Saturday, January 31, 2015

Surprising Dr. K.

I had to laugh the other day during Thomas's therapy session because Dr. K. was a bit scattered and because of that he missed some of the things that Thomas and I were saying. This man has A LOT on his plate because he does both therapy and also works for the state. I always forgive him missing what we say because of that. However, he missed the good news but was surprised and delighted when he finally got it.

I did get called into this session this time which made me happy. Let's face it, I am used to being a part of it now and I like to be in on the reports and the plans for Thomas's recovery. We first discussed Thomas's plans to branch out and do something away from home that would get him socialized. Apparently last time they had talked about Thomas either joining a model train club or taking a class. Dr. K. had pulled up on his computer our local train club and lo and behold they were going to have one of their once-a-month meetings this coming Tuesday. Thomas actually wants to go to it! For as long as I can remember he has loved trains, Thomas The Tank Engine being his first. I really wish I could find a picture of him with his set to show you guys. Anyway, come Tuesday, Thomas will be at a meeting about model trains and I am surprised that he's actually seriously thinking of going.

Dr. K. and Thomas also talked about Thomas taking a college course. This wasn't received as well by Thomas. The more we talked the more it became evident that Thomas didn't want to take a class. His reason was because he felt he had to choose between having a job or taking the class. I told him he could do both because one class wouldn't overload him but he disagreed vehemently and explained why.

He feels that doing both would cause him a great deal of stress and he's worried about his stability. First let me give him kudos for recognizing that he wants to hold onto his stability and that he recognizes his limitations. He went on to explain with a shaking voice and fear in his eyes that he can still remember his senior year of high school (that's when his schizophrenia reared its ugly head in a big way) and the amount of stress he was under and that all of that had culminated in a week long hospitalization with him almost missing his graduation ceremony. He's still sufficiently scared of that time in his life and it's apparent that he doesn't want a repeat of that. So, I backed off of encouraging him to try to do both work and one class and I felt terrible for him because he those memories are still so fresh.

Then it came up that Thomas had walked to and from work. This is where Dr. K. missed the boat. We had told him Thomas had done that walking and he totally missed the fact that Thomas had also walked home IN THE DARK. I kept looking expectantly at him waiting for his response to that fact and he said nothing. Finally I made a point of saying to him with emphasis,

"HE WALKED HOME IN THE DARK TOO."

Then it happened.

"What?" he said.

"Yes, HE WALKED HOME IN THE DARK." I repeated.

It was then that he sat back in his chair kind of collapsing and he was in shock. It was so much fun because I could see that he was truly surprised and excited for Thomas. Then he ran Thomas through a battery of questions:

"When you walk home in the dark do you feel like you're being followed?"

"No."

"What if a police car drives up behind you? Does that scare you?"

"No."

"What if a police car drives right behind you really slowly, what would you think? Would you think he's after you?"

"No. Because I'm not a criminal. I have nothing to worry about."

"Really????"

"Yes."

Dr. K. was completely dumbfounded and I was smiling from ear to ear because it had been such a fun surprise to reveal to him. We talked a little more about that and then I was excused from therapy.

I retired to my chair in the waiting room and texted people and played games on my phone. During that time Dr. K. came out of his office 3 or 4 times to talk to me. I will talk about some of that in another post but one of the things he really wanted me to do was to be sure to support Thomas door to door as he went to this model train meeting. Before leaving the session I had stated matter-of-factly that Thomas would be just fine walking to it. He needs the exercise and it's not that far from our home. However something must have transpired in session (I'm thinking that Thomas was anxious about doing this completely alone) and the new plan was for me to be with him, at least drive him to and from the meeting.

Beyond that, the other reasons Dr. K. emerged from his office 2 more times, I will write about in the next couple days. There are new concerns about Thomas's physical health and that needs to be addressed.

In the end, for the most part, the session was A LOT of fun. It was so much fun to reveal that Thomas had comfortably walked home from work in the dark and Dr. K.'s reaction had been priceless. We are all impressed by Thomas's changing mental health and as time passes I can't wait to see what happens next.

Friday, January 30, 2015

Friday's With Tom--My Auditory Hallucinations

 
Hello guys, Tom here and welcome to my blog.

A while ago I heard voices in my head. Many of you know that the one voice I did hear was running commentary that was in my head commentating everything I did. For example, I would get ready to sit down and the running commentary voice would say “You are going to sit down.” That was one of the voices I heard.

One thing I also heard was the cliché blood curdling scream of a woman. You know the one from horror movies? Yeah that one. It woke me up at night when I heard it.

The last thing I heard wasn't really a voice but a noise that made me beyond scared. That would be static. “Scared of static?” well I used to believe that a fictional creepy pasta character named Slender Man was after me and the static was his way of showing that he was coming for me. That made me scared to the point that I had to be hospitalized at I think one in the morning and left me in the hospital for about a week if I remember correctly.

Now-a-days I no longer hear the blood curdling scream nor the static and the running commentary has gone away. I had to learn to ignore the running commentary and the screaming went away on its own and I had to be desensitized to the static while I was in the hospital.

Without the commentary it’s been really quiet up there. My thoughts are free to roam around without something being louder than them. I don't really miss that commentary anymore. There was a time when I did but I grew to be perfectly fine without it.

Well that's it for today's post, as always, stay beautiful.

Good News, Big Changes

Yesterday was a big day for us in that we traveled all over creation to see doctors. Thomas had both a meds appointment with Dr. N. in another town far from our home and I had my own appointment with my own psychiatrist and then Thomas had therapy. I think I will cover my own appointment in another post because I think what I learned would be relevant even though it is bipolar I deal with and not schizophrenia. There are lessons to be learned from my journey too.

Thomas's meds appointment went well. Really well. Dr. N. kept asking if I had anything to say or anything to report and I couldn't come up with one single solitary thing. I mostly just sat there smiling like a proud mama with her "successful" son feeling for the first time in a long time like Thomas and I may ACTUALLY BE ON OUR FEET as far as his illness goes. Dr. N. reiterated that he will not be touching Thomas's meds for another 4-5 months and I was happy about that because I don't want to interrupt this stability phase with any nonsense of jockeying meds around. I also inquired about Thomas's blood tests that he has to get every two weeks to check for white cells counts for his clozaril and I asked if we could switch to once a month. Dr. N. looked through his computer and discovered that Thomas had had good counts for more than 6 months so that means now we can go to once a month blood tests. Thank God! I feel so bad every time Thomas has to get stuck with a needle but that kid handles is like a champ. He's gotten used to it.

Then I did it. The question I had been wanting to ask for a few weeks now but didn't feel ready to. Yesterday was the day, though, so I asked Dr. N.,

"Do you think we should switch over to once a month meetings instead of once every two weeks?"

Once. A. Month.

Do you know how long it's been since we've been able to go a whole month without checking in with a psychiatrist? To me this was a momentous occasion and Dr. N. agreed we could switch but made sure that we understood he was here if anything changed and that he'd get us right in if anything did.

So Thomas and I left Dr. N.'s in a great mood. I'm not sure that Thomas fully understands the gravity of what had taken place in that appointment but that was okay. I knew what a wonderful meeting it had been and that was enough.

Now, as I type this, I realize that this post could get way too long if I try to cover what happened in regular therapy so I'll leave that for tomorrow. It was an "interesting" session and at the same time a good one so I'll have to share that with you later. There are new things on the horizon for Thomas both mentally and physically so even with stability there will still be sometimes monumental bridges to cross. It's never really over once the delusions and hallucinations go away. There is residual cleanup but with Thomas being stable I'm hoping that it'll be a little easier to do.

Thursday, January 29, 2015

They're OUR Kids

I sat and watched a show called "The Celebrity Apprentice" last night and for those of you who aren't familiar with this show it is where a bunch of celebrities get together to work for Donald Trump and win money for their charity. What struck me while watching the show was when it came time for one of the celebrities to announce his charity he talked about this rare disease that affects children and how it's close to his heart. He then faltered and stopped and then said almost in defeat,

"They're kids."

As if that is all we needed to hear. Little kids who are suffering from some kind of condition. As if only kids deserve this kind of regard, this kind of treatment, this kind of heart.

Now, yes, kids are precious. They are innocent. They haven't lived much of a life because they are so young. They are deserving of unconditional love. However, with all of these charities being played for and money being raised for, I felt like something was missing. Perhaps it's because I have my own cause near and dear to my heart but I thought about that statement "they're kids" and I thought to myself right away about our own children suffering with schizophrenia and I thought,

"But they're OUR kids!!!!"

Yes, our kids are 12 and 18 and 25 and 45 but we are still parents to these kids, we watch them suffer under schizophrenia's heavy hand, we long to hold them and make it all better like we did when they were 5 because even now, at 25, they deserve to be held close. We pray for God's good grace for them to help them reach recovery for a time, we care for them by giving them a place to stay or money to survive on, or we take them to the psychiatrist's office or we sit weighted by grief in an E.R. waiting for a doctor to finally LISTEN and see what we see and want to help our kids with whatever they are dealing with be it voices or delusions, among other things. We mom's and dad's have raised our kids, granted they are older, but

They're OUR kids!!

I say that pleading to the powers that be, the ones who have the power to exact change in society, the ones who have the money to make a difference, the ones who have celebrity attached to them where just a Tweet or two or a mention on Facebook from them would shake up the world and make everyone turn their heads in our kid's direction and want to take up arms against this debilitating mental illness on behalf of our kids who can't fight for themselves and who we fight for daily but can't make a loud enough noise to be heard.

Now, at times I use my forum here to make some noise, in fact every day to some degree is my battle cry however there are days like today where I stand stiff legged, arms straight at my side with my fists clenched and I stand somewhere high up and I SHOUT

They're OUR kids!!!!!!!!!!!!!!!!!!!!!!

In the end, though, we are not featured on a show like Celebrity Apprentice, there are no celebrities announcing PROUDLY that they have a mental illness like they do when they talk about having depression or sometimes bipolar. Nobody wants to say,

"Hey, I have schizophrenia" or "my loved one has schizophrenia" so "please pay attention and help us reach the goal of mainstream awareness where we can once and for all give the love and compassion these people so richly deserve and even raise money for research and awareness!" There is no pride behind a diagnosis of schizophrenia. There is only fear and derision. Our children are outcasts, their stories told in the media because of the act of one man in schizophrenic distress as if he defines all of the rest of us.

The truth of the matter is this. Here we are living quiet lives. Some of us with kids who struggle in silence or who are nearing recovery or who are standing on their feet but suffering terribly. Here we are living still quiet lives even when this illness is at it's worst because our kids suffer in a kind of silence that actually speaks volumes to us as parents. They cry out in tortured anguish about the voices that cruelly taunt them or they demand to be left alone because they believe we are the enemy planted in their lives to make them do something they don't want to do. We are living quiet lives only because we have been pushed away, hidden away, and not talked about. We are pariahs and we are ignored.

The thing is, though,

They're OUR kids!

Haven't they lost something too? Haven't they been robbed of promise, of a life so many are afforded and yet they can only look to as a dream that doesn't always, in fact most times, come true? Aren't they robbed of THEIR innocence, as are we as parents, as we stand helpless while this illness runs our lives for us deciding in its own time when a day will be a good day and when it won't?

All I ask as I stand here today with my clenched fists and loud voice is for a moment in the spotlight. A moment where someone speaks and many more listen to stories about schizophrenia and what we need in order to survive. We need more research both into the biology of this illness and into the medications used to treat it. We need more awareness, a campaign, a rubber bracelet, an Ice Bucket Challenge. We need compassion, we need love and we need to be heard.

So my wish for today is for a voice. I am using mine now but I need many more. I need people to OWN this illness and find value in our kids enough to want to share the stories we keep locked inside ourselves. I need so much more than what we're getting and I need, once and for all, for the rest of the world to see OUR kids worth and beauty and fight and heart. They are so much more than their diagnosis,

They're OUR kids!!!!

Wednesday, January 28, 2015

In Then Out. Again.

First of all I want to thank all of you for responding to yesterday's post with a sweet compassion that I really needed. I thank you all for sharing your own stories and advice. I sat here in tears this morning as I read each and every one of your posts. I get so wrapped up in Thomas's life and telling his story that I forget sometimes that you guys support me too, even in things outside of Thomas's schizophrenia. You all are amazing and I can't thank you enough for all that you do and for your participation on my page. Not only do you care for me and Thomas but you go above and beyond by sharing the articles I have been posting lately and you're commenting on them too with your opinions and I absolutely love reading your thoughts on the articles because when I read them I see them my way but when I read your comments I see them in a whole new light. What a wonderful learning forum we have here, a lot of us unafraid to share our own stories and thoughts. I couldn't ask for more.

I wanted to update you after yesterday's post. With my version of bipolar I cycle quite a bit and sometimes go days depressed or mixed and then suddenly a light comes on and everything seems fine. That was my yesterday. I don't know what my light was but I was able to fold the laundry that had piled up, I showered and took care of myself and I made Thomas's favorite dinner. He had come in earlier in the day to grab a snack from the kitchen and saw the ingredients sitting on the counter for dinner and he asked what we were having and when I told him he said,

"Oh okay, then I'm going to save my appetite for dinner tonight."

(insert big smile from him here)

This made me happy because I knew I had given him something to look forward to and I knew I was going to fill his belly with something he truly loved. After yesterday I really needed to be able to do something nice for him to show him that I hadn't disappeared completely.

At dinner time I asked him to come in the kitchen and decide how much of the enchiladas he wanted on his plate and he took a HUGE portion and went and sat down to eat. I relished watching him eat and he even thanked me twice for making it and told me more than once how good it was. There was some left over and he works tonight so I saved the rest for him to have for dinner tonight before work. That will make him happy.

As for yesterday, Thomas was out in the living room again with me all day. I came up from walking on the treadmill and there he was just sitting in the living room watching YouTube on his phone. He had been waiting for me. Throughout the entire day he stayed by my side in the living room and I think when he could finally see I was doing well he retired to his room to play a game. Many of you said I should open up to him and gently tell him I'm struggling and often I do because I don't want him feeling responsible for my moods--like he CAUSED them. In the absence of me talking to him, we still have a bond that is strong enough that he just knows when I'm not doing well. I think that was what yesterday was all about. He knew I was struggling and he silently stayed by my side.

Thomas really is a remarkable young soul. For all that he battles, he finds time to take care of me too. When he's at his worst he's still in tune with some of my moods but when he's well he is a champion at reading a situation. At least where it involves me. He has done this since he was probably 3 years old beginning with bringing me a Kleenex when I was crying and he has never wavered in his love and support for me. I am a lucky mom.

Today is a new day though. It seems the good day from yesterday has evaporated as I have woken up now shaking and tearful and dreading the day. True to form I have cycled again and find myself in a new day with new emotional/mental battles. My husband, Dan, is home from work today and we are all excited about our favorite NFL team (Seahawks) in the Super Bowl so the plan for today is to go shopping for a bunch of junk food to eat while we watch the game. Most importantly about doing that will be me inviting Thomas to go with us and letting him pick out his snacks. He will love that. 

So, I live to fight another day and in part because of all of you and your support. I am humbled by your words and grateful for your love. I only wish I could repay you in some way.

Tuesday, January 27, 2015

Caregiver Depression

Once again I wouldn't be me if I didn't open my life up to all of you and speak candidly about how I feel and what I think. I will make another attempt at that today about something that might either hit close to home for you or make you lose respect for me. Either way, this is my story and I tell it in the hopes that it will help others.

For weeks now I have fought off mixed episodes of bipolar. For those of you who don't know, a mixed episode is when you have features of both mania and depression. It's a crippling condition to have because, at least for me, feeling seriously depressed but also in need of go go going in your life and in your mind is hard. I have been fighting this off hoping it'll subside but unfortunately it's getting worse. For those of you who have been on my blog a long time, you know I fall into this cycle of my illness in winter and I work to battle my way back from it as fast as I can. I'm at the point, though, where I need help but I don't know where to turn (which adds to the depression).

Lately I have found myself in the early afternoon's back in bed curled up trying to sleep away the day but unable to shut my brain down. I have spent a lot of time just sitting on the edge of my chair in my living room and staring at a blank (turned off) TV trying to get myself and my mind to do something, ANYTHING. My only solution to everything is to crawl in bed, pull the covers over my head and pray for sleep to come and for the day to be over. Which brings me to yesterday.

I can tell that Thomas knows there is something going on with me. Just as I am in tune with the ebbs and flows of his illness he does the same for me. This upsets me because he has enough on his plate so he doesn't need to worry about me. Yesterday, however, there I was coming out of my room dressed in all black, yoga pants and hoodie and slippers with the main goal of going into the living room and staring at the TV. Bless his heart he came out of his room bright eyed, happy faced and he said in need of a place to go. He didn't want to sit at home anymore.

I'll admit, I groaned inside because I know when he needs to go somewhere it's for a good reason, he's escaping something. I didn't want to go though. I didn't want to put on makeup, I didn't want to change, I didn't want to do anything so I enticed him with a movie that we've been wanting to watch together. We sat down and watched the movie and afterwards he just sat there expectantly, saying nothing, but in saying nothing his body language spoke a thousand words and asked a thousand questions. He wanted to go out. I told him to call some friends, which he did, but then he just sat there in the living room.

He just sat there.

And it drove me crazy.

This is where I realized later that I was a hateful person because the longer he sat there the more I willed him to go back to his room and watch his videos and play a game. I have spent months wanting to see his handsome HEALTHY face in front of me and instead I just wanted desperately to be alone and curl up in a ball.

Here's the thing about all of this and it only hit me later after it was too late. I remembered back to my dad and his final weeks when it got so hard to go and see him. Sometimes I would opt out of going with my mom up to see my dad and instead I'd stand in my driveway smoking and hating myself but not being able to go and see him because it hurt too much to see him declining. The day he died he had asked for me in the morning and I didn't want to get dressed so early and I wanted to tie up loose ends around the house and so I decided not to go. I didn't know that that was going to be the last time I would ever see him again. My selfishness, my inability to get myself together to go and see him, haunts me to this day. It was those thoughts that made me turn my attention to what I had done with Thomas earlier in the day. Here I had a healthy young man, finally after all this time, and I wanted him to leave me alone and go back to his room. I wanted to sleep and I wanted to be alone and I just wanted to suffer through my symptoms on my own.

Here is the big question and the thought that ran through my head over and over as the evening wore on. What if he dies? What if I lose him and yesterday would have been my last day with him to spend with him bright-eyed and eager? What kind of person was I that I took for granted his beauty, his good health and his loving nature?

I hate myself today. I hate that I did that. I hate that I'm sick myself and in need of help for my own issues. I hate that how I feel affects how Thomas feels. I hate mental illness and the destruction it leaves in its path. I hate how it robs a person, both Thomas and now me lately, of our essence and we become a shell of our former self.

Needless to say, the tides have turned. I am the sick one now. Thomas is doing beautifully and now I'm not. It is a cruel fate he and I live and I hope that things change for me soon so that I can join him in his healthy life and for one day, when he's bright-eyed and eager, join him on an outing of his choosing

Monday, January 26, 2015

Alone In The Dark

Among all of the pronouncements coming from Thomas the other day about wanting friends and other things came an announcement that he would now be walking to work from now on. That was a couple of days ago and I didn't think it was going to happen. Then last night he had to work and guess what? At 4:25 Thomas set out for work on foot. Alone.

I waited to hear from him once he got to work and heard nothing so I had to assume he made it there. I could make myself alright about that because it had been light out and he had probably not had time to text me.

As the next 5 hours of his shift wore on for me I began to think about... no, SERIOUSLY WORRY about him walking home alone in the dark. at 10 p.m. My brain, that is not nearly at its best right now due to a dark depression that has crept over me the last few days, began to imagine the worst as I realized that he'd be walking, defenseless, home alone in the dark.

I see kids his age do this all the time. I'd say nothing bad ever happens in this town like a lone walker being attacked but I know that drill. People always say: "Not my town, we were such a quiet, safe community." I have heard that over and over and I couldn't help but let my mind drift there, to the bad place, where Thomas might not make it home safely.

Then the time came for him to come home and I got a text. Thank God. He told me he was leaving work and that he'd be home soon. I told him "okay" and that I loved him and I waited and watched the clock and ravenously polished off a Milky Way caramel candy bar, the only thing I could find to soothe my worry. Naturally it didn't work so I waited, empty wrapper in hand, glued to the clock, waiting. I thought about how he had his medical alert dog tag with him that I had up to date information programmed into it and I even thought of his tiger eye talisman that he still wears for protection--left over from the whole "demon inside of him" incident--and I had to believe those two things would keep him safe. If he were found lying beside the road, the cops and paramedics would have all of the information that they needed to treat him and contact me. This new desire of Thomas's to be independent was eating me alive but I wanted this so badly for him, to be independent.

By 10:30 I heard him at the door and I curled up in my chair and tried to act nonchalant about his arrival. I didn't want him knowing that I had worried so much about him. When he came in the door I didn't rush to his side, pepper him with questions about whether or not he had felt paranoid and I simply, quietly asked him how his night at work had gone.

Stacey had been there so it had been a good night.

Then Thomas stood before me for a few seconds and I didn't catch what the meaning of that was because I was so busy acting like I didn't care, that I hadn't worried, that I hadn't binge eaten a candy bar in record time in an effort to assuage my fears. It turned out, and it dawned on me within seconds that he was waiting for a hug.
I was out of my chair, in front of him and wrapping my arms around him as hard as I could. I told him his face and ears were cold and he half laughed about it and then let me go and went into his room.

He had made it. He was safe. None of my imagined monsters had gotten ahold of him and none of his monsters, apparently, had followed him home during that long walk in the dark.

Here we are again, now, another indicator that he is working towards independence. His bravery and confidence is palpable and my insecurities are eating me up alive. I am bound and determined to keep them to myself and support his efforts to become independent doing things like walking in the dark. I may self-destruct emotionally in the process but he will never know. As far as he's concerned I am truly excited for him--and I am, I'm just scared here and there--and it will stay that way.

I am interested in what comes next down the dark road ahead of him. An apartment? Starting college? Or maybe just a grand show of how independent he can be by doing more around the house like cook for himself or wash his own clothes.

We shall see.

Saturday, January 24, 2015

From A Precious Young Woman, Hannah Miller, Who Bravely Shares Her Story Here For All Of You.


This is Hannah's story about what it's like to live with schizoaffective disorder. Thank you Hannah for bravely letting me share this with the world. You are truly amazing!


Stuck in Wonderland
---------------------------------
Ever been stuck somewhere and there are no ways out? Everyday is an endless battle of trying to climb out of a rabbit hole that you somehow fell into. One day you think you know who you are and with one word your whole world gets shattered into pieces and your grasping at all of them to try to bring you back to where things made sense. But at the same time, you are just wondering if anything ever really made sense?


Have you ever been down the rabbit hole filled with false beliefs and delusions tucking you in at night? Not knowing what is real, who is real and if anything is real at all? Ever been stuck inside of your own head screaming, begging to come out just desperately begging for a moment of peace? Where voices that are not your own invade your every thought, giving their opinion and expecting you to believe it to.


One word changed my whole life. A word that made others look at me different. A word that has so many meanings.


Schizoaffective disorder.


Most people do not even know about schizoaffective disorder because it is so rare. It is a form of schizophrenia mixed with a mood disorder.


Since that word came into my life, my life has not been the same. I live clinging to what people tell me is reality. I live in constant fear that today will be the day I lose grip of reality. I live in fear of my own mind. Sometimes I wonder what life would be like if I didn't have this disorder. I wonder what it feels like to be able to leave my house without paranoia. I sometimes wonder what living would feel like without fear.


Although it is hard on me it is also hard on my family. They live in fear with me. It's not easy to love someone with this disorder. I know that they wonder if today is the day we have to send her back to the hospital. Or is today the day she loses all touch of reality. They are the ones who have to watch me cry and beg for peace yet there is nothing they can do to help. So they feel helpless. As much as it hurts me it hurts them as equally bad. They have to be strong because at times I can't be. They have to put their lives on hold when things get bad in mine. Even thou I have them to hold me up and to help with the fear they have no one to help them with this. They live in fear with me.


Its funny how one word can change everything about you. How taking medication everyday so that you can function in a world that doesn't understand you. Living in a world that is scared of you because of what they hear in the media. One word, one moment, can change how people look at you and how people treat you. At first people stand by you and tell you everything will be alright. But slowly they disappear.

--Written by Hannah Miller
Page member and courageous contributor

Please share your thoughts and support for Hannah in the comments section. I'm certain she would love to hear from all of you. <3

Friday, January 23, 2015

Friday's With Tom--My Job

 
 
Hey guys Tom here and welcome to my blog. Today I'm going to be talking about my job.

I like my job, it’s easy to do. What my job is I go around the store and make sure items are on the shelves correctly and that items are in the right pl...ace. I also do whatever small task that the manager that is currently working wants me to do.

The one thing I don't like about my job though is that I'm not very social with people. The only time I talk with people is when I'm asked where something is.

There is one manager at my job that I like the most and his name is Stacey. The reason why he is my favorite is because he always says “Thank you” when I agree to do a task he assigns me, which makes me happy.

Work is a little bit hard to do when I'm having a hard time. The biggest things that usually happen are that I get dizzy and I zone out for a while and have a little bit of depression. The depression usually goes away after a while along with the dizziness. But I have to fight to keep myself from zoning out.

Well that's it for today's blog post, have a good day, and stay beautiful.

Head Down, Eyes Averted

Since Dr. K. follows this blog I thought to myself going in to Thomas's therapy that I wasn't going to be invited in because I was certain he had read some of the posts about how good Thomas is doing. I sat in the waiting room and texted with my sister and I joked with her about how I'll be rejected and that my services are no longer needed in Thomas's therapy. A part of me was laughing but to tell you the truth, a part of me was kind of sad and felt the impending "rejection" looming. I do realize that it's nothing personal, that it's not that I'm not doing something right in my role as Thomas's caregiver but I have come to appreciate being in on Thomas's sessions so that I can offer something up for discussion. The truth of the matter was, though, I really had nothing to offer anyway. I couldn't even conjure up one little thing to weasel my way into the session. This is good. I know that. Don't get me wrong here. I just felt........

Lost.

As I sat there texting my sister I kept my head down and my eyes averted from Dr. K.'s office door. I knew any minute he'd be out and I wasn't totally prepared for what I knew was about to happen. When he came out we made eye contact and he said to me,

"If you don't have anything significant to report then you are free to go."

Go?

Go where?

This is where I belong.

I shook my head indicating that I had nothing to report and he took Thomas into his office and I just sat there in the waiting room for a little bit contemplating my new fate. Go. But where? Home? To shop? Where?

So I decided to just sit there and play Trivia Crack (it's a fun game, check it out) on my phone. Within a few minutes I was hating the chair I was sitting in. I missed Dr. K.'s warm office with a fireplace and my comfy, though low to the floor and hard to get out of, chair. I was getting cold and my car with its heated seats and blasting warm air became much more appealing. Besides that, there's no smoking or vaping allowed and I needed to go vape away the anxiety I was feeling. So I headed out to my car and sat in the parking lot in the warmth and rifled through Twitter looking for things for this page for all of you.

When Thomas came out, he was in a GREAT mood. That made me happy. At least therapy had gone well enough that he came out happy. I asked him how it went and he said, "Fine", and I knew that was all I was going to get out of him. Besides, it wasn't my therapy session to be privy to anymore. It was no longer about Dr. K. and I together helping Thomas. Instead it seems that now it's about Thomas helping Thomas and that is a good thing. A big step.

We headed for the bank so Thomas could deposit a check and I asked him,

"What are you going to buy with the money?"

Another gun, another BB gun. Ugh. Why? I am NOT A FAN of these guns even though they just shoot BB's. I don't like the image of him holding a gun of any kind and this is something I have fought him about since he was young. Now he's wanting another one. Great. I let my displeasure be known only by way of not showing any excitement about his planned purchase. I can't really say no to him, that he can't get the gun, because he's no longer my kid under my rules. Saying anything about it is pointless so I tried to brush it away. Truth be told, I'm angry about it. I don't want him having guns of any kind. I've never liked guns, they scare me and most of all I hate seeing them lying there on Thomas's bedroom floor. There's nothing I can do, though, so I just let it be.

Next we went and picked up his meds and Thomas waited in the car while I went in because he was setting up a "hang out" with Patrick (yes, again) and wanted to sit in the car and text with him and make plans. In I went, into the pharmacy, and I picked up the meds and came out to discover that Thomas would be leaving for Patrick's the minute we got home.

What a day it had been! There was nothing on earth that screamed "stability" more than being booted out of therapy and then left alone for the evening as Thomas went to Patrick's house. I can hardly believe that it's happening!

I am actually now headed into the phase of relief, of not worrying, of relaxation, of not wondering what's next. I'm putting faith in this stability and I am going to relish it for now. Thomas is bright-eyed and social now. He's actually a real live 20-year-old kid living a normal life.

I wonder what's next for him?

Thursday, January 22, 2015

I Want Friends!

It was rather cute but surprising the other day when Thomas and I were riding in the car and he announced to me that he felt like he needed to hang out with his friends more and that he was going to get ahold of them.

WHAT?

REALLY?
Did he just say that? HE'S going to get ahold of them?

This was so good. Such a good announcement.

We arrived home and he disappeared into his room. I figured all of his talk was just that. Talk. Then within a few minutes he emerged and asked if he could go over to Patrick's. Patrick is one of his best friends. Patrick has always watched over him. Patrick was the only one to call and see how Thomas was doing when Thomas was hospitalized the 3rd time just before graduation. Needless to say, I love Patrick. When the two of them get together they mostly play video games but Patrick has ALWAYS been mindful of exactly what game they play because he knows Thomas is susceptible to the scary ones and he doesn't want Thomas to have any problems later on after seeing something scary. THAT is a good friend.

When Thomas came out of his room he told me he was going to go hang out with Patrick. I was overjoyed. I put him through his paces though asking him exactly how it had gone down.

Did you text him?

What did you say?

What did he say?

When are you going over there?

For all of my excitement, Thomas remained relatively stoic, unaware of the great feat he had just accomplished. For those of you who don't know Thomas, he doesn't do this. He NEVER initiates a "hang out". He ALWAYS waits for someone else to invite him which happens rarely.

Off he went to Patrick's just before twilight and I immediately thought to myself,

"There is NO WAY he'll walk home afterwards in the dark."

I was wrong. After staying there a couple of hours Thomas texted and told me he was coming home. I wanted so badly to ask him if he wanted me to pick him up but I knew this was one walk in the dark he needed to take to test his paranoia and fears. In no time at all he was home and happy as a clam because they had fun playing games and hanging out together. He had even stayed for dinner.

Then the next day I was taking a shower and he was pounding on the door to the bathroom. It scared me to death. He rarely does this. When I shouted "WHAT?!?!?" at him he opened the door and asked me if it's alright that Cole come over.

REALLY?
Someone's coming to OUR house?

"Yes, of course kiddo, when?"

It turned out that Cole was going to spend the afternoon with us watching YouTube videos in Thomas's room. Cole, on the other hand, compared to Patrick, is a little bit of a different story in terms of how I feel about him and the friendship. Cole and Thomas have a checkered history in that together they kind of ended up in a "bad place", the two of them egging each other on into some bad ways of thinking. Cole has a small affinity for Nazi Germany (or rather he did back when the boys were in school). He was an angry child, he was, and is still, a disheveled kid, he wore some unknown (to me) military medals and clothing pieces. I know at one point he had it out for a couple of his teachers and for the high school and I had been on the phone twice to the school to warn them about him. Cole is an amicable kid around me and my home but something else brewed inside of him at that time. Honestly, Cole would have been the one who would come to the school and shoot up the senior class. Not Thomas, the schizophrenic kid. His father has an arsenal of guns because he buys and sells them at gun shows. I always worried about Thomas at Cole's house because I knew that then Thomas had that same access to those infernal guns. I always kept an eagle eye on Thomas after he'd spent time with Cole but at the time, when they were in high school, Thomas was just beginning to get sick. He had had his first psychotic break just months before his senior year and by his 1st and finally second hospitalization when he was diagnosed "acute paranoid schizophrenia" he was in full-blown psychosis and fighting the demon of schizophrenia unmedicated and under pressure with senior year activities. He, too, was a bit of a time bomb so the two boys together scared me a great deal. Together they had cooked up this seriously tweaked version of what our government should look like and it wasn't one that had anything good about it.

Needless to say, despite Cole's past proclivities, he was kind to Thomas and that helped to some degree now. Having him at our house the other day seemed fine to me because the boys hadn't hung out in a long time and with Thomas's bedroom door open, I was able to wander by his room and see what they were watching and playing. I wasn't concerned.

Cole stayed about 4 hours and left, saying a polite goodbye to Dan (my husband) and I. Thomas had had fun and since he hadn't hung around with friends in a while, I was glad that Cole had agreed to come over to our house (in fact he had invited himself preferring our house and the peace over his house and his dad that he hates).

All in all it was a good two days in a row. Thomas had initiated both meetings and his friends had returned in kind. Finally Thomas could see that he his capable of initiating meetings with friends without rejection. That is so good.

I haven't seen hide nor hair of the boys since those two days but over all I thought the whole thing was just terrific. I want Thomas to be social, it's a sign of stability, and yet again I got to see that that is indeed what is going on with Thomas.

Stability.

Wednesday, January 21, 2015

The Fog And "Silent Hill"

 
This rather creepy bank of fog enveloped my town yesterday. When Thomas and I left to go talk to his manager about his hours, the lower part of the town where we live was covered but as we travelled up the hill it got better. When we got done with our meeting and headed back down the hill we found ourselves back in this pea soup fog. It was a rather strange phenomena for our area and I'll admit it was a little creepy.

When Thomas and I left to take him to work it had thickened a great deal and enveloped our car and we couldn't see 50 feet in front of us--if that. As we pulled out of the driveway Thomas said that "people would say this is like 'Silent Hill'". Now, my knowledge of "Silent Hill" is that it is a creepy video game where this place is covered in a big thick fog and you are hunted by something scary. Thomas could probably tell you a lot more about it but I didn't ask him. I didn't ask because I could tell he was already freaked out and I thought, in telling the story, that he would freak himself out even more. I don't need that. After Thomas believing that Slender Man was hunting him for over a year, I didn't want him to attach to the whole theme of Silent Hill and begin another psychosis fueled trend.

I really hate these video games. I also hate the videos on YouTube designed to scare and more than anything I hate that I can't control what Thomas watches. Having him sit alone in his room with these scary things is much like holding him down while he is tortured. He doesn't seem to have the filters or the control to stop himself from watching this stuff thereby adding this nonsense to his already fragile mind, wide open to suggestion. The scarier or more professionally created to look like a real place or situation the video is, the more I worry about him. I worry about him, even in this more stable state but I have to say, in some ways stability had it's concerns too.

I know you may probably think I'm crazy for saying this but I believe that Thomas is more susceptible to negativity (in videos for example) BECAUSE he is stable. I think what happens is that he comes upon one of these videos and he believes he feels strong enough to watch it only after a while the psychosis/schizophrenia switch begins to get toggled with and may even flip like it did the other day with that other video. I think stability, to some degree for a person living with schizophrenia, gives a false sense of control over what they feel they can take in to their minds. I can't tell you how many times, myself, with my bipolar, that I have walked into situations thinking I was strong enough to handle it and then came out the other side a wreck. Perhaps Thomas and I share the same mechanism that is weakened in the brain by stability. One might think of it a bit like a tightrope. Sure, we can walk it, for a while now we've been able to, but then the 5th or 10th time we go out on it a gust of wind blows by and suddenly we find ourselves in the net below the rope line wondering what the heck just happened.

I think Thomas, with his shiny new stability, walks that same tightrope, his having the need to watch scary videos and like last night in the thick, oppressive fog, he teeters on that rope trying not to fall.

In the end I have no control. I am acutely aware of how little control I have over ANYTHING really. What I AM left with is an ability to find the fun in the fog, the beauty of it's droplets in the headlights ahead and with any other positive distraction I can come up with to take his mind off of this Silent Hill character. It is a never ending game of cat and mouse with this illness. It weasels its way in wherever it can find a weak spot and I imagine it rubbing it's hands together diabolically and chuckling to itself saying:

"I got in, now let me see what damage I can do next."

Tuesday, January 20, 2015

The Deafening Silence

As I sat in my living room yesterday going through my social media I stopped for a minute because it was so quiet. It wasn't that I couldn't hear Thomas's YouTube videos playing in his room or any other ambient noise but what I heard loudest of all was the ringing in my ears. I get this from time to time with one of my medications but yesterday is was deafening. I call this post "The Deafening Silence" because it was quiet enough in my house to be able to focus in on that ringing.

The reason for the silence was twofold.

First of all, I was left yesterday with the news of the loss of Laura Pogliano's son Zac. I think it's probably fair to say that many of you with loved ones with schizophrenia were touched by the horror of yesterday's post and many of you probably immediately went to your loved ones and expressed some kind of love for them while holding a wish inside that they would remain safe in their lives. I know I was reeling from the news and 3 or 4 times hugged Thomas with a ferocity that I haven't expressed in a while. With him in my arms I imagined a life without him and a time where I might find him passed away from any number of circumstances. I choked back tears on his shoulder as I prayed that he would be okay forever. Zac's death was far too close to home for me in so many ways and I feel his loss and most of all I feel the loss that Laura must feel. Granted the death I had to draw from was the sudden loss of my dad just under a year ago and the pain of that was, at the time, unbearable and even now consumes the molecules in my being with grief for the life I now live without my dad. Losing Thomas would hurt even more. As I sat there in my living room and willed the internal ringing in my ears to go away, I found myself shedding tears for Laura, for Zac, for me, for Thomas and for all of you who have lost loved ones to death or to this illness. It is a grief we all share in one form or another.

My afternoon wore on into twilight and I reflected on my day in the silence and I realized part of the silence I heard was Thomas's stability. He hadn't really been out of his room yesterday except for an occasional hug and to get a snack. Other than that he remained in his room happily playing games and watching videos. It hits me pretty strongly that while just the day before, a mom lost her son, and here I was saying a silent prayer to God that my boy was doing okay. His biggest hurdle right now is getting his hours changed at work, something that's not at all easy for him, in fact it's paralyzing, but it's surmountable and with my help he will be able to go to his boss and remind her that she can't work him on Tuesday's and Thursday's because he has standing doctor's appointments. It is his one stipulation for his schedule and one I don't think is unreasonable. Evidently they forgot the rule and scheduled him for tonight but he was unable to get out of the shift so he'll work but he'll call a meeting with his manager to get future Tuesday's and Thursday's off.

I know I was blessed with that silence yesterday. I know that the ringing in my ears meant so much more than it just being a side effect of a medication. It meant that I sat alone in my grief over Laura's loss of her precious Zac and I had time to pray for them over and over and it meant that my Thomas is doing well. Such contrasts they were but both brought a silence that I was left with to reflect on these two things.

I learned from yesterday, a few lessons, and set some thoughts in my head. I will not be pushing Thomas out of the house to live on his own anytime soon. When he's truly ready to leave I will support him but it won't be without my own uneasiness about him living alone and my fear that I will find him dead someday. None of us can stop death, I learned that lesson from the loss of my dad and now with Laura's loss, but I can maybe be there if that time comes. I pray it won't but if there's one thing I have learned in the last year, that is that I cannot control very much in my life, especially when it's a loved ones time to cross over.

I feel like right now there is a lifeline whipping around in the wind and I keep jumping up to get it. Sometimes I do, like yesterday with Thomas and his stability, and sometimes I play an annoying cosmic game of "keep away" with it as people around me lose their loved ones to schizophrenia and as I sometimes lose Thomas to a day or two or a week or months of this illness.

There's no doubt about it, I am blessed right now. I don't take that for granted for one single second. I know how fleeting life is, I know how fleeting stability is and for the life of me I am not going to sit idly by and not pay attention to the good stuff and take that time to breathe a sigh of relief and thank God for my boy, Thomas.

Monday, January 19, 2015

Laura Pogliano And Her Son Zac--May He Rest in Peace



As I sat down to look over my Facebook this morning I discovered the shocking and heartbreaking news that fellow advocate and mom Laura Pogliano lost her son Zac. This tragic death hits so many because we all know of Laura's advocacy work for her son and for schizophrenia. We also know what a wonderful mom she was to Zac, her son living with and now lost to paranoid schizophrenia.


 To Laura, my heart and my prayers are with you and your family right now. You have been an amazing advocate and have touched so many lives. Zac's willingness and ability to speak out about his illness and educate the world will live on in perpetuity in the hearts and minds of so many and both his efforts and yours will not go unnoticed or unappreciated.


 Your story has touched me deeply and I have followed it for awhile now and you and your work have been something that I look up to and hope to emulate through the years. So many of us are out there on the front lines trying to change the stigma around this illness and you have set a phenomenal example for all of us to follow.


 I cannot know fully what you must be feeling right now but I can say that if I lost Thomas, my world would come to an end. I will say constant prayers for Zac's comfortable passage to Heaven and I will do the same for you, saying prayers to give you strength to get through this life altering event.


 Both you and Zac are loved and have many supporters out there and it is all of us who will be here with you during this difficult time. We will all also continue your efforts to educate in the ways that we know how by following your lead and as such Zac's loss will not be in vain.


 I am so sorry Laura.

Saturday, January 17, 2015

Fragile Reality

I sat in Thomas's therapy on Thursday and listened as Dr. K. brought up the possibility of any "schizophrenic thoughts" for Thomas to sort into his "schizophrenic bucket". I jumped on it right away but immediately silenced myself because Thomas began to talk about something he thought might be a schizophrenic thought. As it turned out, his thought was actually a moment of intense anxiety and didn't have any schizophrenic thoughts tied to it. He's still learning how to sort thoughts into the buckets and I think he's still unsure of what an actual schizophrenic thought is. I stand by my opinion that filling these buckets is going to be hard for Thomas, as I imagine it would be for a lot of people with schizophrenia, because I'm not sure he can separate what is a schizophrenic thought and which ones are "normal". He's gone so long with his paranoia and delusional thoughts so they've become the norm. He said it himself once or twice too that he often has thought that other people feel or think the same way. If you believe that to be true then why would you think it needs to go in any bucket at all?

To recap, the buckets are a creation of Dr. K.'s and he very sweetly and kindly searched our town for little buckets to make this exercise a tangible one for Thomas. He labeled one "schizophrenic thoughts" and the other "normal thoughts" and then asked Thomas to sort thoughts that bubble up into one of the two buckets. In each bucket is a 3x5 card and for the schizophrenic thought Thomas is supposed to write the thought on one side and then on the other side of the card write a challenge for the thought. In theory is a WONDERFUL plan but as I said, I'm not so sure that Thomas knows when to put the buckets to use.

So when Thomas stopped telling his story of what he thought was a schizophrenic thought that turned out to be an anxious thought, I was called upon to share my thoughts on what he could have sorted into the buckets this last week. I brought up the instance where he had come out of his room shaking and scared with his voice faltering telling me a story about a video he had just watched. Thomas told the story to Dr. K. about the video and in doing so said that the video had been an hour long. AN HOUR! I say "an hour" with such emphasis because that is a LONG time for him to be glued to something that is scaring him. I thought it had been a little 5 minute thing so in spite of his demeanor when he came out of his room, I felt it was something we could get through together. But an hour? That is not good.

You see, the way he was acting when he came out of his room was reminiscent of his first psychotic break. At that time, he was terrified and he was lost to me, caught up in a fictional place in which a creature called Slender Man existed. For days he was terrified and for days he was isolated to his room, especially at night when he would have to come out of his room into a darkened house. He was so thoroughly convinced that Slender Man was after him that he had completely lost touch with reality. Because he had soaked his brain in nonsense filled videos, he had ended up lost to me and stuck in a place I didn't get him back from for over a year.

When I found out that he had been watching this new video for an hour and had presented to me with the same reaction that he had with Slender Man, I got scared. I pleaded with my eyes to Dr. K. to really take seriously what I was saying when I told him that this whole event was reminiscent of the Slender Man thing. He got it, thank God and he stopped for a moment to think. Then he said,

"Thomas, you have a precious mind. You're different from others because your mind is suggestible and it's probably best you stay away from things like that video."

We all agreed wholeheartedly that that is what is best for him but still I couldn't shake how fragile his reality had become by watching that video. To me, I felt like for all of the ground he has covered lately with becoming stable, that ground was shaky, at best, and I am now very worried about his state of mind. How is this even possible? How can just an hour long video shake Thomas's foundation enough that had he spent more time watching more of these videos the story might have ended with him being hospitalized?

Oh how sneaky this illness is...how it lies in wait, hidden in corners we don't think to check, fooling us into thinking things are stable and we're on the road to remission when in truth it is still there waiting to pounce.

After therapy I realized that I learned a valuable lesson. I had forgotten the Slender Man stuff, relegated it to the back of my mind where all of the dark memories of Thomas's first psychotic break reside. I had moved on, as had Thomas and Dr. K. and we had all become complacent.

So, I write today to remind myself, to remind all of you how fragile the minds of our loved ones are. I write to remind those of you living with schizophrenia how fragile your minds are. There is not a time that we should become complacent, there is not a time when we should put our full faith and trust in stability. Don't give up hope, don't stop loving the stable times, but remember, always, that schizophrenia is there just around the corner and it's hidden in places we don't think to look or that we pass by time and again caught up in a sense that we've got it all under control.

Friday, January 16, 2015

FRIDAY'S WITH TOM--My Sprites



What's up everyone, Tom here and welcome to my blog.

Today I'm talking about sprites. No not the soda and no not the fairy. I'm talking about the video game pixel art. An example of a sprite is what I have pictured above.

The process is simple but very tedious, you change the individual pixels on the character. But you don't just work on one frame. You work on multiple frames of movement. Some people dedicate their time to making very large sprite sheets with tons of movements consisting of mostly attacks, battle stances, and other movements.

The character I have displayed below is my Sonic the Hedgehog custom character based off of me. At the moment he doesn't have any special powers, just some punches, walking animation and a throwing animation. The plan I have for the throwing animation is that he is throwing a tear gas canister. My hope is that people who use my character (with permission!) will use him as a support character. Which is why he is throwing a tear gas canister, it’s a stun move.

Well that's it for today's post, hope you all have a good day, stay beautiful.

(From Melanie: These sprites are something that Thomas gave up on working on for over a year. The fact that they're back shows that he's feeling better. He sits for hours at a time working on these. I had him share this with you because so many of you asked to see his art work and since this is something he's picked back up lately and it's something he loves, I thought it would be appropriate for him to share it with you all.)

Is It Time To Stop?

 
 
Yesterday was Thomas's day with Dr. N., his psychiatrist, and I was really curious to see how it was going to go. Thomas has been doing so well lately that I thought Dr. N. might try again to decrease his meds. Strangely enough a part of me was totally ready for that decision and I decided that I would support that choice if it were to be made. Thomas is only newly stable and perhaps it's not the smartest thing to be messing with his meds but I personally was feeling really good about the changes in Thomas I have seen lately.

As usual Thomas went in first and talked to Dr. N.. I was called in shortly thereafter which surprised me. Dr. N. usually likes to take more time with Thomas but that wasn't the case this time. When I got in there and sat down I found out that Thomas had already filled him in about his heavy depression he had at work the other night but he had omitted (because he forgot) the story about him watching the scary video and coming to me shaking and needing a hug. I told that story to Dr. N. because I felt that it was worth mentioning because I felt like Thomas got far too involved in the video and had crossed a line from an average person watching a video to someone who was caught up in it and losing touch with reality. That whole incident pointed out to me that Thomas is still struggling with reality and as such I felt like it was worth mentioning.

Dr. N. really seemed on his game yesterday and really listened to both of us. He agreed that Thomas seemed to be doing better over all and then surprisingly said that he wasn't going to touch the meds.

I was relieved.

Even though part of me had previously been feeling okay about changing them there, apparently, had been a part of me that was scared to see those changes take place. Dr. N. told us that he felt that Thomas should be SOLIDLY stable for 4-5 months before we make any changes.

Whew. And YAY!!

I had a timeline now. With Thomas doing so well, I feel like we could expect, now, to look forward to 4-5 months of stability before we shake things up a little. Even then, Dr. N. said that he'll try to decrease meds after those months have passed but if Thomas sees ANY negative changes then he's going to put Thomas right back up on the meds. We're not going to mess around. Always in the back of my mind is the fact that untreated psychosis only gets worse and once it's being treated it takes a long time for it to stabilize and if you treat psychosis successfully and then stop the meds and the person becomes psychotic again then it's harder to treat and stabilize it the next time and so on and so forth. So I asked Dr. N. to explain the science behind how meds work in the brain.

He had a very poetic way of looking at it. He said that a psychotic brain is a lot like trees in winter. The dendrites etc. have no "leaves" and the branches are bare. As you begin to treat psychosis and it gets better, the trees begin to look like trees in spring with little leaves and buds on them. Then a healthy brain looks like a healthy tree, strong and covered in leaves. I liked that analogy. I figure Thomas is in the very beginnings of "spring". That thought excites me. I love spring. I love when you can see those little buds on the trees, the flowers are pushing up out of the ground and are barely peeking above the soil.

Spring!

(insert the rush of a warm spring breeze here)

I did also mention how Thomas has heard me calling him lately and Dr. N. sat up and took notice but said we would just keep an eye on it. That's fine with me since me calling Thomas is hardly anything to worry about seriously but it's still an auditory hallucination nonetheless.

Then I said something about how I felt, based on the changes I have seen in Thomas lately, that he has probably been depressed for years. To that Dr. N. said,

"Well then it makes a person wonder if his psychosis has been as a result of (psychotic) depression and not schizophrenia."

This stopped me for a minute. Could he be saying he thinks Thomas doesn't actually have schizophrenia? The thing is, though, I know psychotic depression well. I had been there before during a 2 year stint with heavy, chronic depression. At one point I found myself just this side of being hospitalized and I was paranoid and hearing things. The thing was, though, it took a heck of a lot to get me to that point. A LONG time of chronic, heavy depression.

In the car on the way home Thomas and I talked about his depression. In the end we agreed that he hasn't been "depressed for years" like I had stated. I remember him before he got sick. He was not a depressed kid. I also remember him as he got sick for the first time and he wasn't depressed then either. Schizophrenia had worked its magic just as it should with its garden variety psychotic break and subsequent struggles. So, together, Thomas and I ruled out psychotic depression as a possibility for what he struggles with.

All in all the appointment went well. We drove over to the next town to Thomas's favorite restaurant and he had his bacon cheeseburger. Interestingly, because of a recent tragic multiple homicide in that town, I found myself a bit uncomfortable and a touch paranoid about being in a public place like the restaurant. The shootings in the town had begun in an Arby's and that fact made me feel like it could happen in any fast food restaurant like the one we were in. It was then, though, that the student became the teacher so-to-speak. Thomas picked up on my uncomfortableness and asked me if I was feeling unsafe in the restaurant. It was quite a momentous occasion as I realized my child living with schizophrenia wasn't the least bit concerned nor paranoid about being in a public place in a town that had just seen horrific gun violence and tragedy.

I had to smile. There's no better way to ground myself than to have my previously seriously paranoid son comforting me through a situation that really didn't warrant the kind of feelings I was having.

He's actually, really, doing better!

I love that kid!!

Thursday, January 15, 2015

Is He Reading My Mind?

Coming from me, the above question probably sounds like nothing. However, in the context of this illness, that kind of question is a bit concerning, a delusion if you will. One of the symptoms of schizophrenia is a belief that someone is inserting thoughts in your head or that someone can read your mind. In mine and Thomas's case, it is me that has questions about that right now.

Thomas and I are so linked. We are mom and son. He is literally a piece of me. So knowing that and knowing that my own mom and I have a similar connection makes me wonder about the above question. With my mom and I, I literally just have to think about her, think about wanting to tell her a story and she'll text or call me within seconds of those thoughts. We've always been like this but in the past couple of years as we have grown even closer through taking care of my dad when he was sick and then being there for each other once he died, we have become even closer and these phenomena happen more often. I believe that with Thomas, like I do with my mom, that it's possible he and I are solidifying this kind of connection.

I tell you this because of what happened last night.

I took Thomas to work and then came home and turned on my music very loud on the surround sound throughout my house. I'm fairly certain I was blowing my neighbors out of the neighborhood but I didn't care. In those moments, I just needed to get lost in some music, an outlet for me and my emotions.

I started off by listening to one of my favorite playlists. I know all of the words to the songs and I sing them like I can actually sing them. I often feel like I have a halfway decent voice but last night my voice wasn't cooperating with me. As time passed I found my way to a playlist I made called "Afterlife". It is filled with songs about my dad, about losing my dad and about coping with that loss. It's really one of the most beautiful playlists I own. In listening to it, I lost my voice, literally, and got lost in the music too. I began with the lighthearted songs as I was trying to keep from digging into the sadder ones but within a few songs I was surrounded by the music of the loss of my dad and how much I miss him. I sat in my chair and choked back tears but finally a flood came through and I sat there crying and found myself in the middle of full blown grief all over again. I wiped away tear after tear and looked at pictures of my dad, something that I haven't been able to do for a long time because they make me realize that he's actually gone. I sat there in those moments and felt a great pain and terrible heartbreak. Finally I turned off the music and began to watch TV.

Later that night I went and picked Thomas up from work. He got in the car and immediately I could tell something was wrong. It was so glaring because he's been fine after work for so long and I had grown used to his decent mood after work. Last night was a different story. I asked him how his night had gone and he faltered and finally told me what happened.

In the middle of his shift, he told me, he had been overwhelmed by a horrible depression that "was so strong he almost cried". Thomas doesn't cry. Not very often anyway. In fact his last tears were at the ceremony my family held to spread my dad's ashes back in July. So the fact that he had been moved almost to tears by this depression and I had had the night that I did, I had to wonder, had he been "reading my mind"? Had he picked up on my intense grief and felt it himself? I had to wonder that because he's been connected to me like that a lot lately. Like I told you in an earlier post, he has been calling out for me thinking I have been talking to him only I haven't been. He is hearing me talk to him and I am in the other room not saying a word.

So do we have the same connection that my mom and I have? Is he picking up on me thinking about him and thus thinking he hears me calling him when in fact it is my mind that has wandered to him and how he's doing? Perhaps I, too, am a bit delusional. Perhaps my own bipolar is playing tricks with my mind like it does with his. Or, perhaps, like last night with me, my music and my grief, he is picking up on our connection we share, our molecular mom and son connection.

I can't say for sure but one thing I do know is that we have been closer lately. Between last night and other events that have happened including him "hearing" me call for him, a part of me wants to believe that he truly is a part of me in a way that only some people share with the people close to them.

I don't know for sure but I do know this. In the exact moments that I was lost in my grief over the loss of my dad, across town, inside a big box store, alone stocking the shelves, Thomas felt a terrible sadness too.

In the car, I put my hand on his knee and squeezed it and told him, with tears in my eyes, that I was sorry that he had had to deal with that at work. He's such a sensitive, sweet young man. Regardless of whether or not he was picking up on my own emotions, he had experienced a terrible pain last night and for that, my heart breaks.

Tuesday, January 13, 2015

Distinguishing Reality From Fantasy

It was a rather unassuming day yesterday. Things have quieted down here with Thomas for the most part. He has an appointment with Dr. N. (his psychiatrist) on Thursday and barring any drastic, sudden change, I expect that appointment will go well and earn us the distinction of a once a month appointment instead of a once every other week appointment. Being able to switch to a once a month appointment is such a good thing because I know things are getting better. I, honestly, never would have thought we'd be this far into winter and not be dealing with some serious symptoms on Thomas's part. It's been that way for so long, his suffering every winter, that it's hard to remember a time in his teenage and young adult life that he wasn't struggling. I'll take what I can get, though, and enjoy this time with Thomas and his bright eyes and face unmasked from the look of depression, apathy and all other negative symptoms.

Something happened yesterday, however, that broke my heart. For starters he's been in his room constantly again but this time he has kept his door to his room open every day most of the day. I think it's partly because he's become so close to our dog Cookie and she spends a lot of time with him in his room and even "asks" him for dinner and walks which she previously only did with me. Having her around him has been wonderful therapy for him and I hope that even when he gets sick again he will want her with him in his room. Even Cookie couldn't have helped him yesterday though.

He came out of his room with these wide eyes yesterday and white as a sheet and shaking. As he begun to talk I could hear those trembles in his voice too and I immediately got worried because he's only like that when he's stressed or having a psychotic break. He began to tell me about this video he just watched. He said it was AWFUL. The story was about 3 people who had been imprisoned during the end of the world and the main character stood by as one of his cell mates committed suicide in one awful way and then the other cell mate soon followed by doing something similar thus leaving the main character alone in the cell during the worst of the end of the world. I could see that Thomas identified with the main character and as he finished telling me the story I could see he was so far entrenched in the story that he couldn't tell reality from the
"fantasy" of the video. He begged me for a hug and I had already jumped to my feet when he appeared beside me shaking and wanting to tell me about what happened in the video so I reached out to him quickly and gave him a hug. I held him so tight wishing that the strength of my hug could stop his shaking. It didn't work. So I said to him,

"Hey kiddo, you need to stop watching videos like that. Perhaps from now on pick something more light hearted and funny to watch and stay away from things that scare you or upset you."

He told me he had a ton of lighthearted videos and that he'd go watch them now. I hated watching him walk away still terrified but I hoped that he'd find something to lift his mood and bring him back to reality.

When I checked in on him later and was better, thank God, but the whole incident brought back a time in his life when he was younger where he couldn't distinguish television shows from reality. I remember countless times when we would be watching something that to you or I would be easy to discern that it wasn't real and either he'd talk to me about it as if it was really happening to him or he would ask a barrage of questions about it as if he was trying to make sense of what he was watching. This kind of thing was a hallmark of the beginnings of his illness in those days. Whenever it would happen I'd always get an uneasy feeling but I didn't know what it meant for him or how to help him. Telling him it wasn't real didn't convince him so I always just did what I could to comfort him.

Yesterday's event did make me wonder. Where else is he lost? He does watch A LOT of videos. In fact he spends his entire day, for the most part, on YouTube so even if he's watching funny things, does he get lost inside of them too even though they're funny? I mean, how much of his time is spent believing that somehow he's a part of what he's watching. Lately he's been obsessed with a particular channel about a guy who lives in Alaska and what he does for his videos is take him and his girlfriend all over Alaska doing fun things like skipping rocks on a frozen lake or lowering a camera through a hole cut in the ice. They're pretty good videos to watch, I've screen a few myself, however I wonder if Thomas feels like this guy is his friend and even more so lately I wonder if he's becoming an obsessed fan of this guy. Thomas talks a lot of moving to Alaska and I have to wonder if he were to do it, would he end up in this guy's back yard? Between his inability to separate reality from fantasy, his obsessive watching of this guy's channel and then the quality of a lot of people living with schizophrenia who develop an unrequited obsession with a star, I wonder if he's headed that direction. I really can't say for sure but for as much as he is watching this guy lately, it does make me wonder.

So, yesterday was a bit of an eye opener for me. I do get complacent now that he's generally doing better and I find myself unprepared for moments like the one he had yesterday. I'd really hate to see him get lost in a fantasy world where he's hard to retrieve from it. One of his psychotic breaks came from a situation like this so I want to be sure that never happens again. I can't monitor what he watches though so all I'm left with is a prayer here and there asking for him to be watched over as he travels across YouTube and all of its nonsense.

Monday, January 12, 2015

The Dead Of Winter--A poem about the mentally ill and homeless

How can this be?
who is to blame?
A human who suffers
Is never the same.

They're dumped from the hospital...
and shelters and warmth
to wander the streets
in clothes tattered and torn.

So many pass by
closing eyes to the truth
they don't want to help
They haven't a clue.

A man with schizophrenia
a woman with bipolar
both wander the streets
alone with no cover.

The cold snow falls down
and so does the rain
they're soaked to the bone
their bodies, in pain.

Their brains tell them truths
no one can discount
they fight demons so cruel
speaking voices, so loud.

They're lost in their mind
and lost on the street
they wander past others
no shoes on their feet.

I see them around
in stories and life
seeking shelter from cold
behind boxes they hide.

What's wrong with society?
Why do they ignore?
These people are humans
they deserve so much more.

Whether sick from the bottle
or mentally ill, lost inside
they all deserve love
compassion and fight.

The travesty is
society walks away
while HUMANS, they suffer
Huge prices they pay.

This must come to a stop
I call to you today
Reach out to the homeless
do not turn away.

The homeless, the lost
can't help themselves back
without our helping hand
And this is a fact.

Don't let their illness
their schizophrenia, their bipolar
deter you from caring
they deserve so much more.

It is in our hands
it's "we" with the power
to make all the changes
this is our hour.

Promise yourself
and your fellow man
to give them a life
they deserve in the end.

--by Melanie Jimenez

Saturday, January 10, 2015

Somatic Hallucination?

Something came up in Thomas's therapy this week that got me to thinking. First of all I want to say that Thomas has been doing pretty decently lately. Again I have to credit the Cymbalta (an antidepressant) for the changes I have seen in Thomas. He's dealing with other symptoms but the depression seems to have lifted. I am so upset that we hadn't been able to catch this sooner because I think he's been truly depressed for years. That is no way to live. But in therapy, talk of the "demon" inside of Thomas came up again.

One of the greatest things that has changed lately is that Thomas no longer feels like he has a "demon" or something evil occupying him. I'm not sure what changed where that was concerned other than to think that between me and Dr. K., we convinced him that he didn't have something evil inside of him. For being a delusion that's been around a while, it was pretty easy to eradicate it. I am so happy about that because after learning he felt like that I felt horrible that he actually walked around in his life thinking that to be true.

What accompanied that belief though was a physical sensation that something is inside of him trying to push out of him. He now refers to it as "pressure" but he's had it a long time and it is always with him. Not only that but on a scale of 1 to 10 (10 being the strongest it has ever felt) he falls at a 5 on a constant basis. That's high for him and it would be high for anyone having to live with that feeling 24/7. The thing is, now that he doesn't associate it with the belief that there is a demon inside of him trying to push out of him, he is just left with this incessant pressure. My question to you and my hypothesis is,

Would this be considered, or could this be a somatic hallucination?

He says he doesn't have trouble breathing, he reports no cardiac symptoms, he just feels this pressure and it makes him crazy. I don't know what to make of it exactly but I would like for it to be gone from his life.

So, I open this up for all of you to take a guess at. Perhaps one of my page members with schizophrenia has felt something similar. Perhaps someone has happened upon some information about this kind of thing. I don't know. But I'm hoping you guys will weigh in on this one. I just want Thomas not to have to feel this feeling anymore.

Thanks everyone!

Friday, January 09, 2015

Friday's With Tom--Challenging myself and advice for caregivers


Hi guys, Tom here, and welcome to my blog.

Believe it or not, there are times when I have a hard time with anxiety and intrusive thoughts. I usually have anxiety around the time I have to go to work. So I had written on a 3x5 card phrases I can say to myself. They are: “I've never been late to work, my anxiety always goes away, I am stronger than my anxiety.” These phrases help a lot with my anxiety so I recite them every time I get ready for work.

With intrusive thoughts however, I challenge the thought, for example; I have a thought that someone is going to steal my wallet from my back pocket during work. Well I say to myself, “I never been pick-pocketed and I won't in this small store.”

Now this next thing goes out to the caregivers of those that have schizophrenia, if they are willing to talk, have your loved one explain something that he/she has experienced and if it’s something like hearing voices or seeing something, explain to them how it is not real and help them learn to distinguish between real thoughts and what aren't real.

Well that's it for today, hope you guys enjoyed, as always; stay beautiful.

Thursday, January 08, 2015

He Hears Me Calling



It has begun again. I'm not sure how it starts or why it's me but I am now being checked in with a lot.

"What mom?"

"Did you say something to me mom?"

Now, I don't know what's going on but I think the voices are back, or rather, my voice is back. When he began hearing voices before, a long time ago, I got the same thing. He'll be in his room and I'll be doing housework or reading or something and he'll ask me what I said. So, what is he hearing?

In the scheme of things, hearing MY voice talking to him is seemingly far down the list of things to worry about since I guess he believes I am just (perhaps) calling him into the kitchen for a snack or asking him a question. It's not like there is a command voice instructing him to do bad things or a voice that torments him with insults and cruel observations about himself or his world. It is just me, his safe zone, his mom who loves him. The thing is, though, I know it's still a voice that he's hearing and that voice is coming back.

It came to a point the other day where I was finding it hard to tell him that it wasn't me calling out for him. He's so expectant of an answer, he worries about me and he wants to be sure he responds to me. Constantly telling him that it's not me calling him is starting to break my heart. I haven't exactly sat down and had a conversation with him about it either. Something stops me from doing that. I don't
think any one of us wants to say,

"You're hearing voices again. It's not me talking to you."

It's certainly not something I want to say right now. Perhaps because it feels like a defeat in some ways. With him doing so well emotionally, it just seems cruel to bring up that his schizophrenia symptoms are coming back. Besides, what's the harm in him thinking he just hears me talking to him? I don't know. I'm torn. When he asks me,

"What did you say mom?"

I tell him that I didn't say anything but that's all the further I'll take it. He seemed unfazed by my response and just goes back to what he was doing but I find myself just standing there thinking to myself,

"Oh no, not again."

I guess in a way I am lucky as his mom and caregiver that what summons him is me. I just wish nobody was summoning him and that this isn't happening. Dr. K. has said in the past about of this type of voice, that it could be worse.

Yes.

Worse.

And yet...in a way...it's worse because that means something isn't working and of course I'll call out those ever-annoying meds. I was talking to my mom yesterday about the meds and I likened it to a bacterial infection and antibiotics.

First you get this nasty infection and you go to the doctor for antibiotics and it begins to treat the infection and you begin to feel better but towards the end of the course of antibiotics, the bacteria mutates and suddenly your antibiotics aren't working and they have to try something new to combat the mutated bacteria.

Thomas...has a bacterial infection...and it's name is schizophrenia. And those antibiotics, those antipsychotics, aren't doing their job because for whatever mystical reason, Thomas is showing signs of psychosis again. Psychosis is at the top of the list of the most insidious "diseases". It's pernicious and I really hate it's little black "molecules" that mutate and occupy a different part of his brain previously untouched by psychosis or a part that we thought we had healed. It's a nasty little bugger that has a longer staying power than anything I know and I swear I can hear it laughing a wicked laugh when Thomas calls out for me from another room asking me what I just said to him. Oh what I would give for an industrial fly swatter to knock it to kingdom come whenever it shows its nasty self in this house.

That is, however, not possible. There is no fly swatter and there is no way to stop its mutation. Sadly we all have to stand aside and let psychosis run roughshod through Thomas's brain and through our life.

Today is therapy day. I suppose the time has come for me to have a serious conversation with Thomas about the voice. I think it's time we bring it up to Dr. K. and see what he thinks.

I hate this. He was/is doing so good. Emotionally he's doing really good and now this.

Tuesday, January 06, 2015

Thomas's World News


It was brought to my attention yesterday by a blog member that lives in the next town over from me that perhaps the newly cloudy weather here might have to do with Thomas's down mood. I asked him about it and he said "maybe" that could be it. He's just seems to be kind of lost. He did work last night and stayed his entire shift so that's great! He has a new manager at work that he loves so it helps to have him around. The manager is very complimentary of Thomas's work and I think that feedback makes all the difference for him.

As for his "energy", restless feeling lately, I posted an article yesterday about akathisia and after reading it I have to wonder if that is what Thomas is dealing with. The article did say that it could be a sign of psychosis also which makes me wonder a little bit. It also said that oftentimes it is under reported and that people just live with it so no one knows that they're struggling. I know Thomas does report it but I still wonder about the psychosis element.

Thomas follows many news agencies on Twitter and appears to rely on them for information about the world. I often worry because he follows news agencies that I think don't report the news accurately. Once such outlet always has nasty things to say about America and Thomas sometimes seems to take that as gospel, often coming to me and telling me what they said. I always ask him what OUR news reports and if he listens to them at all and he always seems to shrug my question off which makes me think he puts more credence in these foreign news services.

Then yesterday he called me in to listen to him read me a tweet from the BBC. Now, I have no problems with the BBC at all, in fact it's a news source I trust but what they tweeted was the "CNN already has coverage or a story or something ready for the apocalypse." Whether or not that's true, and I really seriously have to wonder if it is, the fact that he shared that particular tweet with me concerned me. With all of his talk, now, about Revelations from the Bible, it worries me that he's attached to these sorts of stories now. Interestingly what's different about him worrying about the apocalypse now as opposed to 2 years ago is that now he almost seems excited about it whereas years ago he was afraid of dying. The excitement concerns me because that particular event doesn't seem to me to be something to be excited about. Perhaps that's just me. Maybe, now, he's feeling like he'd survive it, that he would be one of the chosen ones to either go to heaven or survive the apocalypse but I can't say for sure. If I let my brain wander into his world I would say that being excited about it meant, somehow, that the end of the world would bode well for me. Who's to say though. It's not exactly a conversation I want to have with him right now because I'm not on board with encouraging this new interest at all. If I felt that he was going to read the Bible and turn to other reputable sources for his information if he begins to write about this, I would feel better but his delusional mind doesn't usually do that. He seems to always pick the most outrageous point in history or historical figure to follow so I don't see how that's going to change any with this new interest in the apocalypse. I'll keep an eye on him though and I have already asked him if he'll let me read his stories he writes and he agreed to let me do that so at least I'll get to keep tabs on his thinking.

So, this whole report from the BBC about CNN and the apocalypse was a bit disconcerting for me. I really wish he'd follow people on Twitter that are, perhaps, a little less controversial along with all of the news agencies. In a perfect world he would be in college taking classes that cover many areas of study where he would be forced, in a way, to learn in a more well-rounded way. Perhaps someday he'll be well enough to do that. We'll see.

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