Radio In My Head

There are many different ways of experiencing psychosis, but one that is common for me happened again yesterday.  

I was having a normal day.  It was Sunday and when I came home from church, I was standing in the middle of the kitchen, talking to my husband, and I had just put something in the microwave.  Out of the blue, I heard and felt a loud "pop" in my head.  I guess it's kind of like your ears popping when you change elevation, except it wasn't my ears popping.  It was definitely more like inside my brain.  Then I could hear a constant sound in my right ear that was like someone turning the dial on a staticky old school radio from frequency to frequency.  I couldn't isolate distinct words, but there was speaking happening and muffled background music.  I had to pause for a minute, as I held my hand over my ear, closed my eyes, and dropped my head.  I was trying to focus on what my husband was saying, but the radio noise was very present.  For a moment I was wrestling with my thoughts as I tried to decide if what I was hearing was actually what it felt like, or maybe it was actually just the sound of the microwave.  No, it was not the microwave, or the air conditioning, or a car passing by our house.  Yes, I really was experiencing an audio hallucination.

I have tried over the years to describe what something like this feels like for me.  The best analogy I have come up with is that it is like walking into a pressurized indoor swimming pool area.  It's really loud and echoey and you feel a pressure in your head and chest as you breathe in the warm humid air.  Some things are happening right in front of you and are distinguishable, while there are many other things happening all around you but beyond what you are able to focus on, so there are just a lot of sounds that are loud, yet muffled.  All the while, you try to talk to someone close to you and pay attention to pool safety, but there are splashing noises, the lifeguard's whistle, the spring of the diving board, lots of yelling and voices and laughing and so many things to watch and to divert your attention from one thing to the other.  I feel like that a lot.  It can be quite difficult to accomplish tasks or bigger goals or have a conversation with someone.

Please don't take offense if you are trying to talk to me and it seems that I'm not paying attention or listening or I'm really distracted and keep looking away and seem to be somewhere else.  I'm trying to make sense of what I'm sensing.

A Few Thoughts On Suicide

This is a post I didn't really want to write, but a friend inspired me with her bravery to open up on her blog about her experience and I think it is important to be honest if there is ever a hope for better acceptance and understanding of mental illness and for those struggling to find support.  But I must give a trigger warning here, this is a delicate topic, but a real and important one.

 One of the first and big questions with mental illness when being evaluated by any kind of professional is the sensitive subject of suicide.  My experience with this subject is maybe a little different than some other people so I think it is a good idea to share how it has played into my journey through schizoaffective disorder.

When asked by psychiatrists or therapists if I have have ever been suicidal, I always had a difficult time processing and answering that question.  I was never what I thought was suicidal in that I never thought up a plan but I feel an exhaustion sometimes that just leaves me wishing I didn't have to keep going or that I could go to sleep and not wake up.  I also have kind of an out-of-body impulse about certain things.  It is difficult to describe this aspect of my disorder as it really feels as though there is a separate being from myself that is controlling or commanding me when it comes to voices or certain actions.  I have a battle in my mind where I am screaming in desperation and anger, "no, I don't want to do that, please stop, don't make me,"  at this "entity.". But it can be such an overwhelming force.  

The way this has usually manifest for me is In having a certain preoccupation with a couple of impulses.  First, whenever I get out of the shower and use a hairdryer, I have an impulse to turn the water on and stick the hairdryer in it.  Second, whenever I walk past stairs or a ledge I have an impulse to step off the edge and can see myself rolling down and lying at the bottom.  Third, when driving alone I have an impulse come over me to swerve into oncoming traffic or the median or wall.  It is never something I have thought about beforehand but is a split second impulse and is as I said before, as if another entity is controlling me against my will.  It is very frightening.  In all of these situations I also experience a derealization along with it where I feel almost as if I am separate from myself and outside of my own body, watching, like a movie.  I can see what would be the result.  I have derealization or depersonalization quite often, not just in relation to this scenario.  It feels sad to experience life this way.

Well, a year ago, I had a moment that truly rocked me, as it was closer to the edge than I have ever come.  I was struggling with feeling alone and on a Saturday afternoon decided to take a walk by some ponds near where I live.  It was a beautiful fall day and it felt wonderful to be outside but I still just had all this emotion built up inside of me that I had not really processed and it was starting to break me open.  I stopped at a bench by the pond and suddenly felt a rage come over me.  I picked a stick up off the ground, just twirling it in my fingers and then started peeling the bark off of it in tiny strips.  Suddenly, without any conscious thought, I angrily snapped the stick in half, looked down and saw the sharp point, and then felt overcome with an impulse to jam it into my wrist.  I had never thought about doing something like that, and I did not head out that day with that intention or thought either.  It terrified me.  I fell down onto the ground, sobbing.  I fortunately had the wits about me to immediately call my husband and tell him that I almost hurt myself.  I felt ashamed of myself for allowing it to get to that point.  He asked where I was and told me he would tell them he needed to leave work and come to get me, but I said I could get home okay, I was okay, I had come to my senses.  We started looking for a therapist for me right away and I was able to find someone with expertise in scizophrenia, for the first time.  It ended up being shortlived due to schedules not working out.

It is nearly impossible to find good professional support for psychotic disorders.  I feel like I have to educate them and they just don't get it.  I feel like even the professionals have a bias and stigma against psychosis.  I have been fortunate to have good psychiatrists but I have had a rather disappointing experience with therapists understanding and supporting me with my psychotic features.

For me, it really does come down to medication.  Almost every time I have problems with episodes and symptoms, it is at least partially due to my failure to be consistent with my medication.  That was true of the stick incident.  There is a complete difference in my thinking when my medication is adjusted properly and when I get lazy.  I can feel the difference.  I can't even force myself to think in that way when I am balanced. This may be different from what others with different diagnoses may need to do to manage their situation best for their individual circumstances.  I believe for me, my ideation is tied more to psychosis than to depression, which is a whole different animal.  While I do deal with depression at times, scizoaffective disorder is complex and encompasses many other facets, in differing combinations at different times.  This is just my own story.

Please let some other person know when you are struggling.  This is real.  This is not your fault.  It won't be like this forever.  It gets better than it feels right now. 

Grounding Myself

I like walking for so many different reasons.  One night last week I found a new one, a "Sensory Grounding" walk.  The past two weeks have been getting a little bit more difficult with some of my symptoms.  I've had a couple hallucinations, my senses are on full alert, which can drive me bonkers, not to mention make my anxiety shoot way up and fuel my emotions and feelings of frustration or anger or discontent.  My paranoia has been getting a bit concerning as well, not to the point of scary, but to the point of me saying, "um, yeah, I've got to call my psychiatrist before this could become something.". I am at an advantage in that I have been through this enough and had therapy and done a ton of work on my own, so that I can recognize it and make a conscious choice right now.  This is one of the reasons medication is so, so important, and I was neglectful and lazy about it which helped trigger what I'm starting to go through now.  Medication takes the edge off enough so that you can be clear enough to think and do the work necessary to move through it.

I hallucinated my curtains bursting into green flames and the wicked witch form Wizard of Oz cackling in silhouette.  I also hallucinated white moths flying out of my refrigerator.  And today I watched a car drive by that appeared as if I was watching an old silent movie or something pixelated, it's like jumpy and missing frames and slow motion.  It's weird when this happens, like a glitch in my brain.  I don't know if this is a part of my hallucinations or more a part of my dissociating, which is another topic I'll have to delve into discussing in another post. Needless to say, this week I've had lots of twinges of feeling like I would crawl out of my skin, but I was working every day, so one night I took a grounding walk.  This is something I made up I guess, just by doing it, although it probably is a thing, but roughly based off of the grounding technique where you name and notice things relating to your senses that are real at this moment.  So like, things you can hear, see, taste, smell, touch.  I actually didn't intentionally do this at first.  I went on a walk and just noticed two snails on the sidewalk as it was right after a rainstorm, and I halted to watch them slowly move for a minute, which slowed my breathing, and started getting me to notice little things along my walk.  I always notice a lot when I walk, but this was a lot more focused and got me in to smaller details.  It was an interesting way to take a walk.  It reminded me of taking my son Cody for walks when he was four years old.  He had a fascination with sprinklers and walks took forever as he would stoop down at each sprinkler head at every lawn along the sidewalk to examine them.

Tonight I took notice in contrasts between colors, patterns, textures, light and dark, coolness and warmth, wet and dry, synthetic smells vs. natural scents, the way things appeared closeup vs. at a distance, the difference between how I felt listening to certain songs and quietness or sounds in the environment.  When was the last time you took the time to walk in such a way?  I highly recommended trying it out and seeing if it improves or balances your thoughts or mood or gives you a sense of stillness or gratitude, or eases any built up tension or anxiety.

I noticed different types, shapes, and colors of leaves, seedpods, stems.

         

I saw morning glory that was "sleeping" against tall blades of grasses.  

I saw how interesting it was that this one tree had purple leaves except for random branches that grew green leaves just right at the end then turned to purple further down the branch.  

I observed the "hinges" on a roly-poly as it moved.  

I found strawberries growing along a sidewalk. 

I was awed by the patterns of light and color on the clouds as the sun sank lower on the horizon.                            

       

I felt the coolness of droplets of water spray on my legs.  

                                           I marveled at the intricacies of color striations in rocks.  

I smelled the natural scent of dampened bark.  

I thought how there is even beauty in the head of a clover.  

I stopped at the neighborhood little library stand, which I have only ever left books in, but I found a book, I as a mapper, found intriguing, "A Map of the World." 

 

I was listening to songs that inspire me, but at one point I took of my headphones to just listen to the environment around me.  I stooped down and rubbed my hand across different rough textures which really helped calm down some of my sensory overstimulation.

I rock, sway and pace, and stim a lot with my fingers and hands and toes and pick at my skin.  This is something you may have heard is common with those on the autism spectrum, but it is also true for those with any type of psychotic or mood disorder.  There are some crossovers between the autism spectrum and psychotic spectrum disorders, which makes sense as these are both really brain disorders caused by miss-firings or over-firing of neurons and imbalances in neurotransmitters and brain chemistry.  Which is no different than any other physical ailment in the body.  I don't get why that is so hard for people to understand, when someone has psychological symptoms, it is a physical condition in the brain, not something I chose or can control.

My sensory walk was so insightful and I felt calm and at peace when I got home.

                                                                               

The next night I took another walk, this time I mostly was just enjoying the sensations of the breeze.  I then had a startling moment as I lifted my hand to push my hair out of my eyes.  I had a moment of hallucinating my hand covered in dried blood.  I knew it was not real.  But I kind of put my head in my hands and sighed because it felt a little defeating.  It didn't stop me up but I admit I hesitated for just a moment, remembering how this is my daily life, like it or not.  

Now I realized today that I had a couple more hallucinations over the weekend.  I saw people and cars that were not there.  I heard one of the cars honk at me and someone inside waved and said "hello."  I waved back.  My husband, nor our girls hear it.  I saw someone with a dog turn around when we approached them on an evening walk together and Matt walked ahead.  I watched the person walking behind Matt and looking back at me at the park.  Matt said there was no one there.  I watched them the whole time we were there lying in the grass talking.  I wasn't scared.  But sometimes it is terrifying and you get completely pulled in to it and nothing anyone else says can convince you that what all your senses are telling you is not reality.  I didn't have a clue it was not real until the next day, when I started questioning and asking Matt if he saw and heard any of it.  It appears completely rational and normal to me when that happens.  Except it's not.  And I am very fortunate I was able to figure it out this time.  When I have long stretches of stability I use that time to fortify myself and my mind to fight when the time comes to fight.  I can rely on my rational times to back me up so I can tell myself over and over what is real and is not, no matter what my head wants to tell me, I have to choose to fight like hell, because all of my senses will deceive me.  I'm proud of me, for choosing to keep fighting.  Sometimes my every inclination is not to, but I won't be broken.

More often than not it leaves me feeling isolated, misunderstood, judged, mischaracterized, minimized, unheard, unnoticed, unneeded, unwanted, and unaccepted.  This blog is just one little way for me to express, so if you have taken the time to read anything I have written, I hope something I say can help you see things with a little different perspective and that it can maybe affect how you might treat or view someone else in their journey.

*Disclaimer:  I am NOT a graphic artist and have no skill at blogging or layout.  So please, cut me some slack.  I know it isn't pretty.  Inserting the pictures of my walk was important to me, but the struggle is real.  😂

Running Shoes

 

This is the second time in a month and a half I have bought this pair of shoes.  I've been out of running form for a long time and have been working up the nerve to give it another go.  So I took a split-second look at the price tag, took a big gulp, and they were mine.  Then, they sat in my car for a couple weeks.  And then, they were stolen!  And my heart sank.  Because it's a big sacrifice to make a splurge purchase like that.  I didn't think I'd get another chance to buy another pair of running shoes for a long time.  But then I got some money restored to my account from a bunch of fraudulent charges I disputed, and I decided to buy the shoes again.  I'm walking around my house as I type this on my phone to start breaking them in.  Now I'm just waiting for a nice warm spell, because the clothes I have are not for cool weather and I'm still freezing.

So, I am now mentally halfway in between "booyah, let's get this party started," and "oh crap, what was I thinking?"  

There are a number of reasons why running dropped from my life.  The main ones being injuries.  The other ones being no one understands the intensity of what it is like to go through a divorce and be a single mom with schizophrenia, then juggle and put together basically 4 different families, and who knows how many former lives, along with 2 special needs children, and my own mental health and physical health challenges, all while working multiple jobs and taking graduate school classes and try to make some semblance of a life put of it all.  I'm sure there are some super women out there who would handle it all with more finesse.  But what I can say is that it's been real these past 9 years.  And I am ready to get back to that part of me, at least to some degree.  My body is a decade older and 2 major injuries and surgery beyond where I was when I was running.  So I'm giving myself a little patience and benefit of the doubt.  

It will be interesting to see how it goes this time.  My main motivation for running was never for the exercise per se.  It is for mental and emotional well-being and the brain games.  Although the physical conditioning does come along as a great little perk.  I am hoping my knee, hip, and foot will play nicely.  

I'm at a bit of a frustrating crossroads in my life, as I work to get back to some goals and dreams that needed to be on the back burner for awhile.  It's a balance between making decisions and making things happen for myself, and flowing with and accepting things as they are or will be, beyond my control, and being at peace in that space.  The lessons of running will help me with that balance.  

Where It All Started

 

I have spent a good deal of time trying to piece together in my mind the timeline of my mental illness and narrowing down where it all started.  Then just the other night I went for a night walk and a new piece of the information puzzle struck me.  I have never been confident to say that I started hearing voices or seeing things earlier than my high school years.  I do know that I had at least two distinct and strong visual hallucinations during high school.  I also know that I experienced clear cycles of depression both in junior high and high school.  But also, having experienced depression cycles throughout my life so many times, I am certain I felt real depression starting in second grade, despite what the childhood experts will say.  

When I was in eighth grade I remember standing in my bedroom, crying uncontrollably, and staring at myself in the mirror and feeling disconnected somehow.  I audibly voiced the words, "I think I am mentally ill," and being completely serious but not really knowing how or being able to explain why I thought so, just knowing I felt very different and separate from my peers and family members.  I remember reading a book in English about a girl who experienced mental illness and heard voices or had hallucinations or distress of some kind and she struggled with suicidal thoughts and self harm.  As we discussed the book in class I remember wanting to scream because I felt so much like the character and could relate so well to her feelings, while the things that were shared by my peers reflected that they did not think in the same way as I did.  At the time I was not actually having those psychotic experiences but her way of thinking and feeling just fit me perfectly while the other kids in the class and the teacher talked in such a way as to seem to pass judgement on her for feeling and thinking the way she did and they couldn't understand it.  I instantly knew I must never let my feelings and thoughts out of the bag.  I must always keep them tightly guarded and suppressed.  I knew I was not acceptable, I was flawed and broken, and no one could ever relate or understand me and everyone would surely see me with disgust if they knew. That would become the identity blanket I would carry with me from then on.  I spent every energy to cover up and appear "normal" and functional and to stay silent.  

Walking the other night I remembered something else.  There was a record I listened to when I was a young child called My Turn On Earth.   In it there is a girl who lives in heaven and learns about God's plan for his children to come to Earth and then what happens when they die and return to him in Heaven.  She comes to Earth and is born and experiences life.  There is the voice of an angel who call her name to let her know when it is her time to return home to Heaven.  As a kid I felt anxiety and fear about dying.  Even though I believed in the concept of Heaven and life after death and even that I would see my family again, I still had an overwhelming fear and anxiety  But I never expressed that to anyone.  It stewed and stewed and kind of took over in a way and I would obsess about it.  At first I would imagine I could hear someone calling my name.  But what I realized on my walk is that I actually began at some point to hear my name being called.  That's how the voices started.  I heard them always, in elementary, junior high, and high school.  And still today, that is how they first like to get my attention is to relentlessly call my name.  When I was young it was a kind grandmotherly voice, kind of like a faraway echo.  Then as I grew into adulthood it became an angry, demanding, screaming male voice.  And I was very threatened and put into that place of fear and anxiety almost continuously, but never telling anyone what I was experiencing or feeling.  As I have worked through a lot of my fear reactions to the voices and hallucinations, the voice has calmed and speaks a little more reasonably, but sometimes they get mad because I don't respond dramatically so they look for other ways to command attention.  

I don't hear the voices as often now; I am under professional treatment and have learned a lot of things about ways to cope and function in spite of psychotic symptoms.  I have what would be called breakthrough symptoms, meaning I am not having full blown episodes, but I still have symptoms pop up whenever they feel like it.  Take last week, out of the blue I had 2 auditory and 1 visual hallucination.  About a month or two ago I had a very strong tactile and auditory hallucination, a fairly rare occurrence for me.  On a daily basis I always have a running sound in my head, like a low hum or buzz or motor whirring.  I always believed it was completely normal and everyone had this, until I asked my husband last week and he informed me that it's not normal.  I posed this question on a group I'm on and I found out that many of the people with this disorder experience the same thing and also didn't realize everyone else doesn't.  

My hope is that as I work on getting brave to open up about my experiences, there will be someone else that can find their hope.  I know that I am not the only one who has spent the better part of my life trying to hide my uncomfortable and misunderstood parts and feeling silenced, alone, different, and judged.  Now that I have joined a group specific to my disorder, I am hearing this story over and over again.  As you read what I share I hope you will have an open mind and heart.  And realize this is a very tender vulnerable piece of my soul that I'm putting out there.  I have faith God has a purpose in wanting me to get real.

Walking at Night

 

Anyone who knows me well, knows that I can often be found going for walks at night.  I love to go walking, anytime.  But nighttime is my favorite.  One of my mottos is:  when all else fails, just walk.  Somehow the rhythmic stepping and breathing seems to put my jumbled up brain back in order and calms down my body.  And there is just something about walking in the dark under the night sky that magnifies the effect.  Maybe it is the coolness associated with the night air.  Maybe it is the darkness itself blocking out so much visual stimulation.  Maybe it is the stillness of nature.  Maybe it is the vastness of looking into the heavens.  I don't know for sure, but walks at night do more for my mental well-being than just about anything.  

I learned to love the night from my grandpa.  Most of my childhood vacations were spent visiting him at his homes in Southern Utah and Nevada and we were lucky to have him and my grandma come visit us usually several times a year.  We had many evenings sitting out on the porch, eating watermelon, making whistles out of reeds, and Grandpa telling us family stories, making us laugh, and telling us about the stars.  All those trips had us travelling all over Southwestern Utah, and I often had the privilege to ride with Grandma and Grandpa in his Buick or truck, with his cowboy hats and boots and Grandma's Pepsi, which she let me sneak sips from.  The thing that left the deepest impression on me from all of those drives is the sky.  I always remember looking at the horizon around the red plateaus and mountains, watching the sky and the clouds, witnessing afternoon thunderstorms form in the distance, seeing the colors change as the day turned into night.  

...And that is why I always think of Grandpa when I walk at night.  Grandpa had pure grit and he expected the same of us.  He expected us to fight a good fight and always keep going.  As I have travelled on my journey of mental illness, walking has become not only my go-to strategy to keep myself in touch with reality, it has become a solid motivator to keep moving forward, no matter how impossible it feels and fight my good fight.  When I am in my most difficult places of mental illness I automatically turn to walking.  At some of my worst moments, I would go for 3 or 4 walks every day.  We put in lots of miles on the jogging stroller when Cody was young!    When I can't muster anything else, the one thing I can do is take a breath, and step, step, step.  Sometimes I have to actively focus on breathing.  Other times it is distracting myself by focusing on the pressure and rhythm as each foot hits the ground and the release as it lifts off.  Sometimes I focus on the sound and feel of the air in my hair and on my face and arms.  Often I walk in silence.  Other times I need music to ground me and give me words to encourage me.  The best walks are when I can look up into the sky and see stars against the darkness.  I don't want the walks to end as it is the one time I feel peaceful and life and my thoughts are less confusing.  I feel gratitude for my Grandpa teaching me to look up at night.

Introductions

Hello out there!  I've been away living my life and just making it through one day at a time for quite some time.  In that time I've never found a place to express my feelings and experiences living and learning with Schizoaffective Disorder, psychosis, and Generalized Anxiety Disorder.  It feels like a heavy weight bearing down on my shoulders and chest, squeezing the life and breath out of me as I try to chin-up and put my best foot forward, but really no one in my life understands what it feels like.  And that has led to feeling like I am judged and criticized harshly on every side, behind closed doors and under people's breath.  Because I don't function like normal, I don't fit-in, I don't appear like I've got it all together.  And guess what, I don't care that my life doesn't look picture perfect and normal.  Gasp!  I'm controversial and socially unacceptable, I know.

So I have decided to start writing about my experience and letting the world take a little peek.  Maybe it will help me get it off my chest,  and that will be freeing.  Maybe it will open a few eyes, and that will build understanding.  Maybe it will bring a little hope and peace to someone who feels alone, scared or unheard, and that will be a blessing.  I'm not sure exactly where to begin or how to break it all down.  But here goes...

My name is DeAnne.  I have Schizoaffective Disorder and Generalized Anxiety Disorder.  I can hear the question, what the heck is Schizoaffective Disorder?  I will go into more scientifically backed detail throughout later posts, but just for a quick rundown, it is like having a combination of symptoms of Schizophrenia and a mood disorder, all at the same time.  There are both depressive types and bipolar types.  Someone with the depressive form would be like having both Major Depression and Schizophrenia, while a bipolar type would be experiencing both bipolar mood cycles and schizophrenia.  When I am talking about schizophrenia, there are many symptoms associated with this disorder, but the main component includes psychosis, where you sense things that are not real, have delusions, paranoia, and have a break from reality.  Sometimes people with Bipolar may experience psychosis, but the difference is with Bipolar, the psychotic symptoms must coincide with the mood cycles, whereas in schizoaffective disorder, the psychotic symptoms are independent of the mood cycles, so it really is like having two separate mental disorders at the same time.  Trippy.  The difference between schizoaffective disorder and schizophrenia is that schizophrenics have what is called a flat affect, so no mania/hypomania and mood swings happening there.  That's where it gets confusing, because I experience mania/hypomania and depression cycles, but I also experience flat affect or no emotion at times.  Now throw into the mix another disorder, Generalized Anxiety Disorder, and it's quite a party going on all the time.  Now in reality, there is an extensive list of symptoms and I have experienced nearly all of them to some degree.  There is also an extensive list of side-effects from treatment and again, I have experienced many of them.

There is so much misunderstanding, fear, and stigma surrounding schizophrenia and psychosis, as well as other mental disorders.  But really, come on.  Think about it.  Those of you who know me, am I really that scary or strange?  Am I working, living, and accomplishing things every day?  Guess what?  I am one of the faces of schizoaffective/schizophrenia.  

My name is DeAnne.  I am a paraprofessional in a special education classroom.  I work weekends in a chocolate factory.  I'm a student in a graduate certificate program.  I am a mother to an autistic boy.  I'm a step mom.  And a wife.  And a friend.  And a daughter.   And a sister.  I love peanut butter and Indian food, walks in the rain, and Star Trek.  I've got goals and dreams.

If you have any interest in gaining some insight into what it is like to live with this disorder or if you'd like to see what strategies and tools help me cope and function, or some of the lessons I have learned about life, I invite you to join me in this little adventure.