Yesterday, my husband worked til pretty late in the evening. When he came home he brought the kids some cookies and treats from the office. We were all in the kitchen together - the kids were checking out the goodies.... I asked my husband if everything was working (meaning at the office) and Zack answered me. "Everything is working fine." I guess he thought I was asking him about the Saphris... which doesn't seem to be working so "fine" anyway. I wasn't looking at him or speaking to him when I asked the question.
After the kids left the room, my husband said to me, "I think Zack is getting sicker." Sicker? I know he's not as well as he was back in January. Months of bad choices have taken their toll on his mind. And his isolation in his room isn't a good thing for this disease, either. But it's hard to say if he's "sicker"....I have seen a few brief glimpses of who he used to be over the past few months. Really brief. I'm just kind of thinking maybe this Saphris isn't for him..... tired, delirious and drowsy can work against somebody. Zack is at the half way point on the samples this morning. I am not convinced this is the med for him.... I guess I'll wait a few more days and see if there is a miracle hiding in the disgusting white pills. I haven't heard him talking to himself in the past two days....but I have still seen him wear odd facial expressions - like he is listening to something only he can hear...at least the expressions are smiley..not scared. But I was also thinking about my husband - "Wow...you've seen Zack for 5 whole minutes today and you want to go to the negative already...."... I am so sick of negativity....I am filled with it...and fighting against it.
All weekend Zack did nothing. He was bored and he said so. Even if he hates going to this group, nobody does any talking, and it's an inconvenience to get up and ready for - at least he has somewhere to spend five hours of each day. He had such long slow lonely days on Saturday and Sunday with nowhere to go and nobody to speak to but us...and he avoids us. He has thrown away all friendships. He has no interest in making any new friends or spending time with people. He prefers the isolation - but then he's bored. He cannot focus on anything other than computer games. He can't read or watch TV. I don't understand it but it is what it is. He gets up, paces, wanders, walks outside, snaps..sleeps....the constant hand washing has stopped. I just realized that.... but the showering hasn't. I think the showering may now just be a time waster. Like the smoking. Something to do to make the long lonely hours pass.
This morning again, he said he "feels sick"...ugh. I am sick. I am sick of this nonsense. I feel guilt when he is bored and directionless, roaming the house aimlessly...I can not have that guilt shoved in my face every day. He is going to his group. He used to be such a funny witty kid....he had all kinds of interesting friends....he had goals for his future - he had a smart sense of humor and wanted to get into radio. He would have been awesome. Now he's so bland and lacks personality, fun and friends. Isolation is part of the disease - but it's damaging to let it exist. Sharing company with nobody and nothing except a mentally ill mind cannot be good.
I have isolated myself from my friends due to this disease. I've been thinking about that lately and missing them...but not enough.... Shame and embarrassment are the companions of mental illness. I have told a couple of my dearest friends here what's going on. It's not something fun to share....it's not anything comfortable to talk about.... not a lot of laughs involved while struggling with mental illness. Schizophrenia has such creepy connotations, too. People immediately think mass murderer or serial killer... and that's not the truth. I don't want my friends to be afraid of my son. I only told the ones that have known him his whole life...the ones that knew him when he was him. They were shocked and heartbroken, and then wonderful. I've been the bad friend.... choosing to be distant.
I think I am depressed. I don't want meds though... I just want this gloom to pass. I have to work things out in my mind - and I know I can. I'll get through this dark tunnel, the mess in my mind will be settled, done and over, and I'll be stronger once I come out on the other side. Time is what I need. I think grief and loss are important emotions to feel and live through. I don't want to cheat myself out of the feelings and just medicate myself out of life. But I do kind of miss my friends... having people over, bbqs, pool parties, fun and laughs. The fun is gone right now - I long for it - but I don't feel like having fun...even though I wish for it. Strange.
But I have changed and part of me is not so "me". I was thinking of a way to describe it because it's only a part of me that's not so me... I still have a part that can be fun and laugh...but it's less of me...buried deep ..doesn't show itself so easily. I'd say I'm like a Venn diagram now.... A dark black circle overlapping a bright sunny white one, gray where they overlap...
THIS part of me - where I have to face this disease - is in the black. Most of me is there right now. When I'm with Lucy and Jojo I can move into the gray and sometimes even into the white - but it's an effort... I don't want their young happy lives to be tainted by garbage and sadness. The white circle is where I used to be a majority of the time..sometimes slipping into the gray. I was there only a short few months ago when things were looking more on the positive side. That's when Jojo told me that I am "always happy". I think that is the best compliment I have ever received. Back then I had happiness and hope in my life holding me above the murky water. That's gone now and I'm sinking.
Looking back on those recent happy months, maybe that precious happiness was just a distraction, keeping me from focusing on the dark mess that I wanted so much to avoid. Now I'm stuck...and alone. No choice but to stare this dark mess down, focus on it, and fix it. Then I'll get that happiness and hope back. I have confidence that I will.. all will be well. I felt this same type of loss and grief in 2003 when Lucy was diagnosed with Retinitis Pigmentosa... losing her sight. At that time, I figured the future held no happiness for me. I was so filled with sorrow...but as time passed and life worked it's magic, happiness found it's way back to me... and it will again.
To Be Continued....
I am just crazy about these two girls of mine... I look at this and smile.
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