Wednesday, July 29, 2015

Where Have We All Disappeared To?

It's been a while since I've written and many of you have asked where I am. It is so hard to explain exactly where that place is that I disappeared to but one thing's for sure, I'm ensconced in some kind of little bubble where the world, my world, has grown very small and very distant from the outside world. I made some changes in my own medications, like I do every summer for some unknown reason, and that could be part of the disappearance. I question myself every day as I exist in this world because I am dead tired, and cycling through different emotions. I can't say that I am necessarily depressed but it appears that I am to the outside world.

I think about you all so often and I wonder how you are doing and I invite you, in the comments section of this post, to tell me how you are doing and how your loved ones are doing. Without my daily writing, I miss your stories about your life and I wonder how you are. I'd really love it, if you don't mind doing so, sharing your lives with me.

As for Thomas, I can say that he's doing okay when it comes to the positive symptoms of schizophrenia. I don't really see any signs of delusions and I know pretty much for sure that there are no audio hallucinations going on. He spends, as usual, most of his day in front of his computer watching movies and YouTube only to emerge from time to time for a hug or to ask for a snack. I have tried to give him more independence by pulling away my constant, probably over-protective, analysis of all things Thomas. He is now handling filling his own medication case and seems to be doing really good with that. I have watched his pill case closely, though, to see if he's forgetting to take his meds and he's not. He seems to have a good handle on it.

I think the most stark thing about Thomas's condition is that he continues to gain weight. He came to me the other day and told me that the jeans that we just bought him not too long ago in a bigger size are starting to not fit him. This came as a small shock to me because it wasn't that long ago that we bought the bigger size. All of his t-shirts that he's worn for years and loves now no longer cover his stomach and he's constantly pulling them down to cover himself up. This is very hard for me to witness as he gains the weight because I feel like I'm watching him get physically sicker as he seems to be on a crash course for "metabolic syndrome" where he could develop diabetes and a whole host of other issues. He still comes to me to ask for a snack, as if he's a young kid needing permission from his mom and I am trying so hard to help him make healthier choices but the fact of the matter is, he is not a little kid so he's going to eat whatever he wants in the end. We have had many talks about how his medication tricks him into thinking that he's hungrier than he is and I've even gone so far as to asked him,

"Do you think you'll actually die from hunger if you don't wait the hour until dinner is served?"

His answer usually is a "no" but he doesn't sound convinced. I'm not sure how to convince him to realize that he'll be okay without a snack and won't actually die so I often just acquiesce and mentally thrown my hands in the air and mostly just pray that someday I'll get through to him. I tell him he needs to exercise and I encourage him to use the treadmill downstairs for just 20 minutes a day but he remains stuck to his computer chair in his room in front of a screen. I don't know if this is something I should take a more active role in but I'd like to see him want to take care of himself.

He's come to me again lately asking me if the marks on his arms are stretch marks and those seem to be adding up also. When he walks from his room to the bathroom without a shirt on, those dark pink marks riddling his arms scream at me and break my heart. When I was pregnant I got stretch marks and I hated every single one that appeared and I have been hoping that the same thing will happen to Thomas, that he'll look at them and start to hate them and want to do something about them. As is always the case, or seems to be, he is so detached from his body and even his mind, and he seems to accept his fate as exactly what it is. This is one of the hallmarks of his illness in my eyes, this dead-eyes detachment from the real world. I don't know how to ignite the light behind his eyes.

As time marches on and he seems to disappear from me, I have tried to come to accept, once again that this is his fate. Without the positive symptoms, I fool myself into believing that schizophrenia has left our lives but the reminders of it still pop up, now in the form of this ever-present weight gain and continued detachment.

I suppose the truth is, as I have detached from my own life outside of myself, I have thus detached from Thomas's life also. That's not to say that I don't engage with him but I've quit being much like a helicopter, always hovering, always analyzing each movement and word. In a way, I wonder if I've done this as a way to protect myself from facing the truth that surrounds my son and the life he lives not to mention the life that the family lives as a result. As the panic around the severity of positive symptoms wanes, we have all fallen into this abyss of life where Thomas slowly morphs into a stranger, I disappear from my life and his and Dan just accepts the fate that has befallen him as husband and father. We've become a family, fortified in our home, going through the motions of life.

So, the truth of the matter is, as I disappear into this weird bubble that has become my life, my boy disappears into his own bubble and Dan resigns himself to this seemingly unfair new way of life. He doesn't complain, thank God, in fact, for me, he seems to try to love me more, I think in an attempt to love me out of my bubble. He, too, has distanced himself from Thomas but voices to me from time to time that he's unhappy with the way things are with Thomas. He has a right to feel the way he does.

We all do.

But it's sad what has become of all of us. In a way we are strangers in in this landscape that is our little home in a little town in a world full of people resigned to similar fates.

What happened?

Where did it all go awry?

I don't know...

One thing's for sure, the longer we stay lost and isolated, the more we will lose of ourselves, all of us.

Wednesday, July 08, 2015

Taking A New Risk

Hello everyone!

It has been an interesting couple of weeks being away from my blog. It's been a roller coaster as I have tried to sort out my feelings and my future where the blog is concerned. I have wondered a few times if I'm depressed and that is what's keeping me away but that just doesn't seem to be the case in the rest of my life. I have gone back and forth with emotions and thoughts surrounding the blog and what I keep coming back to is that I love this blog, I love you guys, I love the work I have done up to the point at which I took a break and I often miss my mission. I know that there aren't a lot of sites out there like mine (if any) and I feel like I've got something here that needs to be loved and maintained. Apart from that, I have had all of you in my life and in Thomas's life and I know that our continuing story matters to all of you. I pull no punches when it comes to the truth about our lives and I think that is what draws people to my blog.

I am writing today to say all of that and to give you a bit of an update on things around here. Life is pretty "middle of the road" here without any hiccups so thankfully for us, there is some down time to soak in a relatively normal life. Things are taking a little turn, though, and that is what I wanted to tell you about.

Yesterday Thomas had his meds appointment and I, once again, fully intended to stay out of the whole thing. I'm very much wanting Thomas to find his own footing where his mental health care is concerned and that includes his all-important meds.

As usual he went in and talked to Dr. N. first, without me. It wasn't long before I was called back too. I went in and sat down and basically said my peace which consisted of:

"I think Thomas is doing pretty good right now!"

That's my stock answer right now because I'm trying not to over analyze the things I see happening in Thomas. I have to say, there are things that concern me but I'm trying to keep my newly acquired distance and just keep an eye on them without pummeling Thomas with questions. A part of me wonders if I'm watching him take a step backwards and I'm just watching it happen and not being responsible and heading things off at the pass. A bigger part of me tells me to leave it alone for now, though.

So, we talked about the things Thomas feels have been "wrong" with him and he complained that his memory, the lack of it, is upsetting him. Of course, the answer was to decrease meds and see what happens, see if his memory improves. That always seems to be the answer:

"Let's decrease the meds and see what happens!"

I'm trying to get right with that.

I asked Thomas what he wanted to do and he chose to decrease his Latuda, opting to take out the morning dose of it for a while. It's not a big dose of the med so I'm thinking we won't see any scary, schizophrenia related issues but we just never know. Every time we've decreased meds in the last couple of years, the symptoms have increased. Hopefully this time will be different. We'll take this risk, or rather Thomas is going to take the risk, and we'll see what happens. I made him promise me that he'll tell me if his paranoia increases or something else changes. I don't hold out hope he'll report anything to me as it has always worked in the past that I have to directly ask him about it or find a round about way of figuring it out. As part of my distancing myself for both of our sake's, I'm going to let things go for now.

Apart from that, I have decided to decrease my own meds.  I do this every summer. I get to feeling pretty decent and I opt to go off of my antipsychotic and then by late Fall, I'm back on them. This seems to be something I just have to do. I think my hope is that

"This time it'll be different, this time I won't get sick again."

But that's never been the case. I'm such a proponent of Thomas staying on his meds along with everyone with a serious mental illness, like schizophrenia, staying on their meds but somehow I think I'm exempt from that. I suppose I'm not the brightest bulb in the box when it comes to my own mental health but this is something I just have to do.

So, together, Thomas and I are going to take a risk with our mental health and see if we can yield some positive results. I am most wary of what might happen to him because it takes time to retrieve him from psychosis but he's made this decision on his own and Lord knows he knows what his life is like when his meds aren't right so he's going to have to then decide what to do if things get bad. He craves independence and this is one of the ways he will get some. When he's on his own, I won't be there to police his meds and he's going to have to learn to listen to his mind and make good decisions about his mental health. Truth be told, I'll never let him fall.

Not ever.

But I have to let him try this change in his meds and learn what the consequences are (if there are any) of doing that.

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