it couldn’t get worse, the instructor had us lie on our backs with our legs straight up in the air.  I’m thinking, “I can do this.  This isn’t so bad”.  That is, until she came around and placed 10lb sandbags on the bottoms of our feet, which were now pointing up toward the ceiling.  Things had started to get easier, and an uncomfortable weight is suddenly added to my already-heavy burden.  Yoga hurts.  This class was starting to mimic my life.

I started off my recent life thinking things wouldn’t be so bad, that I can get through this.  It starts off slowly and calmly.  And then I’m forced into a number of uncomfortable positions, carrying around a heavy weight and having a hard time taking slow, deep breaths.  I’m completely unwilling to open my heart, and nervous that I won’t be able to handle what comes next.  My inability to be flexible is holding me back.  I am trying to proceed “little by little, inch by inch”.  I’m trying to remember to “just breathe”.  I’m set off by small annoyances like a scratchy tag and bad music.  And then there’s the pain.  Much like my first experience with yoga, I find that life hurts.

But at the end of the class, we did something called “shavasana” (which, incidentally, means “death pose”).  We all laid on our backs and stretched out our arms and legs, and were instructed to simply “relax”.  We were told to let all of our worries fall away from our minds, to relax each muscle from toe to finger, one by one.  To let each bone in our spines sink into the floor, one at a time.  The instructor spoke softly, and led us in slow, relaxed breathing.  For the first time, I felt like I could take a full, deep breath.  My eyes closed and I was suddenly less annoyed by the foghorn music.  My body was cooling off and I felt very relaxed.  It was magical.  I felt calm.

I didn’t want to get up.  But when I did, the instructor provided us with a closing blessing:

“May you find peace above you, peace below you, and peace throughout your body and soul.  Namaste”.  It was lovely.

For the record, I’ll be back at yoga this week.

Namaste.

Latuda and its Happy Side Effect

I want to share with you the success I’ve had with a new medication.  I know a lot of you are frustrated with your meds and their inability to treat multiple symptoms without uncomfortable or dangerous side effects.

Most of you with bipolar are aware that there are only two medications that are FDA-approved specifically for treatment of bipolar disorder:  Seroquel and Lithium.  And many of you may have tried those two meds, with little or no success.  I fall into that category, and for several years I have bounced around between various prescriptions, trying a combination of this and that, hoping for some success.  I was looking for a medication that I could take singularly, without having to take a separate pill for each of my symptoms.

I think I’ve probably tried just about everything on the market, or combinations of those meds.  The aforementioned Seroquel and Lithium, along with Abilify, Tegretol, Prozac, Zoloft, Celexa, Cymbalta, Lexapro and Topomax all had their positive attributes.  Most of them treated one of more of my symptoms, but one alone was never enough.  I needed something for the depression, anxiety, sleeplessness and mania.  None of these seemed to be effective on its own, so I was always taking more than one pill at a time.

More frustrating than having to take several pills a day were the side effects.  I lost weight and gained weight, my hair fell out in clumps and my vision blurred.  I woke up several times during the night, or couldn’t wake myself in the morning without severe grogginess the rest of the day.  I had dry-mouth and night sweats, headaches and swollen hands and feet.  I had the shakes and increased  anxiety, short temper and extreme fatigue.  Some of the medications decreased my mania, but increased my depression.  The commercials for anti-depressants that said, “some people taking this medication may experience increased feelings of depression or thoughts of suicide……”?  Those disclaimers were meant for me.  It was incredibly frustrating.  I couldn’t believe scientists could put a man on the moon, but they couldn’t come up with a singular treatment for manic depression without the horrific side effects.

Eighteen months ago, I finally settled on a combination of ECT, Tegretol and Ativan.  The ECT treated my mania very effectively, and I continue still with those procedures because it is the only treatment I have found that stops my mania in its tracks.  The Tegretol made me fairly sleepy at night, but I still needed the Ativan to keep me asleep until morning.  However, after about a year of the Tegretol, I started experiencing chronic aches and pains every time I laid down.  Sleeping (if you can call it that) became very difficult.  I woke several times during the night with what the doctors initially thought was “restless leg syndrome”.  I saw a rheumatologist thinking it might be arthritis, and was then referred to a neurologist only to learn that he believed it was drug-induced lupus.  The only way he could be sure was for me to discontinue use of the Tegretol.  After taking nothing but the Ativan for about 6 weeks, I did start to feel better, but felt slightly depressed because I knew I couldn’t go back to the drug that seemed to work best for me.  I was then put on Abilify, which I found to be very effective at quickly treating depression.  Within a week, I felt my spirits lift a bit, but unfortunately I gained quite a bit of weight in a short amount of time and had constant muscle twitching in my hands.

That’s when a medication called “Latuda” was suggested.  Latuda is a fairly new drug with no generic that is being used “off-label” to treat bipolar disorder.  It’s actually a medication used to treat schizophrenia, but has shown significant benefits for bipolar patients.  My doctor told me that the FDA has not yet approved it for manic depression, but he thinks that might be right around the corner because of its success in treating the combination of depression and mania.

What side effects have I experienced from Latuda?  Well, it doesn’t make me groggy and the first couple of nights I took it I felt light nausea, but that went away quickly.  I have to take it with protein or it won’t work as effectively, but other than that I’ve noticed few negative side effects.  I have felt much less anxious, and I have not yet experienced that heavy weight of aggression, anger and anxiety that builds up and inevitably leads to a manic episode.  It is those symptoms that send me to ECT, and I’m hoping that if the Latuda remains truly effective, I might be able to limit or even eliminate ECT from my treatment plan.

More importantly is the positive side effect:  I feel happy.   Yeah, you heard me right.  HAPPY.  I’ve only been taking this medication for about two months, but so far I have felt better on it than on any other prescription or drug combination.

I’ll keep you posted on my progress while taking Latuda, but I wanted to throw the name out there in case any of you are as frustrated with your treatment plan as I have been.  Maybe ask your doctors about it?  It’s the first medication I’ve found to be truly effective in treating nearly all of my symptoms of bipolar disorder and just knowing that I may have found “the one” makes me feel better already.

Fractured Fairy Tales

My 4th grade daughter is writing a fairy tale for class, but the students have been instructed not to create a story in the traditional “happily ever after…..” manner. Instead, they’ve been asked to compose a “fractured fairy tale”. The teacher cited some examples: Cinderella gets a blister from the glass slippers, the gingerbread man is not gluten-free, and Jack falls from the beanstalk and needs a hip replacement. And then there’s the princess who kisses the slimy frog after he promises he’ll turn into a handsome prince, but after receiving the kiss, the frog tells the princess she’s a sucker and hops away laughing.

Fractured fairy tales. What a concept. As a little girl, fairy tales were wonderful to hear. I based my future dreams on the outcomes of these short stories: the sad princess discovers her handsome prince, he saves her from the terrible ogre and he whisks her away to his beautiful castle where they live happily ever after.

Up until a year ago, that was my life. I met my knight in shining armor shortly after losing my brother, and he saved me from the terrible ogre that was depression and heartache. We bought a castle together and filled it with two beautiful princesses and a darling prince. We had dreams of “happily ever after” in which we would spend the rest of our lives together, as happy as was humanly possible. People were envious of our beautiful life. They commented on how our little family “had it all”.

But “all” included a queen with a terrible secret. My secret was my bipolar disorder. I hid it from everyone, including myself. When I was “officially” diagnosed a few years ago, my handsome prince begged me to seek help. He read books on the subject and sought out the best doctors for my care. He tried to slay the dragons for me. But I refused his help because I didn’t want to admit that I was sick. And I let my disease rule my life. And I chased away my shining knight. My shame and denial helped me ruin my fairy tale life.

My life will never be a fairy tale again. My children wish for an “intact” family that will never again be together. My dreams of growing old happily with my husband by my side will never be realized. I cannot afford my castle. I pray every day that this is not my life, that a kind sorceress will wave her magic wand and make everything okay again. But I don’t know any good witches with magic spells that can fix my story or its ending.

My life is a fractured fairy tale. But that doesn’t mean I can’t create my own “happily ever after”. My story is just going to have to take on a new look, and my future will be going in a different direction than I had originally planned. But I vow to still be happy. Even if I can’t use pixie dust to help me get there.

The End.