October 2016

Yeah, I know, it's been ages since I bothered posting. The meds really helped me through a rough time, but the truth is I didn't have the energy to DO anything. So I went off them at 6 months, and things have been okay. I don't mean HALLELUJAH I AM CURED perfect or anything, but okay. I'm still mildly positive symptomatic and moderately negative symptomatic, if I'm being honest, but I'm functioning and happy most of the time.

I'm posting more because I've been noticing things, and feeling things lately that I wasn't before. I'm feeling super burnt out by being inundated with "relate able" anxiety and depression posts lately. I must see 20 (at least) each day posted on Facebook, shared each time by multiple friends. I'm glad they feel safe enough to talk so openly about things, and I can relate to them too, to a certain extent, but in the end I wind up feeling detached and othered. My issues and experiences are just different, at their root, so these things are ultimately not "for me", I guess.

But it has had the effect of making me look inward. I'm starting to recognize my natural coping mechanisms, and how they might come off to others. I am constantly on my phone (this is a normal thing for loads of people, I know), and I know that there is a school of thought that finds this rude. I do this to keep my mind occupied. I need to keep a certain level of focus on something going on quite a lot of the time. Time alone with my thoughts can almost feel dangerous. It is far easier to slip into delusional thinking than it is to claw my way back out again, once I'm in it. So I unconsciously (mostly) am constantly finding ways to do that.

Another thing I've noticed is how much socializing actually tires me out. There is a small circle of people I feel comfortable enough with that this doesn't happen, but anyone outside that circle is a completely different matter. Meeting a person outside the circle for lunch means I will have zero desire to interact with people for days or more. I'm withdrawing on line as well. Leaving groups where I feel overwhelmed by the sheer amount of people/emotions. It's hard to offer up an explanation to people for this. I don't really have one, it just feels like something I need to do at the moment, and I trust my instincts more than I trust my mind.

*insert witty title*

    Yes, yes, I went silent for a bit. I'm very unmotivated at the moment, and it's seeping through everywhere. My 2 week trial of my new med (Quetiapine) is almost over, so I'm once again spending my mornings desperately trying to get through to my doctor's surgery to get an appointment. I'm feeling a bit optimistic about this drug. I don't feel a complete zombie on it, and it certainly helps with the anxiety a bit. I'm on a super low dose at the moment, though, (lower than any dose used to treat anything) so it's not exactly doing the job yet. But it's better than it was, so I guess I'm hopeful that an actual dose will get me somewhere.
     I find myself torn between a desire to run from my delusions and an almost pathological desire to examine and understand them. My head is full of white noise. When the voices are quiet, they touch me. And again I'm torn between wanting to know why and wanting to just not feel things that aren't there. There's a dimness in people's eyes when they look at me, that I interpret as judgement. As if they think I'm making this all up. That I could make this stop if I just tried harder. 
     I worry most, still, about Jim worrying. I feel like he's waiting for me to be who I was, like he can't see that I am, already. I have to keep reminding myself that I don't actually know what it is he's thinking and feeling. My head feels heavy with the burden of reminding myself of what I know to be true. I have to step into the whirlwind of static and list everything I know just to pull myself out, like hitting a reset button.
     
I think this probably reads worse to the layperson than it actually is.

     I can do it. Not only am I capable of pulling myself back into reality, but I remember to do it quite often. That's huge. I mean, that's everything, basically. 

     And while I'm completely unmotivated to *actually* get anything done, I have a ton of ideas for things I want to do. I've been looking up name meanings, as I want to write a story. I'm preparing to take up crocheting (again). I'm reading a fantastic novel, and I've got my learn to speak Dothraki book and cd ready to start. I'm also desperate to top up my art supplies and start painting again. And I've got a new tattoo in the works. So loads to do, if I can just push myself to start.
     Also, I managed not to put back on tons of weight over Christmas. I did gain back a little over a lb, but that still has me 3 lbs from my goal weight. I'm trying a ketogenic diet, as there has been some evidence that it can help with managing symptoms of schizophrenia.
     That is where I'm at, I guess. Slight improvement, still lots of work to do.

Swings and Roundabouts

Sleep paralysis has returned. I mean, they never really stopped, but they were short and panic attack-less and just generally less intense. So that's... fun. Or the other thing. Vile. I can't even hide in sleep now. 
     In other news, I've got my initial assessment in just 2 days. So at least I don't have to hold out too much longer for help. I really hate feeling like this. Like my insides are hollow and the world is underwater and everything is wobbly and I'm not even swimming in it or floating really. More like I'm drowning, except I suspect I'd feel more if I was drowning.
     Mostly, I'm just tired. Tired of pretending I'm okay all the time. Tired of feeling like I should be able to will myself well. Tired of feeling like I have to justify myself. Tired of fighting my own mind. 

Finally!

Got in to see the GP. She was lovely, and sympathetic, and gave me an urgent referral. I'm to contact her in 3 weeks if I haven't been contacted to set up an appointment by then. I was a mess. Really nervous and twitchy. I didn't realise how afraid I was of getting turned away, or told I was imagining it or that I basically just need to buck up. I think people want to tell you "You're okay" because they think that that's comforting. But when you can't trust your own judgement about anything other than the fact that you know you are NOT okay, that's the last fucking thing you want to hear. I had to hand her my little notebook with my recent symptoms. Here, I can't think, but I made you this list when I wasn't a ball of nerves. It was good, though. I'm really hopeful that this will help.
     Yesterday was a good day, (loads of sleep, good experience at gp's office), but today is proving a bit hit or miss. I feel fine, mostly, but I caught myself having an old argument with the voices. One I've had many MANY times, but forgotten about. It's the one where the voices tell you that you're lying. You're FINE, this happens to everyone. It's perfectly normal, and you're just looking for attention, because you're basically human filth that doesn't follow the rules of shutting the fuck up about the secret unpleasantness that everyone deals with. And you ALMOST think the voice has a point, until you realise that you are standing on the side of the road, having an argument that is taking place entirely within your head, and the voice of the opposing party seems to be housed within a fucking pink wooden plank door in a goddamned fence. This fence door, as a matter of fact.

                                                               (Sorry if this is your door!)

Can you even imagine? Sure, maybe you're right and I've actually just decided I was bored with being happy and really desperately wanted people to look at me like I'm a fucking aberration except no, you're a fucking door, and this is definitely not something normal people would do. Plus, you look fucking ridiculous. So fuck off. I suppose the upside to this one is that the entire argument happened in my head, so at least there's that.
      Anyway, hanging on and hoping to get assessed soon. Have come round full circle and am almost hoping the suggest meds, at least in the short term. It would take the pressure off to fix this all myself. In the meantime I will just concentrate on trying to take the best possible care of myself I can, and hope it has a positive effect.

Holding pattern

Still attempting to get in to see the GP before they break up for Christmas. While I wait for that, I've been researching resources on line. There is so much out there I wasn't aware of. I've learned about TUFR and WRAP, and Rethink. I've found out that there is an Twitter community using the #schizotribe hashtag to connect with and support each other. There is so much more information readily available than there was 20 years ago. It is really encouraging and, I think, empowering.
     I'm going to go out and get myself a notebook. In it, I'll list all my positive and negative symptoms, past and present. Everything I can remember, everything I can put into words. Then I'm going to make myself up a chart. A sort of weekly grading system, so I can monitor my symptoms and my stress, keep myself aware of when and where I'm slipping. I was mainly "asymptomatic" for 18 years without meds, and whether or not I wind up back on them, there is no reason why I shouldn't be again. I'm tragically disorganized by nature, but I think having a self assessment method in place will help me both long and short term. In the short term, it will give me a reference of concrete things I can share with my GP and whomever I get referred to from there. In the long term, it should make self care much easier, as I will be able to see ahead of time when I need to go easier on myself, or seek out assistance.
     As for my current state, I am mostly settled into the aftermath, the negative symptoms, with only the occasional delusional thought process or minor visual/auditory/tactile hallucination  popping up. It is usually a momentary thing that is easily packed away, now. My motivation, on the other hand, is at zero. My ability to concentrate is severely limited at this point, and my self care is suffering, although not so much so that it's terribly noticeable to others. I'm still a bit withdrawn emotionally, and finding it very hard to relax. I'm aware of all this, though, so working to find ways to stop withdrawing. 

December begins

December has arrived, and I'm okay. It's not left me completely, but it's not interfering, either. I made the decision to go to the gp, to discuss my history, my past couple of weeks, my options going forward. Of course, getting in to see the gp at my surgery is an epic quest, and I'd honestly be shocked if I made any progress before Christmas break.
     So I'm distracting myself doing elf on the shelf light (they're here to visit and countdown, not spy and judge) and putting together boxes for the Southend homeless shoe box appeal. Tomorrow I'll go help out at the soup kitchen, delivering hot meals to people sleeping rough down the town and near the seafront. Anything that keeps my focus outward can only help.
     The kids seem fine, completely unaware of what's going on with me. So much the better. Mazzy was off school last week, and she actually came on Skype and chatted with us. It was wonderful. Even Chloe got excited. I miss her terribly. She seems well, which is amazing and probably more gratifying for me than ME feeling well, at this point. I do wonder how much of her troubles are the fault of the shit brain chemistry I might have passed on to her.
     I sound all doom and gloom, I think, but I'm not. I'm tired, but hopeful. December, the end of the year, and all the symbolic death and rebirth jazz that goes along with it always put me into a mood of retrospection and introspection, which is probably a bit compounded by my situation at the moment. Doing my best not to hide away in my hole and hibernate.
     I skipped Thanksgiving, as I've done every year since I moved here, but I have been thinking about the things I'm thankful for. I'm thankful, most of all, for Jim. He's been amazing (as usual), but especially about all this. He's definitely my anchor. I'm thankful for our beautiful family. They keep me grounded, and (holy shit!) WE MADE THIS. I'm thankful for all that we have. Fuck, man, people with the life I've had, loads of them live on the streets and have nothing. I'm thankful for his family, who take care of me like I'm their own. I'm thankful that there was an ocean between my mom and I this time around. That she didn't have to be the one to pick me up and carry me home and watch and wait for the tide to recede. I'm thankful that she doesn't have to know this time.

The one where I get serious and try to lay some shit out.

I think the difficult thing, for me is that I need to talk, or write. I need to get it all out to make any sense of the jumble in my head. Sometimes talking or typing in a void is enough. Sometimes you want to bounce things off of somebody. If you go on line, go on Facebook, where ever, and you look up anxiety and depression support groups, you'll find more than you could possibly participate in. They're out there and they're full of actual human beings, interacting. Talking about their meds and dosages and what helps and how to deal with all sorts of triggers and shit. People reaching out and looking at each other and understanding each other. That's a lovely thing.
     Now you try looking for a schizophrenia support group. There are a few. They have people in them to. I haven't joined them all, or anything. I can't speak for all of them, but man, the ones I have. If people are posting at all, it's some wild shit. It just sort of reminds you how really alone you are in this. That guy posting about the mind control experiments the government is doing on us all... I mean, I won't pretend I can't sympathise. I've felt that way. I've been where every one of my senses can come to no other conclusion. But it just made me aware of how abysmally fucked up I was.  I certainly didn't want to shout about it from the rooftops warning everyone.
     That's not a dig. We've all got our own brain demons to slay. It just reinforces the fact that there is nowhere to say this shit, unless I make a place to say it. No one is going to nod at me and say, "Yeah, that shit is rough. You'll pull through." No one is going to say anything, in fact. What could they say? The beauty of the internet is not having to see how they look at you, with this silent, sad concern. 
     I suppose I haven't said it on this blog yet, that word. Schizophrenia. Isn't it just all big and scary and weird? I bet it makes you think of asylums or homeless people. It does me, and I have it, so, you know. I don't want to be afraid of a word. I mean, I spent years in the thick of it. My every waking moment was full of fear, fear of myself, fear of my brain and what it would make me see/hear/smell/feel next, fear of losing everyone I loved, fear of what would happen to me.  Then things got better, and I lived in fear of it coming back. Fear of being there again. Fear of saying it, that word, and the way people would look at me once they knew. I'm fucking tired of being afraid. Afraid of a fucking word.
     So yeah, I'm schizophrenic. I suffer from anxiety quite often, and depression much less often. I expend a serious amount of brain space and energy gauging my capacity for dealing with things, socializing, even just being around people. Most of the time I do it without thinking. I keep my expectations of myself really low. People probably think I'm a lot of things that I'm not. But it's when I forget to pace myself and let myself off of doing too much that I run into problems, most often.
     Sometimes it's hard to let go of the things that we once enjoyed. Sometimes we think, oh, I'm so different now, LIFE is so different now. Maybe it'll be okay. You know what? Maybe it will, but it isn't worth taking the chance. So maybe, instead, it's time to stop trying to shove it all under the bed and forget about it. Maybe it's time to accept it and own it and then let it go.