Recent Journal

Situational depression.  That is where I stand right now.  Perhaps it would be a good idea to ask to have my antidepressant increased.  I am beyond frustrated, beyond pissed off, beyond tired.  I spend so much time in bed and so little time doing anything else I think it’s getting to me.  I feel I have no one to trust, no one to confide in.  And yet, even though having those things would help my health, they find no reason to make it priority.  Perhaps I have too high of standards for people.  Even with that in mind, I refuse to lower them.  I need what I need, period, and I (and everyone here) deserve better than this.  We deserve to have people giving us medication that know something about them.  We deserve people who give a fuck about the residents here, not people preoccupied with covering up problems and worrying so much about losing their job they don’t even fucking do the exact job that they’re paid to do.  You’d think that with all this going through my head I’d be more angry than sad.  But, unfortunately, the sadness is winning out.  I’m sad because no one hears what I say, or cares what I say, no one takes the things I say seriously.  I am very quickly losing hope.

That is the basis for deep depression:  Hopelessness.  Another pretty good indicator that I will be heading down that path is a feeling of powerlessness.  Those two words sum up my feelings day by day here.  I am a single pawn being used in multiple games of illusion and hierarchy.  If there’s anything I hate more than being powerless, it’s being toyed with.

Shorter Journaling (Updated)

One day I was driving…somewhere.  Some time before that I had accidentally killed my cat, Stripey, by rolling all the windows in my car up before a storm in the summer and then I did not drive for several days.  I had thought that he wasn’t coming inside every morning like he usually did because we had just brought some kittens and he had shown his unhappiness about the situation before he went outside that last time.  I simply hadn’t needed to drive for about four very hot days.  My brother found him under the seat, dead.  I still hold onto the guilt for not checking if Stripey was in the car before rolling up the windows.  My family tried to lie to me and tell me they found him hit by a car in the street.  Then they tried to convince me to take another one of our cars to…wherever.  When I insisted on knowing why, they told me the truth.  I had to live with the smell of my dead cat in my car until it broke down a month later.

Back to my story…one day I was driving…somewhere.  I was calm and the drive was going well, no problems.  I didn’t realize until after I had put my hand in my lap to pet my cat what was really going on.  It was a psychotic episode.  I physically felt the pressure of my cat laying in my lap, the warmth on my legs, and my mind actually believed it was there, until I put my hand down, to find it all an illusion.  Until that moment, the moment I realized he wasn’t really there, I had been content, even comforted by the psychotic tricks my mind was playing on me.  I started to cry when I fully understood what was going on.  This happened several times in the following weeks.  Sometimes I was even able to catch myself before I reached my hand down to pet…air.

Some people may see this as a religious experience in that it was the ghost of my poor cat riding along with me in the car.  That’s great for people who believe in such things, and especially for those of sound mental health.  I do not see, hear, feel, or believe in ghosts or spirits.  God does not speak to me.  I have schizoaffective disorder and I have hallucinations and delusions.  As unfortunate as it is, it is reality.  When people ask me if I think maybe I have a connection with “the other side” or aliens, I usually inadvertently laugh at them.  I don’t mean to hurt anyone’s feelings, but, to me, they sound as absurd as some of my delusions.

While I have had my share of delusions and hallucinations, there are some that are recurring.  I tend to suffer from the delusion that people find me annoying and that I am bothering, well, everyone.  This usually leads me to say "I'm sorry for bothering you," repeatedly, which of course causes people to actually be annoyed by me.

When I am symptomatic I usually fixate on the floor or the walls of wherever I am.  I hallucinate that the surfaces are constricting and expanding, almost in a way similar to your lungs rising and falling.  I also often hallucinate in a strange way that I see wherever my eyes are looking to be brighter than my peripheral vision.  It's like a spotlight is shining right where I'm looking and moves as my eyes focus on different places.

Psychiatrists and therapists frequently ask schizophrenics if they are "hearing voices".  I will admit that perhaps half a dozen times over the years I have actually heard an unfamiliar voice speaking to me that was not there.  Mostly, however, I hear people talking to me or music that is familiar when there is none.  I hear voices or music in other noises such as water running or a heavy wind blowing.  It's not an easy thing to understand.  I can best describe it by explaining it this way; when I hear the shower running (when I'm symptomatic) I sometimes hear people talking as real as I hear the water running down.  I turn the water off and realize it's not real, just to start it again, with the same result.  Another example is hearing my cell phone ring or vibrate in the middle of the night, when in actuality it's not even on.

Another Journal

It’s true, I’m in placement.  Sometimes I sit here and wonder how in the hell I got here.  Things aren’t the same as when I ended up in placement before.  I feel good.  I’m having only minor symptoms that have stuck with me through almost all medication changes.  Mostly thought withdrawal and mild paranoia, even a stray hallucination or two.  But this is extremely manageable, an improvement from what I have been feeling for years.  Sure, the meds sometimes make it so I can make it through, but this time I feel actual contentment, even if I am stuck in this RCF with no one to talk to but the staff.  While I sometimes find myself bored and sometimes even lonely, I got through a baby sighting without having to spend more than one day to myself.  It’s almost unbelievable.  What’s even more unbelievable is that this might actually last.

I know what you’re thinking, that I’m manic, right?  Wrong!  No euphoria, no endless optimism, no bad decisions, just contentment.  I have had thoughts hoping for mania.  Hey, I’m human!  Who wouldn’t want to feel (metaphorically) like they’re having an endless orgasm?  I thought there for awhile, when I first got here, that I may have a mania spell.  I wasn’t sleeping (due to a side effect of the Latuda) and that usually leads to a crash, which then usually leads to a manic spell.  Other than hoping I would feel that addicting euphoria I knew I didn’t want to make the same bad decisions I made in the other RCF.

When I was at my previous placement, three years ago, I went through a roller coaster ride of emotions and moods, including one lasting spell of mania.  As I have done in my past, I found the worst possible person for me and decided they must be mine.  This instance it was a 38 year old looking for a mommy.  It would be so much simpler if I could just let them go when the mania is over, but no, then I have to take care of them, because that’s just what I do.  While I helped this man better his life, the relationship only hurt mine.  I finally woke up and let him go.  His words were, “I don’t think you know what you’re doing.”  Trust me, I knew exactly what I was doing:  Dropping dead weight.

Perhaps now that I am finally more aware of the recurring patterns in my illness I will be able to keep my contentment, perhaps even ward off falling off the deep end and landing in the emergency room.  The awareness of how my actions were affecting my family and those I cared about turned me so far around, and perhaps this awareness will put me that much closer to managing my illness the right way.  It’s easy to say when I feel good, I know.  People just don’t seem to understand how hard it is to use coping skills when it takes all the energy you have to just take your medication when you’re down that deep in depression.  They don’t understand how hard it is to make the right decisions when you feel so good making the wrong ones when you’re manic.  Could you really force yourself to take that prescription that would end the best feeling you’ve ever had?  And then, could you hold in the tears when you make the right decision and it’s over?

Knowing what I do now, while I’m healthy, will hopefully carry over into when I have “mood swings” or psychotic symptoms.  Experience counts for something, right?  Maybe I don’t have to give up on all of my dreams.  And who knew that being forced to focus on the small things would lead to new dreams.  A step toward acceptance?  It’s possible, I suppose.

I venture to wonder who I would be without this illness.  I believe that I certainly would do great things and help people, but I don’t think I would be this passionate.  I would most likely have had a family and a high paying job, but I wouldn’t meet some of the most amazing people that I’ve met, even briefly, along the way.  I would never have appreciated the parts of myself that have begun to shine as I’ve struggled this far, something I easily forget when the depression takes over.

Some people say that if they could go back and change their life, knowing what they know now, they wouldn’t change a thing.  I don’t believe them.  There are certainly things I would change if I could.  But as much as I hate to think about the future, I hate even more to think about the past, especially the idea that I could have done something differently.  As much as I hate it, much like the rest of the world I replay so much over and over in my mind; the conversation I had with the social worker, the reaction I had to the doctors, choosing the donut over the fruit.  There is very little that quiets my mind.  It’s hard not to get caught up in the thoughts.  In my mind I’m reminded of a nurse telling me to use my coping skills. Ah, yes, coping skills.

I believe that everyone’s list of coping skills should be different.  I have a list as long as my leg and like many things I can give you ten of them off the top of my head.  This, what I’m doing now, is one of my coping skills.  When I’m thinking things in my head sometimes they sound so eloquent that I feel I need to write them down.  I wonder sometimes what the world would think if they really knew the thoughts in my head.  Here they are, where no one reads them, but just putting them to “paper” makes me feel better.  It’s like talking to a therapist that doesn’t argue with you.  Arranging the things in my head in an understandable way leads me to think more clearly about what I’m writing.  Clearer thoughts = easier to process. 

Today, to fill time, and to free me from persisting thoughts, I used another one of my coping skills:  Painting.  I don’t have the imagination most of the time to start on a blank canvas and come out the other side with a beautiful, elegant picture.  Instead I paint wooden things, useful things, from the craft store.  This I started in the hospital, like many things I do with my free time now when I’m not in the hospital.  Focusing on the painting clears my mind and keeps my hands busy.  Making jewelry is something I also started in the hospital that gives me the same benefits.

What they don’t tell you in therapy is that there are negative coping skills.  My go-to coping skill is picking at my fingers.  I pick at hangnails and my cuticles or anything a little dry that could turn into something bigger for me to pick at.  I’m not proud of it, and I do things to try to lessen how much I do it, like paint my nails and keep my hands busy.  The thing is, picking at my fingers relieves stress, that’s why it’s a coping skill (be it a negative one).  It’s a negative coping skill because it also causes me stress.  People notice me picking and it makes me self conscious, plus the physical damage it leaves is embarrassing.  It’s not something I would recommend for a stress reliever.

Part of the reason I am here, at this facility, is because I tried another negative coping skill that many young people resort to.  I am not advocating for this and I don’t recommend anyone try it, it’s not worth it.  I cut myself on purpose, with no intent to commit suicide.  I was deeply depressed and looking for a way to feel better.  I was trying to just make it to my next doctor’s appointment.  I instantly regretted what I had done and went to the emergency room.  That put me in for a stay in the psych ward.

Next Journal

Tears of disappointment were streaming down my face.  Not just because I am stuck here, but because I realized I really couldn’t rely on anyone.  I’ve been told over the years of therapy that just because I take such good care of people that I shouldn’t expect the same in return because of almost certain disappointment.  It took me years to figure out that I was being almost too reliable.  I did so much for everyone else, regardless as to how it affected me and especially my mental health.

The word hanging in the air is guilt.  Guilt has been pounded in my head since I was a child.  It was my mother’s favorite way to teach us.  And, of course, it’s not only her that can play to my weakness.  I’ve been used and tossed aside by all types of people.  I feel guilty for not helping other people when they need something.  It can be the tiniest thing, such as opening a door for them, or so much that it takes everything I have, like helping an ex-boyfriend adjust to being single.  I feel guilty for being sick because it puts a burden on others.  Guilt is the prison I have been living in and I have started to saw through the bars.  I’ve cut people from my life that drain every part of me.  Hell, I’ve cut people that I just can’t stand to be around and take care of anymore.  I’m working on trying not to hold myself to the unbelievably impossible standard that no one can achieve.

I have to start realizing that the world will not fall apart if I don’t hold it up with my own two arms.  Therapy would be good, but alas, for now at least, this is my therapy.  This, and talking to the social worker about just about anything.  I even feel guilty for taking up his time.  It’s nice to have someone who is willing to listen, even if I have to pay them to do it.  I know it’s his job, but it’s kind of stretching the limits of his job description to talk to me about things that don’t pertain to my care.

While I cannot have children, my brother has managed to knock up some girl.  She hasn’t even been his girlfriend; she’s just some girl that spent a few nights with him.  I am going to be an aunt around October.  She’s only eight weeks along and with Kayla’s miscarriage I hesitant to get excited.  I have told my case manager that I would like to stay around the city my brother lives in to make sure I get to be near my new niece or nephew.

Feeling good for so long is something I haven’t felt in years.  I still have traces of my illness here and there, but for the most part I feel healthy.  I just need to get out of this place.  My dad says I always say that when I’m in placement.  My response is that I don’t belong in places like this.  While doing an assessment with the social worker yesterday I realized that I only have conversation of real length with staff.  It made me take a step back and look at how I perceived myself.  I like to think that I don’t consider myself superior to the other people here, just different.  My inability to enjoy most of the people here could possibly be just my yearning to spend time with people with higher intelligence or with insight.  Perhaps I am just as guilty as society by expecting them to function and act like “normal” people.  I have to remind myself that they have mental illnesses just to get through most days.

Being in my own room has added a lot to my pseudo-contentment.  Not being able to block out auditory stimuli especially makes it hard for me to handle the noise of another person in my bedroom.  Not to mention the control issue.  I want things a certain way and become easily annoyed when things differ from that set of parameters. 

Being in this environment is doing numbers on my mind and body.  Being sex deprived is not something that I’m very comfortable with.  My dreams seem to have a sexual subtext regardless of the theme.  I know that many people face low or no libido with their antidepressants and antipsychotics but unfortunately for me, being in this situation, I do not have that luxury.  It’s true that I do have a lower sex drive than when I’m not taking my medication but to my dismay it only puts me at the level of normal people (from what I can tell).  Doctors and staff in hospitals and in placement seem to put any idea of a patient having a right to a sex life to the back of their mind.  It doesn’t seem to register with them that we are people just like everyone else.  And I hate to use the overused “I have needs” statement but what else is there to say?  It seems to be the same with the mentally ill and the elderly, people don’t want to think about them having sex so they just simply pretend it’s not an issue.  Trust me, it is an issue, especially in coed RCFs where people are, for a lack of a better word, stuck for a long period of time.  Administrators and other staff will have to deal with this issue eventually.  Perhaps if there were more high functioning mentally ill patients fighting for rights in this area they would have to deal with it more sooner than later.

It has been a terribly long day.  The weekends are usually long around here, but with a change in med times and the situation at lunch today, the day just seemed to drag on.  There was a baby here during lunch today, the lunch lady’s grandson.  He is a beautiful five months old.  I could hear the cooing and laughter from outside the kitchen door before we even went in and I knew what was going to happen.  I had a hard time keeping my eyes off the baby while I kept my physical distance.  Did I mention he was beautiful?

I ate as quickly as possible so that I could come to the safeness of my room to cry.  It’s wasn’t like the other tears I’d shed in here, from loneliness or disappointment, but deep aching tears of grief.  Not being able to have children still makes me feel like I’ve lost a million best friends.  They say it gets easier with time, that the grieving process just has to take its course.  I honestly don’t know if I’ll ever get to the acceptance stage. 

While I was holding in my sobs today I remembered that one of my favorite nurses is due soon with her first baby.  I remember being on the ward and staring at her belly from across the room, wonder how it felt to hold your child inside you, know that you are nurturing it every minute of every day.  And of course with every hospitalization and doctors visit, even this placement, brings up the questions:  “A tubal ligation?  But you’re so young!”, “How many children do you have?”, and the ever popular “Don’t you want kids?”.  I will admit that I have come a long way from when I made the decision to have the surgery.  I was sobbing so loudly in my room that several patients stopped to ask if I was ok and then a nurse came and shut the door.  She said I was scaring other patients. 

As always, today I tried to soothe myself with my logical, ethical reasons for not having children.  Believe it or not it’s never really helpful.  It mostly makes me feel guilty for feeling so sorry for myself.  I’m not sure how that makes sense, but while I like to think that all my thoughts and feelings are rational reactions, I’m not that naïve.

As I have many times in the past I recently started to doubt my diagnosis.  As I looked back over the ups and downs of my life I began to wonder if I was simply bipolar with symptoms of psychosis.  I usually begin questioning or re-evaluating the validity of my illness when I feel healthy for any period of time.  It shouldn’t be surprising when I add that many people in the past have questioned whether I was truly having psychotic symptoms.  It is things like this that lead many people to stop taking their medication.  Luckily (and somewhat unluckily) , even though I sometimes question my illness, I have distinct memories of hallucinations when I was not having mood problems.

What reaffirms my belief in my diagnosis is the thought disorders that I have that are classic of schizophrenia, many of which I always thought were normal.  The one that comes to mind the most is thought withdrawal.  Thought withdrawal is pretty much how it sounds, you lose your thought.  It’s not like you forgot what you were talking about, but it’s as if suddenly you never knew at all. 

Another thought disorder, that I don’t know the name for, that I suffer from especially when they are adjusting my medications is losing the meaning of words.  It’s not that thing where you say a word so many times it doesn’t have a meaning anymore.  It’s like as the words come out of your mouth your mind loses meaning and suddenly you’re not sure what you said, or if it made sense to anyone else.

The most obvious time I can think of is when I suffered from thought withdrawal was when I was in the hospital (when am I not, right?) and we were playing one of my favorite games, Rummikub.  It is a game with tiles that is similar to the card game Rummy.  The different between Rummikub and Rummy is you can move the tiles around to make new groups or runs.  I had been playing well, making complex moves along with simple ones.  Then suddenly, as I began my turn and had moved several tiles, my mind went blank.  Not only did I forget my elegant plan, I couldn’t understand how to play any of my tiles.  This lasted so long they had to move on to the next person with none of my tiles being played.  I wanted to cry, I was so unbelievably embarrassed.  My brain had failed me, and when it’s your brain that you can’t trust, what can you?  I still have instances where I lose a word and have to use its definition instead, which is also frustrating.  These things make me feel like a babbling fool.

Journal from Late March

It’s hard facing the truth; that I might actually need to be in a place like this.  I daydream about a day when my illness doesn’t govern my life.  Just to imagine being on a medicine that always works and not having to warn people about what to expect; that I can be normal all the time and have healthy relationships.  It’s unbelievably embarrassing to look at someone you respect and tell them that you will soon lose control.  When they find out the person they thought you were, isn’t you at all.  So many of them put you on this pedestal and act like you were too good to be true when you fall short.  So short…

When I was nineteen years old I got drunk and confessed to the guy I was dating that my father was schizophrenic and that I was having hallucinations.  My friend Nathan from work was there too.  He heard me say these things but, unlike the guy I was dating, he didn’t run for the hills.  Nathan is my best friend now; the only friend I have left, the only friend I don’t have to take care of.  When a friend of Nathan and I’s asked him (unprompted by me) if he thought he and I should be lovers he said that he knew if we got involved he wouldn’t be able to focus on anything else.  It’s refreshing to get such honesty, such logic from another human being.  I just wish I could find someone else, a friend, lover, or even support person, that would accept me as crazy.  I wish there was someone else I don’t have to dress it up for.  I wish I didn’t have to guard myself by spouting off information.  I wish, I wish, I wish…

I waited until my early twenties to be diagnosed with more than I had been dreading since I was a child.  At ten years old I found out my father was a paranoid schizophrenic and I did as much research as I could to find out if I would possibly inherit the disorder.  With the amount of research I did even at ten I knew that I could someday be as odd and as crazy as my father.  Not to mention the resentment I felt towards my mother for leaving someone so sick.  When I found out my mom had a mental illness as well I tried hard to forgive her, to no avail.

I try, unsuccessfully, to stay healthy.  As I got over the stage of thinking I didn’t need my meds, I began trying something new:  Doing everything right.  I took my meds at the same time every day, I exercised, I watched my diet, no drugs (which had been my policy all along), no alcohol.  I continued on that path until, time after time, I ended up back in the hospital.  With every hospitalization it became clearer and clearer that what I was doing was having no bearing on whether or not I got sick again.  I gained weight and I had bad side effects from my meds.  I kept making it to the same place:  The hospital.  And even when they decided to put me in placement I stayed normal for awhile and then I would swing one way or the other, until I was normal (or they perceived me to be) just long enough for them to let me go.

It was also becoming clearer and clearer that I was unable to work or go to school.  It was a never ending cycle.  I would start work or school, but as soon as my symptoms made it too hard for me to be able to function I would have to call in or put off the work.  Every time I didn’t go to work or didn’t complete an assignment I would start to feel guilty and I would slide further down.  Again I would hit bottom and the cycle would begin again.  Even after volunteering, trying to make myself useful, I ended up not being able to move from the couch as I slid into a deep depression. 

I have accepted that taking medication will be a daily ritual for the rest of my life.  I’m starting to face the fact that none of them will work for long and will consistently need to be changed.  I still hold out a glimmer of hope that I will find a medication that will work forever.  Other people have this luxury.  It would only be fair for me to have it too.  But fair life is not and my glimmer of hope is slowly fading with each med change.

With each medication I expect side effects.  My favorite is not being able to eat.  I’ve had stomach problems since I was in high school and it seems to creep up on me when I start taking some new-to-me meds.  Usually this is accompanied by feeling the need to spit my food out.  I don’t really want to, I just physically feel like I should.  I tend to find foods that I can manage to stomach and try to eat them when I can.  While some may think it’s a great way to lose weight and shouldn’t take for granted, it’s really miserable.  Just one more thing you lose control of.

My second favorite is weight gain, everyone’s favorite I think.  The antipsychotic/mood stabilizer that seems to work best for me has caused me to gain sixty pounds.  I used to be a cute little thing (I have the pictures to prove it) and now I’m a short little blob.  And, because of the rapid weight gain, even though I’ve never been pregnant, I do have stretch marks.

Speaking of being pregnant, I never will be.  I don’t think that anyone should base their decision to (or to not) have children on mine.  Having babies is a deeply personal issue.  It seemed less of one to me before I fell in love with a little girl named Sydney.  She is my mother’s soon-to-be ex-husband’s granddaughter.  She is a beautiful little girl, full of energy and so smart.  I met her when she was a year and a half old and spent a lot of time babysitting her and just spending time with her.  A situation caused me not to be able to see her hardly at all and my heart was broken.  It shattered when in an email her father said that he would never allow me to watch her overnight or for an extended period of time.  He gave the reason that when I would take my medications she was not safe with me.

Before I spent time teaching her new things and giggling with her I didn’t really think about having children.  I was hurt by his accusations, but it got me thinking about whether or not I would be a fit parent if I were to have a child of my own.  After pushing aside the hurt and looking at the whole picture I knew what I had to do.  In December of 2010 I had a tubal ligation, a procedure to make me sterile.  I am still grieving everything I gave up.  Most people who can have children only think about my not being able to have a baby.  I think about not being able to feel my child grow inside me and feeling their heart beat and kicks from inside my belly.  I think about not being able stare at them through the hospital’s nursery window.  I think about not being able to hold their tiny hand and feeling their grip.  I think about not being able to teach them their ABC’s and how to tie their shoes.  I think about not being able to see me in their face and helping them learn right and wrong.  I think about how without children, I will have no grandchildren to spoil.  I think about how adoption agencies don’t give babies to crazy people.

In an effort to soothe myself while I go through a long grieving process, I remind myself of my reason for making that decision; I can’t stop taking medication for nine months while I’m pregnant, I hardly want to impose dealing with me, having my illness, on people who are willing and I especially will not impose me as a burden on my child, I am not willing to pass along a strong predisposition for mental illness, not to mention the selfish reasoning that I cannot watch my child go through what I have, and, lastly, I don’t know if I could make it through making the right decision, if I were to accidently become pregnant, to have an abortion.  Why, you ask, does it have to be permanent?  I answer with two very good reasons; they are not going to cure schizophrenia in the next fifteen years (hell, they not even really sure what causes it), and because when I am manic I make bad decisions, for example, possibly having my birth control removed and becoming pregnant.  While there are slim chances that even with my surgery I could become pregnant, well…they’re slim.

While I’m listing the problems with being crazy, I’ll add one more:  Men.  Men want what we all want, someone who’s attractive with little to no baggage, who can give them a family.  Might as well cross all three of them off for me.  I’m overweight, have enough baggage you need a semi to pull it, and I’m not able to have children by my own decision.  It seems that men who are willing to accept these things are not the men I’m looking for.  I seem to find men who are attractive ok, but if they are (or think they are) willing to accept all the problems with me they definitely have baggage (and more than I can carry).  And if they are ok with me not having kids they usually already have some.  That is something I simply can’t deal with.

The feelings I have about being schizoaffective are neatly tucked away in these pages.  It’s exhausting, going from one extreme to the other, over and over again.  Trying to figure out what to say to people, how to explain, well, everything.