It never ends

 Hello again,

I always think this blog is going to be completed one day but it just seems like there's always more to say.  It's been many years since I last posted, but I won't go into details about everything that's happened in that time frame.  I will say that there have been ups and downs. I was hospitalized in 2024 at Sharp Grossmont and after I got released from there I swore it was the last time I would ever go to a hospital voluntarily.  I wanted to put everything behind me.  Forget about my diagnosis, move on with my life.  But that didn't happen.  

I got a great job working with birds at Avian Behavior Conservancy in Escondido in August of 2025.  I was the education and programs coordinator.  I finally felt like I was getting my life together, a good grown-up job with benefits and good pay.  I loved it.  Who doesn't want to free fly an Andean Condor through the hills and valleys near the ranch?!  Or free fly owls!  And parrots!  It was really a dream job.  But it didn't last.  After about 6 months I was let go.  The side effects from the medication cocktail I was on made me incredibly drowsy and I couldn't perform basic tasks at work.  Even driving to work was dangerous.  I would be on the freeway and close my eyes and count to 5 and then open my eyes again, hoping that I didn't drift into another lane or have something else bad happen.  I figured nothing bad could happen in 5 seconds, so that's how I got to work - driving in 5 seconds increments.  I tried listening to loud music, opening all the windows, drinking lots of caffeine, and yet I still couldn't keep my eyes open on the road.  Work was no different.  I would fall asleep at my desk, I couldn't concentrate, I couldn't remember how to do simple things.  It just wasn't working out.  I was let go in March of 2026.  Along with the job, I lost my insurance, and hence forth my doctors and access to medication.  

Withdrawals from the meds were terrible.  Everyone knows you shouldn't quit psych meds cold turkey, but I didn't have choice, I ran out of meds and had no way to get more.  I couldn't eat, couldn't sleep, had the urge to constantly move and couldn't relax.  But after that wore of (maybe a month later) I started to feel AMAZING!! 

I had energy, I had life, I had that spark that you don't realize you have until it's missing.  I was convinced all my doctors over all those years were wrong.  I knew better than all of them.  I was definitely misdiagnosed.  How could someone feel so great off meds who was still actually ill?? I also had emotions again for the first time in years.  My wife said to me "you're different now" and I asked in what way, and she said "you have emotions now".  And she was right.  I cried at tv commercials, I got frustrated over things, I was happy and excited.  I didn't know how to deal with those emotions because it had been so long since I had felt them.  

I got a new job at the Sheraton Marina and Resort in April.  It has been an amazing blessing.  I have excellent benefits that kicked in after my probationary period at the end of July.  I was still feeling good.  Still had energy.  Still had that spark I thought was lost for good.  I set up appointments with a new psychiatrist and therapist, just to establish care.  I felt great when I went to these first appointments, but it was very soon after that I started to experience some symptoms: the feeling that the FBI was after me, that my thoughts were being broadcast to people, that license plates were secret coded messages to me.  Then the voices started back up. Frederick.  You might remember him from my first post in this blog.  Well, let me tell you, he found me somehow and was not a happy spirit.  He would tell me horrible things like that I was a useless human, that I was stupid and not loved by anyone, and other things like that.  I hated him, but as I've said in other posts, the relationship we share is complicated.  I hate him, but I also love him, need him, get concerned whe he doesn't talk to me for a while.  I equate it to someone being kidnapped, and over time comes to rely on their captor and doesn't run away from them and stays and it's just a huge mind fuck (excuse my language).  But that's how Frederick is for me.  I hate him, but I also don't hate him.  It's weird.  

Anyways, after a few weeks of progressively worsening symptoms, I had a major psychotic break.  I got Denise off to work as usual, went back to bed to try to sleep (I hadn't slept hardly at all since coming off meds in March).  Instead, Frederick had other plans.  He told me that I needed to kill myself and become a spirit with him, because he was the only one that truly loved me and cared for me.  He said to kill myself or he would take over my body and kill me anyways, in some horrific way and that I would suffer.  So I opted to kill myself by ingesting a whole bottle of benedryl.  I'd just got to sleep and not wake up.  Peaceful.  No pain.  But I didn't want to die.  I was panicking and in the midst of my panic, Denise showed up back at home.  Apparently I had written an email to my old therapist and she called Denise and told her to call 911 immediately and to get home as soon as possible.   So Denise saved me from following through with the benedryl plan.  

Police were called, I was taken in handcuffs to a crisis stabilization unit nearby and was drugged up when I got there.  I didn't know where I was, Denise didn't know where I was, it was all very scary and overwhelming.  I was transferred to a psychiatric hospital late the next day.  I was starting to gain some insight back by this time, though I was far from being well.  

The hospital was like a mix of summer camp and prison.  It was strict, no phones, computers, and to top it all off I was on a 5150 hold (an involuntary hold that means you can't leave for 72 hours even if you wanted to) so I couldn't go down to the cafeteria for my meals with everyone else.  Everything was locked up, including my toothbrush, hairbrush, and deodorant.  I'm not sure why those items had to be locked up, like maybe I might try to put some Ocean Fresh deodorant on someone in the middle of the night??  Who knows.  I do know Denise visited me every single night from 6:00-7:30.  She even snuck me in a cookie!  I did a lot of coloring and reading.  They adjusted my meds, put me back on clozapine and haldol, which I wasn't thrilled about because that combo had made me so drowsy before.  I couldn't risk losing my new job because of being drowsy.  But what choice did I have?  It was that, or deal with life threatening voices.  

So here we are, out of the hospital and back to work.  I've been really drowsy, but am taking meds at night before bedtime to help lessen he drowsiness during the day.  So far so good.  I'm currently enrolled in an IOP (intensive outpatient program) that I'm doing for the next 3 weeks.  It's been helpful so far.  And I have a new therapist that I'm working with weekly as well.  Hopefully, between the meds and the therapy, it'll be enough to keep me out of the hospital for a while.  

So that's the long update.  Maybe I should write more often so these posts don't get so lengthy.  

Happy Friday everyone.

Until next time.

Emotions

Well hello again and welcome back to my blog.  Every time I think I'm finished and have said all I could possibly say, something comes up and I need to write another post.  Just one more... again.  This time, I wanted to talk about some of the emotions that might be with us at times relating to mental illness: before diagnosis, after diagnosis, and after recovery.  Since I last posted, I have had ups and downs.  Changes to medication, and changes in my life.  I am always reminded that mental illness is a growing and constantly changing beast.  What once was true (maybe a medication that worked in the past no longer works in the present) or that your symptoms have subsided or flared up, change seems to be the only constant. 

Now, back to the difficult subject of emotions.  Let's start with the BEFORE.  For me, before I was diagnosed and spoke publicly about schizophrenia, I felt the need to hide this part of me.  There was a lot of shame and uncertainty.  If people knew, would they treat me the same way?  Would I lose my job?  Would I be labeled as a "weirdo" because I talk to spirits?  Better just keep it on the D.L.

After things got to a point that they could no longer be ignored, I decided to get help once and for all.  If you have read the previous posts, you'll know that I had tried to reach out to get help a few times in my life, but never followed through.  The shame and uncertainty won.  After seeking therapy, I learned a lot about my condition and about myself.  One thing was certain, was that I was awful at identifying emotions and acknowledging them in myself.  I was ok with positive emotions like "happy", but recognizing anything negative was trickier.  I couldn't recall a time that I had ever felt "mad" or "sad" because I was always happy or just "ok" or my favourite "fine".  I'm fine.  You're fine.  Everything is fine. 

Through therapy, I learned a new powerful emotion that I didn't realize I felt, but that I felt a lot: GUILT.  I remember telling my parents that I had started to see a psychiatrist and therapist and was taking medication.  And not only that, but that I had been diagnosed with Schizoaffective Disorder.  It is like a combination of bi-polar and schizophrenia (best of both worlds, eh?).  My parents were unbelievably supportive, but I still felt like I had done something wrong.  That I had worried them, that I had upset them, I was weak and needed them in a way I had not needed them since childhood.  It was an inconvenience.  I was an inconvenience.  Of course that wasn't true, but I still felt guilt. 

Now, 5 years later, through good times and bad... I still feel that guilt.  But I also feel a lot of other things that can now be identified other than just "fine".  I have felt happiness, I have felt sadness, I have felt anger and frustration.  I have felt love.  SO much love that I feel my broken self isn't deserving of it.  But then I am reminded that I am not broken.  Mental illness may be a part of me, but it doesn't make me broken.  I am proud of who I am, and although I still hear "voices", have hallucinations, and suffer from anxiety, the good days make the bad ones a little less dark. 

Goodbye...

How do you say goodbye to something that has been a part of you for more than two thirds of your life?  Something that is so engraved into your personal story that you almost don’t know who you are without it.  I am talking about the Spirits of course.  If you read the first blog post of this series, I talked about how they came to be, over 22 years ago.  Like a shadow, they followed me throughout my teen years into my twenties and then my thirties.  Though not always present, they were lurking in the depths of my consciousness, ready to show themselves without warning and often interrupting my ability to function.  Not only that, but they were dangerous, always trying to lure me into harmful situations.  Despite the disruption to my life, part of me was comforted by their presence.  They were part of me.  They grew and evolved with me over the years.  They were a constant in the ever changing landscape of my life: moves to different states, new jobs, relationships, friendships, hard times and good times.  They were there with me.  And now they aren’t. 

Part of me feels abandoned by them and part of me feels so free from their grasp that I never want this feeling to end.  For the first time since being diagnosed over four years ago, I can say with complete honesty that I feel great.  It’s a feeling that I thought was lost forever.  I have the medication and therapy to thank for giving me my life back.  Despite having to get a blood test every week, the hassle is a small price to pay for feeling this good. 

Let me back up to the beginning of the paragraph above where I said part of me feels abandoned by the spirits.  You might wonder how someone could be protective of these Spirits which were mostly hostile, but experiencing them was something very personal.  Something only I experienced and no one else could ever really know what it is like.  They were a part of me just like how having blue eyes and blond hair is a part of my identity.  The first step in saying goodbye was to start recognizing them as hallucinations and not as actual spirits.  Despite the strong evidence that medication makes them go away, a part of me will always wonder if they were actually real.  It is a hard habit to break, calling what I experience 'hallucinations'.  They have been “the Spirits” for most of my life.  Changing my thinking was and still is a work in progress.

This post is supposed to be a goodbye letter to the Spirits, but I felt it was necessary to describe why this is so difficult to write.  Why it is so hard to say goodbye.  Hopefully you will understand why just saying “good riddance to these horrors!” is not something I have been able to do easily.  I read a fantastic blog by Sara Courter called “Puzzle Pieces: Letting Relationships End” that really hit home to me.  The blog is geared towards relationships and friendships, but it can be applied to my hallucinations as well.  Saying goodbye isn’t an easy thing to do and this blog explains it beautifully.  She says “what is it about ‘forever’ that makes us cling, cling like fuzz to fabric and children to parents’ legs?”  I need to accept that the Spirits don’t have to be forever and that I can live a much happier and more productive life without them.  However, I still am saying goodbye to a piece of myself.  A piece of my identity.  Something that made me unique.  And it isn’t easy to do.  But I’ll try. 

So with that, goodbye Frederick, goodbye Ivan, goodbye Allister. 

My Spirits. 

You are not my identity.      

Wing Update #2

I am still in the hospital.  It has been 5 weeks.  If all goes well I will be discharged on Friday afternoon, pending my doctors evaluation.  I feel good though.  The Abilify made a huge difference in my mood and actually feel more like myself than I have in a long time.  So hooray!  maybe I'll get back into writing my art blog.  I have a new picture to draw based on a friends suggestion.  The only clue you get is: TACO.  What will this picture become?  What characters will appear in it?
Wait and see!

The hard thing about being in the hospital this long is that people come and go daily.  You meet cool people and make friends, then they are gone in the blink of an eye.  I am happy they got better, but it is hard not to feel a bit of a loss when they leave and a bit selfish that they aren't there with you anymore.  About 3 weeks ago, for a week, we had the most amazing group of people.  I remember one moment in particular where we were sitting out on the patio and "Sam" was playing guitar and singing.  "Ralph" was drumming on an upside down garbage pail.  The little fountain behind us was making water splashing noises, and it as just the most peaceful moment I can remember in a long time.  Everyone got along. We were all friends.  And not just "hospital friends" but real friends I want to keep in touch with outside of this setting.  Out in the real world.  We are planning a get together party but they are just waiting on me to get out.  If Friday happens, then maybe we will have our get together the next weekend.  Anyways, these amazing people I've met made being in here for so long tolerable and it is always bittersweet when they leave.   

Time for a vitals break.  Like I mentioned in one of my other posts, they love to do vitals all day long.  Because of the new medication I'm on, they do mine even more often.  I have good blood pressure always, but my resting heart rate is very high.  Guess it is just my normal. 

Ok, back to the post:  I have been reading Harry Potter again.  There isn't really much to do around here so reading books has been my answer to boredom.  I have read about 7 books in the past 4 weeks.  That's a new record for me I think.  We are watching Pitch Perfect 3 tonight as our movie.  Probably will start it up in half an hour.  I'm listening to the best of Andrew Lloyd Webber while I type this.  Music keeps me distracted from voices. 

I have high hopes for this new medication (Clozapine). It is sort of a last resort medication when treatment with other medications hasn't worked.  I started on it last Monday and have noticed a slight decrease in the voices, but it is still too early to tell how it will work.  It has worked wonders for many people, so I am hoping it will for me too.  The downside is that you need to get weekly blood tests to watch your white blood cell counts.  The medication can lower them and leave you without any defense against infections which can be deadly.  So they just monitor it closely.

Anyways, I'll update you from beyond the hospital bubble when I get out. I don't even know what the date is, and i only know it is tuesday because we had tacos for lunch today = taco tuesday!

Thanks for reading!   

Happenings from "The Wing"

I wrote a post in February about hope.  Sounds nice, right?  Well it wasn't.  It was about lack of hope.  It was such a downer of a post that I didn't even post it.  I want to brighten the mood from that post with one today from within the ward.  I was admitted 3 weeks ago for having command hallucinations telling me to injure myself and have been at Mesa Vista ever since trying to find a combination of medications that will curb the voices.  My mood has been excellent since starting on a medication called Abilify.  I feel good, except for the voices are still there so we have to keep trying other things.

I will probably be here another two weeks.  This will have been my longest stay, and I have been particularly resilient to the medications so we have one last one to try, a "last resort" medication called Clozapine but it requires blood tests weekly because it lowers your white blood cell count.  Not an option I'm thrilled about, but if it quiets my mind I guess it is worth it.

Tonight, it is about 7:45pm.  It is Movie Night so we will be watching the Shape of Water.  Snacks will be coming out soon too.  I love snack time.  Puddings, fruit cups, chocolate mik, cheeses, crackers and cookies, and yogurt.  I talked to the nutritionist so I get a special snack - blueberry greek yogurt and fresh blueberries and raspberries. Yummers.  Today we had some groups (art therapy, psychology group) and maybe others but I don't remember.  All these groups make me feel like I'm in school again.  Some are helpful and some not so much.

A lot of my friends that I made here have discharged, so it is a bit lonely here on "the wing" these days.  We call it that because the name of our ward is East Wing 1.  Oooooooh, the snack cart just passed by and i grabbed my treats.  One of the new medications they put me on makes me constantly hungry.  It isn't doing much for the hallucinations though, so we probably won't stick with it.
Oh, movie starting, gotta run.

Now it is tomorrow (Friday). 
Consensus on Shape of Water - weird.  I can't say I hated it, but I wouldn't watch it again.  Since there is not much to report, I'll make a list.  I love a good list. 

Here is what I have done today so far:

• woke up around 6:00am for vitals (why do they take them so early??)
• Got up, stumbled to the main room where some other people were up.  
• "What's the happs guys"?  Sat down and joined in watching TV
• Got a coffee (yes, COFFEE.  Those who know me know I don't drink coffee.  Who am I these days?  Desperate times call for desperate measures, and caffeine was a must because I was up until 3am.)
• Put TONS of creamer in coffee to make it bearable 
• Watched Dogs 101 (great show)
• Had some breakfast: biscuits and gravy and some eggs
• Took a nice long nap
• Patrolled the halls for shadow monsters (a new hallucination of mine)
• Skipped lunch because I was still to full from breakfast
• And here we are.  I'm listening to some tunes as I write this.

Later, I might go to a group or two.  Maybe have a snack.  Maybe read my book.  I have no solid plans.  Such is the way in the Wing.  

Anyways, that's all for now.  My spirits are high (my spirit, not THE spirits) and hopefully I'll be out of here soon.  

  

What's a Mental Hospital Like??

I’m sure it’s a question that you might have wondered after reading my blog which mentions numerous stays in the psychiatric hospital.  So, because it is actually very interesting, I thought I’d describe what happens when you get admitted.  First, to get admitted isn’t easy – I read a quote saying it’s easier to get into Harvard than into a psych ward.  To start the process, you have to go to the ER at a hospital.  I always go to the one closest to Mesa Vista (one of the psychiatric hospitals in San Diego that my insurance accepts, and the nicest, so I’ve heard).  At the ER, they ask you the usual “why are you here” type questions which in my case has always been that I am an immediate danger to myself because of my symptoms.  Read the other posts for details on that.  They take you to a room, ask more questions, take blood, then set you up in an actual room with a bed and a little tv and a curtain for privacy (which I never close because I want to see the happenings), and they make you wear a hospital gown.  It’s very interesting to be in the mix of the ER bustle.  Last time I was there, my neighbor was moaning very loudly and persistently because she was having trouble pooping (or that’s what we gathered at least).  Every time someone passes by it’s a game of “what are they here for??” 

After a while, hopefully not too long, but sometimes hours, a member of the behavioral health team comes in to assess you.  They ask a LOT of detailed questions to determine if hospitalization is necessary.  “I don’t usually admit people that want to be admitted” revealed Ben (the PET team member who was assessing me) after I exclaimed that I didn’t want to be admitted.  So, after a lengthy interview I was admitted.  Then you have to wait for them to take you there, because in this case Mesa Vista is a separate building from the main hospital.  They take you by ambulance, which is ridiculous because it’s literally around the corner.  You could walk in a few minutes.  But hey, that’s protocol. 

When you get there, be prepared to answer a barrage of questions and have tests done (more blood, urine, etc).  There’s a lot of paperwork to sign, and then they need to go through all your belongings to make sure everything you have is safe and allowed (there are a LOT of rules that keep changing every time I am admitted).  This time, I was transferred around 2am, so was very tired when being put through the admissions process and just wanted to snuggle up in my penguin blanket with my stuffed bears that I had brought.  But nope, no stuffies allowed.  No blanket allowed.  I had a meltdown by the nurse’s station.  It was too late for this and I just wanted a simple comfort from home.  “People bring in contraband inside stuffed animals” I was told.  I had to pull myself together and remind myself that I am a grown 34 year old woman and can survive a few days without her blanket and stuffies.  Needless to say, I don’t think I slept at all that night.  It’s loud, it’s bright (there are windows on the bedroom doors) and people are constantly coming into the room to do checks.  Every 15 minutes.  24 hours a day.  They have a clipboard and write a little number corresponding to your location. 

The weirdest things to get used to are the total lack of privacy (even the bathroom doors don’t go all the way to the ceiling), not having access to your cell phone or electronic devices, and the rules about what is allowed in your room, what you can have access to in storage, and what is not allowed at all.  Anything metal, sharp, or otherwise deemed “dangerous” is not allowed (belts, shoelaces, or any type or string on clothing is a big no no).  For some reason, makeup is allowed in storage, but not in your room.  I finally talked one of the nurses into letting me keep my stick of mascara in my room, but that was after a few days and had been initially told no.  Tweezers?  Forget about it.  Jenga?  Storage only.  You can shave your legs only under staff supervision.  Needless to say, there’s a lot of hairy legs on the unit haha.  In the rooms, there are almost no flat surfaces or things that people could tie things to.  I don’t really know what trouble people can get into with flat surfaces, but I guess people get creative when they are trying to hurt themselves or others.  The shower head is this little nub that comes out of the wall and sprays a pathetic stream of water at you, and you need to splash yourself and squeeze up against the wall to adequately wash yourself.  The beds are lined with plastic because they need to keep them sanitary, so they are squeaky and not that comfortable.  The pillows are the same – those flat plastic lined things that don’t offer much support or comfort.  The blankets are thin and scratchy (and so are the towels).  But that’s just a minor inconvenience. 

Meals are excellent – they feed you well and often.  I swear, I always come out of there 5 pounds heavier.  The last few times I had been in, the highlight of my day was filling out the meal card.  You got to pick what you wanted for breakfast/lunch/dinner the next day from a little menu card.  This time, our meals were served in more of a buffet style system.  I liked that better because I could control my portions better without wasting food. 

The wards themselves (I have stayed in two different ones, each with its own benefits) have community space for hanging out, watching tv and using computers, a room for dining and having groups (psychology or recreation therapy or crafts), a nurses station, bedrooms, a medication room, interview rooms for when you meet with the nurses/doctors, and an outdoor space.  The doors to the ward are kept locked and only accessible with a special fob that the staff all have.  No escaping for us.  Not to mention they’d notice pretty quickly with all the checks they constantly do.  It’s funny, you stop noticing the nurses with the clipboards hovering in the background fairly quickly.   

You meet with your psychiatrist daily to go over your treatment plan, update on medication, and talk about how the symptoms are changing if at all.  It’s usually a pretty quick visit.  This time, because of my non-compliance with medication, it was decided that a slow-release injection of Haldol was a better option for me.  Not only would it ensure that I would get my medication consistently, but it is better for me mentally to not have to be a slave to pills every night.  I agreed to this course of treatment. 

Oh another thing they LOVE to do all day is take your vitals.  Each morning between 6:15am – 6:30am they wake you up, take your blood pressure and temperature, then let you go back to sleep.  They do vitals like TWICE more throughout the day.  First sitting, then standing.  Because I guess there’s a difference.  I’m super good at vitals and always have perfect blood pressure.  I did learn that my heart rate runs naturally high though.  A debate started when my brother visited and he had a fitbit that showed his heart rate under 60bpm.  Mine ran over 110 usually (resting rate).  We had to call a nurse over to settle the score of “who has the normal heart rate”.  Apparently normal is between 60-100bpm, so neither of us won that one.

You can pretty much do what you want all day, except they turn off the tvs when it's group time to encourage you to go.  The remote for the tv is also literally the size of an ipad.  It’s the weirdest thing.  When I saw it for the first time, I was alone and wished someone was around so I could have looked at them and laughed and said “amiright??” You can nap, eat, not eat, hang out with other patients, read, color, go to groups, not go to groups, whatever you want.  There are also snacks in the fridge so if you want pudding or cheese you can have that whenever you want.  Not bad, right?  Then you remember you are locked in. 

The other patients are a whole other story – some are cool, some are weird, some are just plain annoying.  I met a guy once who claimed to be a musical savant and told stories of his life.  He had a gross leg wound and the bandage kept coming off.  Eeew.  Some patients have bipolar, depression, alcoholism, or who knows why they are there.  Some are court ordered.  Some are on involuntarily holds (meaning by law they cannot check themselves out) and others are voluntarily.  I have been mostly there voluntarily, although one time I was on a 51-50 hold.  That’s what they call it and it lasts 72 hours.  Then you are considered voluntary after that if they think you don’t need to be legally held any longer.  If they want to extend it, they have to have a hearing with a judge and stuff.  I’ve never had to do that.

Then, after your symptoms have stabilized and you feel safe to do so, they usually release you.  I’ve been held longer than I wanted to stay many times because I was still experiencing symptoms even thought I didn’t feel like a danger to myself anymore.  So, eventually, if you want to get out, you tell them what they want to hear:  “nope, no more voices!”  And then you are set FREE!!  And you have to do a whole bunch MORE paperwork and discharge stuff.  That’s boring though so I’ll skip that. 

The best feeling in the whole world is driving out of that parking lot back into the world.  Never am I more happy to stop at red lights or get stuck in traffic.  It’s like getting drunk on freedom.  First stop?  Starbucks. 

Hopefully this helps eliminate some of the mystery of the mental ward.  It’s not such a scary place, and certainly necessary for me from time to time.  I always am super reluctant to go in, but leave knowing it was the right decision.  This is also only my experience at one hospital.  I’m sure there are awful places out there, but I’ve always been lucky with Mesa Vista.  If you have any questions about any of this, feel free to ask!

It Continues...

The other day in therapy, we were asked to think of some things that we used to enjoy doing, but don’t do any more.  I thought about it, and landed on “writing”.  I have always enjoyed writing stories (see my blog for some good ones), and also prefer to communicate important things via written word because I have time to think, organize, and present my feelings in a structured way where I feel more in control.  Face to face conversations, especially about difficult or conflicting things, can be full of uncertainty, and if not prepared, I feel like I never get my point across properly or in the way I mean it to.  For example, I’m not going home for Christmas this year (for a number of reason) but the main one is that many of my friends have new babies that I want to meet and spend time with.  Christmas is not the best time for that, so I’m going to go to Vancouver in March or April when timing is better for everyone.  I tried explaining this to my mom and proceeded to hurt her feelings and give the idea that “I don’t value Christmas traditions” or that “I don’t value my family” and a whole bunch of other negative stuff gets perceived.  I should have just written a well thought out email, and all that could have been avoided.  Anyways, I digress…. I wanted to write this as an extension to my other blog that I posted about a year ago about my experiences with mental illness, because as I said in the last post – it is a story that is never over.

I wanted to write this now because I feel like I need to before the medication kicks back in and takes away my creativity again, including my ability and will to write.   Yes, I was off medication for a few months (bad me), but now I am on a slow release injection so not taking medication isn’t even an option any more.  It’s in me for good, and let’s just say that if I don’t show up for an injection appointment, it will be noticed.   One reason I stopped taking medication was the awful side effects that come along with it, one being for me, a feeling of complete dullness and zombie-like existence.  My spark was gone; all the things that I feel make me who I am are taken away, and what is left is a shell – a person who looks and acts like Lindsay, and even can joke around and have fun and enjoy things – but the essence is gone.  It’s like living in your own shadow, and that was just not for me.  So I stopped.  Cold turkey.  Just like you aren’t supposed to.  This was in June.  I was going on a trip to Vancouver with a friend in a few weeks and I couldn’t stand being tired all the time and feeling dull and cloudy, and I wanted to enjoy this trip.  There was some withdrawal I felt after a few days off medication.  Upset stomach, headache, just generally a sick feeling.  I threw up a few times.  But I knew it would pass (I had tried going off medication one time before for a few weeks and these were the same symptoms that had happened that time, but I felt so awful that I caved and started taking the medication again just to feel better).  After about 2-3 weeks, I felt fully normal again.  Better than I had in a long time actually.  I went on my trip, could stay up to 11pm like a real adult, had energy, and was genuinely feeling like myself again.  I was symptom free too!   This was great.  But it didn’t last.  Of course.  I started having some symptoms come back after about two or three months.  Nothing serious, mostly just intense anxiety at first.  My poor fingernails suffered with that though.  Then the voice of the little kid spirit showed up.  He never says much, but he cries and laughs a lot, and follows me everywhere.  Then came back Ivan, and if you read my older posts, you’ll know who I’m talking about.  He was pleasant enough at first, but then started up with his usual “I want you to die and be a spirit with me” thing, and he would try to get me to hurt myself, which escalated into him trying to get me to kill myself, etc etc.  There was also paranoia that police were after me, and every time I got home from work I was sure they would be there waiting for me.  It didn’t help that the police sometimes park inside the gate at work and so I thought they were after me there too.  I also started feeling like people could read my mind.  Same old same old.  It wasn’t long before people started getting concerned, and I admit it, even I was starting to feel my control slipping away.  I had another near suicide attempt in one of the bad moments – I won’t get into it, but Tiki saved me from a very bad decision.  It was a few days later that I was back in the hospital for the fifth time.

 

I don’t want this post to be incredibly long, even though it already is getting that way, so I’m going to skip over the details about the hospital and all that (I did meet some characters in there, as usual, and we watched the world series as a whole ward so there was an extra sense of camaraderie with all the patients this time.  FYI – I was a one of the minority of people hoping for Houston, and we did it!!).  I can do a whole other post about what it’s like in a psychiatric hospital, the “mental ward” if you will.  It’s interesting, but not for right now.   

What is for right now is the point of why I wanted to write this even though, right now, that is the exact opposite of what I actually feel like doing.  I want to run and hide in Mission Trails behind my house and not talk to anyone ever again, especially if they ask “how do you feel today?”  I don’t want to answer any more questions, I don’t want to tell any more nurses, social workers, psychiatrists, etc about my symptoms, I just want it all to go away.  I went back to read my old posts in this blog, to see what I wrote about because I honestly couldn’t remember, and what I discovered was someone in a good place with their diagnosis and situation.  Someone who had reluctantly accepted their fate and that this was something that needed to be managed on a daily basis through medication and therapy, but things were looking up and it wasn’t so bad. 

Something happened in this last year because it is not where I am today.  Somewhere along the line, I started to feel extreme anger at the situation.  A hatred for mental illness and for myself.  All these recovery stories just made me mad and bitter, and I hated the girl who so openly wrote about her experiences with the spirits and medications and hospitals.  I wanted to un-post that blog and pretend that no one had read it or knew that about me.  I just wanted to be me, without all that attached.  Me, before anyone knew what I dealt with or became involved.  Me before medication.  Me before therapy.  Me as I was growing up, though sometimes a struggle to do it alone, I want to go back to that.  But I know that’s not possible, and that my condition has continually gotten worse as I have gotten older.  And that there is no more hiding it now.  But I still hate it.  And I feel like there is no way out.   Medication which makes you feel dead, or symptoms which have the capability of making that happen for real.  Either way, there is no good option.  No way out of this.  If only I could have the ability to control my own brain which so horrifically betrayed me, or to will all of this away, but I don’t.  And I don’t know how to deal with it.      

THE END: for now

THE END: for now.  But there is really no end to this story

The biggest things I have had to struggle with (aside from spirits, depression, hospitals, etc) is the fact that 1. The medication causes massive weight gain and I put on about 30 pounds over the year, no matter how healthy I tried to eat. It seems to have leveled off now, but seriously, gaining that much weight has affected my confidence and self image.  And 2. I felt like I lost my creative spark.  I used to write blog posts about art.  I used to draw.  I used to create.  I used to get caught up in my fantasy land of rainbow cows and penguins.  This was all lost since starting on the medications.  These medications limit how much dopamine is in your brain and dopamine is thought to be linked to creativity.  I am trying my best to get it back and slowly, slowly, I think more of me returns every day.  I am happy to say that it has been one year since I have experienced any voices and I am starting to want to draw and create again.  I focus on my successes instead of my set-backs.  You don’t have to let mental illness take over.  You can lead a normal life and have a job and a family and good relationships.  Your diagnosis doesn’t define you.  Stay strong.  You are not alone.    

I am very open to discussing all aspects of my journey so if you have questions please ask them.  I am an open book when it comes to this (finally now after hiding it for so long) and I hope to find others who will open up about their personal struggles with mental illness from anxiety to depression and everything else in between.  I still go to a support group through CARE and there is always the chance that symptoms will return.  I just take it one day at a time.  Thanks to all my friends, family and therapists, who have been so amazing and supportive through all this.  I might not be here if it wasn't for your continued support and love.

Thanks for reading.

MORE HOSPITALS

MORE HOSPITALS

Little by little I started feeling a little better, but almost as soon as that happened, it all came back and the medication didn’t seem to be working.  A spirit had entered my brain and I could feel it inside me, burrowing into my brain.  I became obsessed with the subconscious and I turned against my own brain.  How dare it make assumptions about the world around me (mainly brain teasers and optical illusions made me mad).  The only way to fix this was to cut the bad spirit out.  I sliced open my forehead until blood was dripping down my face.  My friend saw this and immediately drove me to the hospital where I was admitted for a second time. 

This time, I was in the same hospital but in a different ward.  This ward was a little better.  It had a common area with a fridge (always stocked with goodies) games, a tv, and coffee/tea bar.  It also had a great patio.  I met some cool girls this time, and we actually made it a little bit fun.  One of the other patients claimed to be a musical savant, so we would listen to his stories about the old days (he was an older gentleman) and about how he did amazing things in his youth.  The recreational therapists would come most days and we would make beaded bracelets or do some other art project.  I now have a drawer full of beaded bracelets thanks to this!  They are kind of awesome actually.

They messed with my medication a little bit more, adding Haldol to the mix.  Haldol is a powerful antipsychotic but it was added at a low dose to supplement the medication I was already on.  I was taken off lithium because it didn’t seem to be helping at all.  While I was hospitalized, I missed my favourite day of the year – pride parade day! I got a visit from a friend later that afternoon bringing me flowers and some fun gay pride swag.  It was pouring with rain that day so I guess if I had to miss a year, this would not be a bad one.  I was in the hospital this time for about a week.  Long enough.  The voices had quieted and I was feeling ok to go home.  It didn’t last long.

I was hospitalized twice more after that, once on a 5150 hold (involuntarily admission to the hospital) with the longest stay being for about two weeks.  All because the spirits wouldn’t leave me alone and cardboard world invaded my mind.  The last time I was in the hospital was in January of 2016 (a WHOLE year ago!).  I spent my birthday there, but thanks to some amazing friends, I felt so loved and happy and they made it a really special day for me.  One friend brought me an entire cake from Extraordinary Desserts called the Moroccan.  It is my favourite of their cakes and they almost never have it available.  It might go down at the best birthday present I have ever gotten.  We had to cut it with a spatula because they don’t allow knives (even plastic ones) in the ward.  #psychhospitalproblems… During the last stay, they also took me off the other medications I was on and just prescribed a higher dose of Haldol.  Along with Lexopro (an antidepressant) I finally felt more stable and functional than I had in over a year.  I started to feel like myself again.  

IOP - Intensive outpatient therapy

IOP-intensive outpatient therapy

After my hospital stay, I was placed on a different medication to see what that would do.  Again it seemed to help at first, but not totally rid me of Alister and the bad things he would say.  I started a new program at CARE called IOP – intensive out patient.  It is a cognitive behavioral therapy based program with time each day for check-ins, therapy exercises, and other activities to help keep people that are having a hard time coping with their conditions.  It ran on Mon/Wed/Fri for 6 hours.I was out of work at this point, using up all my paid vacation and sick time.  My mum came down to stay with me for a little while and was a huge source of strength for me.  This was all pretty hard on her and my family, especially with them being so far away.  So having my mum there was very good for my recovery.  She also finally caved and bought a cell phone so we could communicate wherever and whenever (she now loves her phone, so you are welcome, mum). 

I not only did IOP, but I started going to a support group every week offered through CARE and it was nice because I had started to feel very alone in my experiences.  I benefited a lot from both IOP and the group because I met other people who had conditions like mine and we could share stories.  It was so nice to not feel alone anymore (which is what I hope this blog will do for some people).
  

I had been at IOP for a few months by this point and was doing ok, but I got some of the worst news ever – my insurance wasn’t going to cover my treatment.  Sharp insurance, which is what I had, does not cover UCSD medical group (which is what all my therapy was through).  I had to stop going to IOP and find a new therapist all rather quickly.  It was a huge deal, because I was still very fragile and changing therapists can be a tough thing.  Reluctantly, I started up at a different IOP offered by Sharp.  It was like going to grade two every day.  I could play Wii bowling, color and make collages, do musical therapy (bang on kids instruments) or do aromatherapy where they put drops of oil on your hands that smell so good.  They would give us a snack of cheese and juice each morning and a hot lunch after the program ended for the day around 12:30.  I really felt like I didn’t belong there but it was better than no therapy. The good news is my new one-on-one therapist was amazing and I liked her a lot. I had about a month of that before I had to start coming back to work.  I eased in to it, coming back for just the afternoons after the IOP program ended for the day.  

HOSPITALS: Things got bad

HOSPITALS: Things got bad

One night, I had had enough.  My legs were destroyed from all the cutting (which was hard to hide from my husband – he knew about my struggles, but I still didn’t want him to see the cuts).  Tim was at work and I couldn’t take it anymore.  I found a bottle of old painkillers that had been prescribed for Tim back in Colorado when he had hurt his back.  I was going to eat the entire bottle and then top it off with some alcohol in hopes that I would just drift into an eternal sleep.  I was thinking of nothing or anyone in those moments.  Just relief from bad spirits.  The only thing that saved me from carrying out the plan was my therapist who I had texted right before I started taking pills.  I got in about 6 of them before she called me back.  She told me to throw them away but I couldn’t do it.  She called 911 and an ambulance and police car showed up quickly.  They took the pills away.  They were some of the nicest people I had ever met and were gentle and understanding.  They talked to my therapist on the phone and asked what my diagnosis is – “Schizoaffective Disorder” she told them.  This was the first time that I had heard my diagnosis.  The CARE program is very careful about putting labels on people so since I had never asked, I was never told.  Also, my case was unusual, so I think they had a hard time coming up with a diagnosis. I certainly didn’t fit the stereotypical mold of schizophrenia. 

Anyways, that night I was taken by ambulance to the UCSD hospital emergency room in Hillcrest.  The medication I had ingested was expired so I was hooked up to blood pressure monitors, heart monitors, and other pieces of equipment.  I stayed for a few hours until all my tests came back ok. They talked about hospitalizing me that night, but there were no beds available so with an increased dosage of my medication, I was sent home.  I lasted maybe three more days until I was so depressed and in danger of hurting myself, when my therapist asked if I felt like I needed to go to the hospital, I said yes despite being terrified at what that might mean. 

So for the first time that year, I believe it was February of 2015, I was admitted into a locked ward in a psychiatric hospital.  It wasn’t a very pleasant experience – there was nothing to do.  I colored mandalas, watched tv, played games with some of the other patients, took lots of naps.  They fed us a lot and often.  Dinner was at 4:30 though, something I never got used to.  They check your vital signs CONSTANTLY (like even at at 6:30am while you are still trying to sleep).  The worst part is that they don’t let you have your cell phone.  I felt pretty lost without that.  My roommate was a grumpy old lady who would yell at the nurses about how corrupt the medical system was.  She was always friendly towards me at least.  After 5 days, and at my begging, they discharged me.  I felt great on the ride home.  I was loving seeing the trees, the traffic, the people! 5 days of isolation had me feeling like the most grateful person in the world to be alive now that I was free.

THE BEGINNING OF THERAPY AND MEDICATION: It is real now.

THE BEGINNING OF THERAPY AND MEDICATION: It is real now.  No going back.

At the assessment appointment, they asked a lot of questions: do you hear voices? Have you ever believed yourself to have special powers?  Do you feel like your thoughts are being broadcast to the world?  And many many other standard questions.  It lasted about an hour, which is all my nerves could take.  They suggested a mix of therapy and medication.  I reluctantly agreed to both. My first attempts at therapy were not very good.  I didn’t know how to talk about my problems and sat there awkwardly wishing I was anywhere else.  I started emailing my therapist because it was easier for me to communicate through writing.  I had time to think about what I wanted to say, and when my therapy sessions came around, I had something to discuss.  The psychiatrist started me on low doses of medication for anxiety as well as Risperdal, a common antipsychotic drug that would hopefully help with the spirits.  It seemed to lessen the intensity of the voices, but ultimately didn’t stop them.  My case was unusual in that I had remained so functional despite having voices pretty much constantly throughout my life.  I had graduated high school, completed 5 years of University to get my Bachelors of Science, and had held a normal social life, including a boyfriend.  Speaking of the boyfriend, one thing he said really stuck with me.  I told him about the spirits when I was about 19 (one of two people I actually did tell) and he said “it is scary how you talk about them like they are real”.  To me, they were very real and it was one of the first times I had even considered them to be not real.  You sort of assume everyone has experiences like this.  It wasn’t something I ever told my parents about either so when I did finally bring it up with them, they were very shocked and surprised (but very supportive).  I didn’t want to tell them, but because I had started on medication, I thought it would be good to tell a few of the closest people to me.  More about that later though. 

The spirits were still harassing me.  I had about 3 that mainly hung around:  Ivan, who I already mentioned, was the dominant one.  Little Fish was a little boy, maybe around 4 years old, who didn’t talk much but got scared easily and would tag along wherever I went, and Betha.  Betha was a strong force of good.  She would give me confidence and say “you got this!”  and other motivational sentiments.  She wasn’t around all the time like Ivan, but I didn’t mind her when she was there, even though her voice was distracting.  Ivan still was constantly trying to make me die so I would be a spirit like him.  He convinced me one time that I could strangle myself with a belt, and I tried very hard to make that happen, but it didn’t work.  He was lonely.  The spirits that talked to me were unaware of each other, so I guess spirits live a solitary eternal life. 

At one point, a new spirit showed up.  The medication had not been working so well and I found myself feeling very hopeless, confused, and afraid.  I wasn’t finding enjoyment in life, I was struggling to remain as upbeat as possible, but the truth was that I had entered a deep depression.  This new spirit was bad energy.  He would say over again “I want you to bleed.  I want you to die”.  His name was Alister.  He never really said much more than that.  I was in a very weak state of mind when he showed up.  So weak that the spirits were wearing me down and I started to have serious thoughts of self-harm and suicide.  I was desperate for relief from the voices telling me to die.  I had started taking Lithium as well as the antipsychotic and antianxiety in the hopes that it might help (but it is more geared towards Bipolar and mood stabilization).  At this point, we were trying anything.  

ASKING FOR HELP: Do I really want to talk about this with other people?

ASKING FOR HELP: Do I really want to talk about this with other people?

After Frederick there were others (there is a story here as to how Frederick ended up leaving my mind, but that’s for later if anyone is interested).  Ivan became the dominant spirit a few years ago right after Tim and I moved to San Diego.  Ivan was not as mean as Frederick but he could still say nasty things to me.  He wanted me to die so that I could be a spirit like him.  He once almost convinced me to climb on to the roof of a building and dance around during a lightning storm.  I again tried to reach out for help, even though the thought of that made me very unsettled.  Once I say something, there is no going back.  No un-saying it.  I had done some research online for where I could go for help and came across a program called C.A.R.E. (Cognitive Assessment and Risk Evaluation) which is a program offered through USCD Health.  They specialize in psychotic disorders and offer therapy, support groups, and research.   It seemed like a good place to start so I emailed them.  I heard back quickly saying to call back the next day and ask for so-and-so.  Now, most people who know me know that I have a stupid irrational fear of phones and calling people.  Not only was I already nervous about talking about my experiences, but now I had to CALL them too?  I wasn’t sure I could do it.  But I was desperate and so the next day I called.  Wouldn’t it be my luck that so-and-so had called out that day and wasn’t there!  Saved again.  Now for the second time I tried to get help and something came up that prevented it.  I saw it as a sign from the universe that maybe I shouldn’t talk about this at all.  I was worried that it would open some sort of Pandora’s box.  They offered to take a message for me.  I didn’t leave one.  Later in the week so-and-so reached out to me (I can’t remember if by phone or email) but whatever it was, yet again I had changed my mind about discussing the spirits.   I was also afraid I could lose my job if they found out.  I worked with children and there is a lot of stigma about people with psychotic disorders, and I was afraid people would think I was dangerous or unpredictable or unreliable.  Or maybe there is some policy about it.  I then figured it best keep that knowledge to myself. 

A couple of years went by and in the meantime I struggled to keep my mind away from the voices of the spirits.  I used to think of brick walls, something no spirit could break through.  They could read my thoughts so I had no privacy.  They were always watching.  Other people could also read my thoughts.  It was as if my whole brain was being broadcast out to the world on a loudspeaker.  Brick walls were the only things that would give me relief from the paranoia.  I also had found that I dissociated a lot from the real world. There were times that I hardly remembered doing things because it didn’t feel like I, Lindsay, was in control of things. 

By this time, I was working at the Living Coast Discovery Center.  When I first started there, the Center was having some huge financial difficulties and was almost about to close its doors to the public.  I took a chance and stuck with the Center.  It was stressful, but we managed to raise enough money in one month (our deadline) to keep the doors open.  It was a major relief and victory for us.  What came next?  Time to plan a seasonal exhibit.  We settled on a theme of Splash of Color and was all about the different ways that animals use color to communicate, find a mate, or camouflage.  I worked 12 hours straight for a month with little time to rest setting up the exhibit.  After the grand opening, I started being harassed by the spirits again in a major way.  The seasonal opened in March, and by June I could hardly function.  My mind was constantly being distracted by the voices.  I was experiencing visual hallucinations that everything around me was made of cardboard and it wasn’t real (hence I wasn’t real either) and those thoughts caused a lot of anxiety and I would shake I was so scared of not coming out of a cardboard episode and it would be that way forever.   I was worried people would start to notice at work.  I had to reach out for help once and for all.  So back to my email (calling was too scary).  I emailed CARE again and this time I did not give up.  My email was answered almost immediately and an assessment was scheduled for the following week.  I admitted that I was very nervous but I received kind and comforting words back.  I could do this. 

THE BEGINNING: Frederick

Blank page – I fill it with words.  I delete it.  Blank page – I fill it with words and again delete it.  This has happened about a hundred times now (ok, that is an exaggeration) but it seems to be the way things go when I try to write about this.  I never know how to start, so I think I’ll start at the end by saying that I have overcome a lot and am so thankful for the people in my life who give me strength.  I have had to learn a new normal and have had to fight with the stigma of mental illness.  Two years ago, I was diagnosed with schizophrenia and it almost claimed my life.

THE BEGINNING: Frederick

Now, for an attempt at the beginning.  I wanted to write this to share my experience with people and talk about mental illness.  There is still a lot of stigma surrounding the topic so I want speak up about the issue by sharing my personal experience.  If this story helps even one person, it will be worth it. 

I’ll start with Frederick:  Frederick was a spirit who I met while using a Ouija board when I was about 12.  There were other spirits in there too, but Frederick was the dominant voice (Frederick has a personal story and background, but I don’t want to digress too much so ask later if you are interested).  I used to play with the Ouija board by myself all the time and ever scratched the back of the board up with a knife to “let the spirits out”.  Eventually my obsession with the Ouija board transformed into the spirits talking directly to me in my head. I didn’t need the board anymore; I could hear the spirits, internally, like someone communicating through ESP.  Frederick and I had an odd relationship – bound to each other and not always happy about it.   Everywhere I went, I could hear Frederick talk to me.  In high school, I became obsessed with the fact that people could read my thoughts, which caused me distress in crowded places.  I already knew Frederick could, so who is to say everyone else can’t also.  

Frederick was with me into my early 20s.  I had learned over the years that the spirits hated to be called “ghosts” and that they were invisible by choice.  I would challenge them by saying things like “if you are real, show yourself”.  They could have made themselves visible but they said I would get too scared so they never did that, despite my beckoning. By this time, I had serious anxiety and bit my nails until they bled.  I also started cutting.  Blood to me was a release.  It was a habit that has taken years to break. 

While living in Hawaii, I attempted to tell a doctor about my problems and the spirits.  Frederick had always warned me against telling anyone about him.  He said it would make him mad, and I wasn’t about to take that lightly.  Mad spirits were not something I needed in my life.  But Frederick had a temper and we fought often.  The doctor said they would refer me to someone and to expect a call in a few days.  That call never came and despite going back to feeling helpless, I was secretly glad because I wasn’t sure if I was really ready to talk about this.  The thought of following through gave me such anxiety that I would shake.  The call eventually came about 6 weeks later, but by then I didn’t want to talk about it anymore and I never returned the message that was left on my phone.