Clozapine, and My Battle With Oversleeping

So frustrated.

My medication is incredibly sedating.  I have been struggling with oversleeping since I started Clozapine over three years ago, but this difficulty didn’t become marked until I started working full-time.

But all of a sudden now, it seems to have gotten worse.  I seriously am sleeping 11, 11.5 hours a day.  Last night, I went to bed at 9:30 PM, and ripped myself from bed at 8:30 AM.  I work full-time!  I don’t have a car, but instead take public transit.  2 gyms near me went out of business recently, so now I’m going to another one further from me that has only classes.  Translation: I get there whenever I do (via public transit), and then I have to wait ’til the hour to start working out.  I also am trying to keep a steady pace as a writer of essays and poetry, aiming for regular publications.
I was thinking of also getting back into playing the violin, given that the voices aren’t bothering me anymore when I play.  But alas… no time.

Fortunately, I work at an awesome agency.  And since I’m a peer specialist, my mental illness is out in the open and accepted.  There have been times when my job performance was not at its best, due to my struggling with relapse.  My bosses and coworkers showed incredible concern, and with their support was I able to pull through.

Today again, I called my boss.  I asked to do a half-day of work today, and he said that would be ok.  Thank goodness.  As soon as I could, I left home… at 9 AM.  (I usually start work at 9 AM.)  Then I went to the blood drawing center and got my blood taken.  I have to get my blood done every 4 weeks because of the Clozapine I take.  While it is a miraculous drug for me, it also can cause many complicated side effects.  It must therefore be monitored very carefully.

I’m seeing my psychiatrist next week.  I know it probably won’t do much good, but I’m going to ask her if I can lower my dose of Clozapine by a single, tiny increment.  I take 400 mg right now, and I want to try and lower it to 375 mg.  I think I can handle it.

Or maybe I should give up.  Throw in the towel.  Accept that I’ll never be fully “normal.”  I should just “learn to live with sedation without questioning it.”  Just “shut up and suck it up.”

When I attended the peer specialist training at Howie the Harp Advocacy Center, I learned that the voice of the patient actually matters.  I learned about the recovery model, which is the idea that recovery and wellness goes way beyond mere compliance with medications and a treatment plan.  It is not about “settling” for half a life.  True wellness is about living a life that is fulfilling and satisfying.  

And so now… I demand wellness.  And sleeping 11 hours a day is not my idea of wellness.
I know that my psychiatrist likely will not let me change the dose.  If this doesn’t happen, I’m not sure what to do.  She’s incredibly competent, so I am not keen on throwing her to the curb.  Many private psychiatrists will not accept me because I take Clozapine.  I’d say that most people who take this drug are profoundly disabled, so they get their psychiatric services from hospitals.  They typically don’t work full-time, so they have more time to devote to commuting via bus, more free time for appointments, etc.  

(I say this not to make assumptions about those who are disabled.  But I myself was in this position for several years, and so lived this way.  Thus, I speak from personal experience.)

I too was a patient at a specific hospital’s Clozapine clinic for 3 solid years, but I decided to leave once… things got bad.  See, my psychiatrist was always a resident.  I’d have the newbie doctor for 12 months and then, *poof!*  The doctor was gone, replaced by another doctor with again no experienced.  When I was assigned my fourth doctor, I realized… Something’s gotta change.  Especially since my circumstances had drastically changed within those 3 years.  When starting, I was unemployed and in psychiatric rehab programs.  3 years later, I was working full time.

Now I see a private psychiatrist.  It’s a miracle she puts up with me.  The Clozapine is very difficult to coordinate with the pharmacy.  See, first I have to get the blood work.  Then the results have to be faxed over to my psychiatrist.  If the levels are good, she writes me a prescription, and also fills out an extra sheet for me to give to the pharmacy.  It is illegal for me to get the Clozapine without this extra sheet.  Also, if my blood work is bad, then I have to get tested again.

It took a few months for me to adjust to this procedure.  I ran out of medication a couple of times, and had to go to the ER.  Also, I procrastinated the blood work, and so had to make some emergency appointments with my psychiatrist.  She’s truly a saint.  Most doctors would have abandoned me.

I write here now, so as to share with you the process I go through to simply remain mentally well.  I am at times envious, of those who have no need to jump through any of these hoops in order to live normal, satisfying lives.  Whereas I have suffered to get to this point.  Granted, I’m happy I’m well, but it took me a long time to get here.  I started taking medications when I was 14.  I was not stabilized on the “perfect” combination of drugs until I was 27.  And then I spent time in rehab, simply getting back on my feet.

I hope this process of figuring medications will take less time for people in the future.  So many years of my life were wasted, sitting in offices of psychiatrists who felt no guilt in offering me subpar treatment.  Watching me gain ninety pounds steadily.  Turning a deaf ear when I lamented that I wanted to work, but was too depressed to look for work.

This has to stop.  Psychiatrists need to hold a higher standard for themselves.  Because it’s not about sedating the patient into compliance.  It’s about improving the quality of life for a person.

I have faith that my future will be brighter than my days today.  And my days are already bright!  I hope that the sleep issue will be resolved soon, and that I can continue my merry way towards success and wellness.  As should everyone, for that matter.

Enter, the Music…

As much as I have written about mental health, and the necessity of its acceptance in the part of society, these writings only represent a small portion of who I am, and where I came from.

I was once a musician.  Skilled in my trade, and one of professional promise.

Training towards this career began at age five, when I started violin lessons at a local Suzuki school.  Of high caliber, to my benefit.  I had a private, one-on-one lesson once a week, and a few classes on Saturday mornings.  The latter was when I met the other students of my year.  Most were Chinese and Korean, and two years younger than me.  But it made no difference.  I loved music, and that was all there was to it.

Mental illness started to interrupt my studies though.  When I became depressed, I was too depressed to practice.  When I started experiencing voices in college, so too did the instrument start speaking to me.  The only way I could escape these disastrous situations, was to avoid music altogether.  A tragic compromise.

Indeed, for when I have tried to play even recently, my frame would shake, my brow developed an electrical sweat and my nerves, rattled.  An abstract experience to describe, but such is the irrationality of mental affliction.

But a miraculous turn has occurred.  I am now able to take up the instrument suddenly.  It has been twenty years, this former grief!

What happens to make this change?  Perhaps my reliance on the drug Clozapine, which never eases to do wonders for me.  The longer I am on it, the better it works.  I also have changed my attitude about music.  I first figured that I suffer from a phobia of the violin.  I then read that mental health professionals tackle phobias via Exposure Therapy.  Each time, one becomes gradually exposed to that which is feared, with more and more intensity, for lack of a better term.

And so… I and music.  Such is now my approach.  Such is now my cure.

I hope to get better on the instrument than ever before.  I hope to play it with the expertise of the best of professionals.

And still, my spirit of advocacy can stretch into my music making as well.  Because ever since childhood… I’ve despised pop music, and all the other genres one would hear on the radio.  As a five year old, I found tunes from the radio to be akin to baby music.  And while the masses may be entertained by it, it horrifies me that many simple tunes are more popular than that which requires more skill to create.

To create an analogy: I might enjoy a cardboard baby book as an infant, but I’m not going to read such books as an adult.

This is how I view popular music, in comparison to classical, as well as other forms that require earnest study.  Traditional musicks from cultures around the world fall into this respectable category, as does jazz.

But I think the fight against Top 40 is a battle long dead.  The war is over.  Classical music is merely something kept alive by elitists and specialist musicians.

Or is it?

I honestly think that rock music is bad for you.  See here: we always talk about organic food and being all natural with the crystals and the essential oils and the purified ionic water and crap… But what about organic sound?   Don’t you think it’s bad for the body, mind and soul to be pledging allegiance to electronic sounds, unnaturally vibrating within your head at 120 decibels?  And earbuds?  You think that’s natural?

I didn’t think so.  But I’m sure you’ll defend the honor of your favorite band, because they’re all rad and they said stuff no one else ever said before, blah blah.

See… This is why I’m not a professional musician.  The musical world today is so broken.  I am it strong enough to fix it.  Nor are there enough people in the world who want to fix it in the same way I want to.

Writing about this only makes me angry.  But maybe… maybe I developed mental illness because I, a very musical person, was surrounded by inorganic sounds?  By the age of five, I physically cringed with discomfort whenever I heard “radio music,” and was convinced that it was utterly evil.  CONVINCED.

Maybe this is another reason why people develop mental illness: inorganic sound.  What do you think?

All My Local Gyms are Going Out Of Business :(

Right now, I’m “wishing” I didn’t have a job.  Of course, this is silly, given that I love my current position.  But I’ve taken a few days off recently, and I’m enjoying the freedom.

And yet there is something I’m quite down about…

It seems that all the gyms in my neighborhood are going out of business.

***

Four years ago, I was at my heaviest, at 215 lbs.  I walked into a women’s gym in my neighborhood called Lucille Roberts, and just signed up.  I had no idea what to do, so I asked the manager for advice on how to work out.  I had so many questions, and she patiently answered them all.  By week 2, she gave me a diet plan to follow.  I faithfully exercised and ate right, and in the first month I lost 12 pounds.

Unfortunately, depression hit me after that first month, and so I stopped going to the gym.  But I still maintained the diet, and so I lost 50 lbs in about 6 months.  I then joined a kickboxing fitness class and lost another 10 lbs.  After this, psychiatric disaster struck, and I was in the hospital for three months.  During this time, I gained back 20 lbs, but no matter.  When leaving, I returned to Lucille Roberts and lost the 20 lbs again.

The hardest part of weight loss is maintaining it for the rest of your life.  I was able to maintain a weight of 145 lbs for a good 2 years… but it was really torturous.  I diligently wrote down everything I ate… which is a habit I’m trying to get back into.  But also, I was just neurotic.  I’d weigh myself 20 or 30 times a day.  I went to a weight management class, and the director basically kicked me out after a year.

And yet I needed the help, perhaps.  Since then, I’ve gained about 20 pounds.  I hover between 165 and 170 these days, which is not terrible given that I am 5’10”.  I’ve also maintained this same weight for about a year, so I guess I’m “okay.”  But I want to weigh less.  And I want to be more controlled with my eating.

Because right now, I feel out of control.  I buy and eat healthy foods, but at times I’ll eat too much of a good thing.  Like cashews, or turkey meatloaf.  Maybe too many power bars… I’ve got to cut that stuff out.  I bought about 8 bars for the week last time, and I ate them all in 2 days.  I bought a little pack of peanut butter, ate that too.  When I get hummus, I usually eat the tub all at once, but this time, miraculously it’s still there.  Probably because it’s spicy.

I didn’t used to have this problem.  In fact, I was a skinny kid growing up.  I always could eat whatever I wanted with no consequence.  This all changed when I was in my mid-20s.  I ate badly still, but started to gain weight.  In 2.5 years, I gained 90 lbs.

I’m healthy now, but I’m still just scared.  I want to be in greater control.  I want to lose those 20 lbs again, and get more athletic and “ripped.”  I want to be strong, and improve in my performance with Spartan Races.  (I’ve done 3 Spartan Sprints so far, ranging between 3.5 miles – 5.2 miles.)  I want to keep going.

I’m just discouraged though.  On May 18th of this year, my beloved Lucille Roberts gym went out of business.  I remember the last Zumba class I took there, on the 16th of that month… There was such a sad feeling of farewell in my heart.  LR in Bayside had such a lovely community of women, and now that community was to be torn apart.  I went to the gym on the 18th for the last class, but I didn’t have the heart to work out.  Many of the machines were gone, and the lockers were even ripped out of the walls.  It looked horrible, and I was crestfallen.

I joined another gym in my neighborhood called Bell Plaza Sports Club.  I remember the first time I went there too… There were men in the gym, and I was nervous and scared.  I longed for Lucille Roberts, and I even had a little solitary cry.  It helped.  Once I got over that, I made myself comfortable with the weight machines.  I realize now that I like machines and the elliptical more than I like classes.  After a couple of weeks, I got pretty comfortable at Bell Plaza, and was going there perhaps 5 times a week.  I liked where this was going.

And then on June 30th, the bomb hit: Bell Plaza notified its members that it was going out of business too.

Again, such sadness in me.  Another local community, gone.  Another business, gone under.  And another gym, gone.

I’ve been trying to figure out where to go now for my fitness needs.  There’s a CrossFit gym very close to my house, but I received an email from them saying that they’re going out of business too.  Where do I go?  There are other gyms in my area, but the locations are very inconvenient given that I don’t have a car.

I am so angry also… I think to myself:  Why is this happening?  I know that the rents are going up for businesses in my neighborhood, and so places are going under.  Of course, there is hearsay and gossip amongst people I’ve spoken to, but this is truly irrelevant to me.  There is just one dismal reality for me:  These gyms are gone.

And so I’m down.  I haven’t worked out in a few days.  My eating was not great these few days.  I have to figure out what I’m going to do.  I have kept my membership with Lucille Roberts, so I can go to other branches.  I’m going to go to their Flushing branch later today, although this is further away.  There’s also a local gym near my job, so next week I will initiate the “5-day free trial” with them.  Hopefully this will work out.

And yet I’m not sure.  I’m really not.  These little businesses are going under and are being replaced with more expensive, corporate entities.  Or perhaps just ritzier businesses with higher prices.  It’s sad.  And while I appreciate that the economy in my neighborhood is booming, it also means that the community will change.  Businesses will change, current residents will leave and be replaced by new ones.  And prices will perhaps rise.  I’m keeping my fingers crossed that this doesn’t happen, but who knows.  😦

Regarding my fitness, I have to figure out what to do.  I love gyms, because I love the community aspect of it.  I like working out with other people present, because it keeps me on track.  It keeps me accountable.  And it’s great to get out of the house!  Nevertheless, I’ve got weights and a Total Gym at my house, so I can work out fully at home on my own.  There’s a little gym in my building too, which I can use if I pay $80 for the year.  That has a decent elliptical in it.  And again, I have the Lucille Roberts subscription.

I also wish that gyms were perceived as being necessary.  More people should utilize them.  There should be a higher demand for them!  Exercise should not be a luxury.  It should be a necessity.  And indeed it is, quite frankly.  Gyms should be open galore.  They should be inviting, and people should want to go to them.  Not because “they’re fat,” or “they need it”… but gyms are genuinely nice places.  They are comprised of people within the community, and going there helps one to feel more connected to others.

My hope is that the general populace will become more motivated to exercise.  Again, not because of compulsion, but because of a sincere, positive desire to improve one’s health.  It’s a wonderful road to travel.  It’s a wonderful way to test and develop your inner character…

And it’s a great way to tap into that inner “hero” that lies dormant in our minds!  We watch movies that feature athletic heroes saving the day.  Video games of the same like.  Why not can we condition ourselves to be heroic in the same way?  I always think that the future of video gaming would be more interactive… as if a person themselves becomes the avatar they manipulate to fight evil.  That would then require one to get up off their butt and hold a game controller in the shape of a sword.  Of course… handicaps could be assigned, but I digress.

I hope today that I can start over.  Start writing down what I eat again… and keep doing it every day hereafter.  And that I can become more motivated in doing home workouts.  I know I did P90X3 at home for about 14 months straight… it improved my fitness level, but that was also when I gained the 20 lbs back.

Again… losing weight is only the beginning.  The hard part is keeping it off.