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.