Wednesday, March 21, 2012

Matters

Up and down and in and out today. Not down, down's not the right word, it's not that kind of down. Or up either. It's nothing to do with sadness/happiness. It's energy spinning and crashing. Dizzying. Came close to puking/passing out on my friend's kitchen floor after a hard uphill bike trip in the sun to her house hauling a 60-lb trailer. It was great. I put my head between my knees and she covered me with ice packs and then ten minutes later i was fine and we watched Motherfucking Bike and everything was funny and OK. She makes most things funny and OK. Thank God.

Saw Dr. M this morning and he preauthorized Abilify to the ins co while I was in the office. Risperidone = failure. It sucked sitting there listening to him tell the insurance company that I'm bipolar 1 and spelling out for them all the drugs that have failed. Like it was a hammer hitting this nail over and over and over, this failed, that failed, this also failed. I don't think he liked it either. I kept trying to turn off the agitation while he was talking to them but by about halfway through I couldn't keep the lid on it and I was shaking like a #@%$. I felt like crawling under the fucking leather couch, which, hello, newsflash, vegans are not cool with leather couches. He was all, you're still having a lot of agitation.

ORLY?

Hopefully Abilify will get the edge off this. I can't remember ever being like this so long, about a month and a half. Downs have lasted that long easily, longer, sometimes almost a year, but ups, usually three, four days. This is unusual. It's more of an agitation than an up, though it's great when that sparkles into it with its hard diamond edges. And the creativity has been off the charts. There are not enough minutes in the hours in the days to brain-dump everything happening in there. That part's good, the alternate-reality functioning in a fairly non-crazy way constantly going on. I want to be able to devote time to it but the current living/working situation does not allow enough. Each day would have to be about 37 hours long (with no sleeping) to even start to get it all out.

I'm going to see Hunger Games at 12:10 a.m. with my brother tomorrow. Yes we are those idiots. Then if it's not lightning and craziness I'm going to get up early and bike 20 miles to work Friday morning. I have so much energy when I get about three hours of sleep. The trick is to not hallucinate while I'm riding, ha. It's excellent that the bronchitis is gone. I think half the problem recently and in Mexico was that I couldn't burn off the energy spins because of the breathing problems and the hacking fits. But that's mostly over now and brutal bike trips really help. Not with the weight problem though, and yesterday the three-bite food problem started again. Not good with all the other weight loss since December, which wasn't extra weight in the first place. Seems like every time i get enough padding on me to hold my clothes up, wham, some kind of stupid bullshit in my brain or body goes wrong and I'm either too mental to eat or too sick to digest for just long enough to wind up with all my ribs showing again.

Right, shut the fuck up Lurid, no one wants to hear you complain about not being able to keep weight on.

Here's a picture of the way the word "MATTERS" at the end of "I Do Not Want This" looks in my head. It comes in from the right and gets this shape and color as it passes through the moment between when it's in the future and when it's in the past. The construct of now.

It is jagged at the edges because it's screamed instead of sung, and shaped like a fish because of the way the "t"sound comes out like a "d", which pinches words and flips the right-side half upside down so the whole thing is like a smashed-flat two-dimensional representation of a helix in my head.

Since the last part of it has been screaming through my head all day:

I wanna know everything
I wanna be everywhere
I wanna fuck everyone in the world
I wanna do something
that
MATTERS

That sums up mania, right there.

8 comments:

  1. As my best friend is one of those people struggling to keep weight ON, I think that's a perfectly valid thing to talk about. It's not healthy to be underweight any more than overweight. I hope the Abilify works. That's the last drug they wanted to put me on, three months before I discovered I didn't actually have bipolar disorder. Some of the side effects I heard about scared me so much that I refused to take it, though.

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  2. PS - it's fun to meet other people with Syn. Mine is solely color -> grapheme syn, so I don't see shapes at all, but still. I love seeing what other people's spectrums look like.

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    1. Hi Amanda; thanks for writing. I love to talk about synesthesia too, and am always interested in others' experiences. Do you know if anyone in your family has it? I seem to be the sole syn in my family. I wonder how linked to bipolar it is; I know there's a strong autism link.

      Thanks for the affirmation on the weight loss issue. It's so frustrating to have people look at me and compare me to themselves and then say, "I hate you." "Stop bragging." "No one wants to hear that." So I don't talk about it much.

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    2. My brother and one of my sisters has it as well, though my sister lost hers once she started learning Arabic apparently. Strange. Or maybe she just didn't think about it long enough? Not sure. Anyway, it's gone for her. There's a possibility that my mom had it, but if she did, most of it is gone. When I was growing up, I thought everyone had it, thought it was normal to see everything in color. I tried to teach this guy I dated in college how to see in color, and he remembered that in grad school when he learned about syn, and when we reconnected years later, he told me about it. I don't just associate color with letters/numbers, though that's mostly it. I also associate color with people, with sounds, etc. It's not as strong that way, but sometimes it comes out, and when it comes, it's very strong.

      My sister (the same one who had syn) is built like a bird. She's naturally a size 0 and actually works hard to gain a little weight, and is very self-conscious about her size. People make insulting remarks to her all the time. I think skinny-stigma is just as bad as fat-stigma in our society.

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  3. Ok, first take this with a total grain of salt but I also really want you to know....Abilify can cause agitation. For me and one of my readers, serious agitation. It also I think (you'd have to look it up) if it isn't weight neutral people may lose some weight on it. Can't remember for sure. I know it is not every doctor's favorite drug. My experience doesn't help as it was quite extreme and my doctor even anticipated a negative reaction, although not quite what I did have. She was just trying to help me feel less threatened by my new antipsychotics and abilify was newish and less scary. But it sounds like you need sedation more than anything. Again, no doctor but have been on everything, if it were me I'd ask about Seroquel. I specifically love the XR version because it is sedating but less so and it works better for me. It tends to cause a little weight gain but isn't horrible for that; might help get the manic loss back. I went through about 9 months of nothing tasting good after I started Emsam and lost weight rapidly and I know the Seroquel kept my weight from dropping too far. Just b/c it works for me doesn't mean much, and Abilify clearly works too. You just might want to look it up and be sure. This is a great chart/follow-up information written by a doctor who specializes in BP and who is very conservative which makes me love him. He is how I finally knew what was wrong with me.

    http://www.psycheducation.org/depression/meds/moodstabilizers.htm

    I'll be back to answer the other question in a bit; my computer needs to cool down for a while. (problem I just can't fix at the moment. Urgh0.

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    1. Hi Jen. Thanks for the note about Abilify. I'm very much hoping it doesn't have that effect. I often seem to get the opposite side effects to the ones listed, such as agitation when a drug claims to be sedative (Benadryl is a no-no for me, and the risperidone caused bad agitation problems, racing heart, blurred vision, and the worst insomnia I've had in a long time (though some of those side effects are well documented, just with a lot less frequency than the sedative side effects). If the Abilify doesn't work out, I'll ask him about Seroquel--I've followed your story and seen that it helps you a lot. I've finally gotten to the point after years of refusing to take meds that I know I can't go on without them, so this is a big step for me.

      Thanks too for the link. I think I had read something else by him somewhere on the web a while back, but this link is much more informative. I have those weird side effects of lamictil he mentioned (word searching, forgetting names, like my automatic functions are no longer automatic), but i'm at half the dose he said those start to show up. Stupid sensitive system.

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  4. Comment 2-
    You asked about my spatial relations isssues. I'm not completely sure which you're referring to so I'll give 2 answers. One is why am I so clumsy. There is part of this that is simply I always was. I have a lazy eye that wasn't diagnosed as a kid so I don't have very good depth perception. I've never seen differently so it makes no real difference except I do make mistakes sometimes. I also have an ankle that I have shredded over the years that needs surgery. I wear a brace but without it (in my house) I fall a lot. However lithium is a huge contributor to the whole thing. With 2 significant toxicities, one of which was pretty recent and serious enough for 3 days in the hospital I have lost some balance and other things in the dearly departed brain cells. Lithium gets me in a lot of trouble. And truthfully I haven't had a level done when I should have had 2 or 3 by now because waking and getting to the lab is hard when I can't sleep and I can't afford the copay. So I may be a little toxic. The last time I had no warning signs of typical toxicity aside from a few headaches until I was hallucinating and my very wise psychiatrist guessed correctly. If I'm not on lithium I am cycling so fast that I can't keep up so we just carefully use it.

    Another thing I talk about a lot is sensory impairments. This is an OT thing and I have some extra training in it. However it is mostly for kids and I've altered it to fit adulthood. I used it with patients for quite a while before realizing it might help me, and it does. SLeep is an issue still but it used to be nothing made me sleep. Then I treated the sensory issues and it got a lot better. Basically my body lacks awareness of where it is hanging out in space. That causes agitation, sleep issues, and just a sense that you aren't centered I guess, although I don't mean the new-agey centered. Just lacking inner peace. For that I use a weighted blanket that is heavy enough to tell my body where I am. It helps me sleep and often i don't move once the blanket is just right. I have a custom made double sized one that weighs about 22 lbs; I went over the usual rule of thumb of the blanket being your weight divided by 10. In the last months I haven't wanted to leave the blanket, even though there is another on the couch. It doesn't weigh as much and isn't sensory happy fabric. It's one that I actually delayed a hospitalization until I had it because I knew I wouldn't sleep in the hospital with the thing I'd previously bought for hospitalizations which is very light. The hospitalization one now is I think 10# and works ok when I'm not home or am on the couch but I love the heavy one. Other sensory issues I have are total intolerance to noise when I'm manic. I wear sound blocking headphones like people wear on rifle ranges for that, and I carry ear plugs in my purse and use them if say Walmart is too much to handle (if I am stuck going there at all). I wear them in the counseling waiting room sometimes which has caused a few funny scenes of the psychologist knowing WHY but not succeeding in subtly getting my attention. When I'm manic I can't stand any flashing lights. I don't have TV, just DVDs and I don't use them often. I have trouble driving at night when I'm sensitive. Even people's built-in DVD players can make me nuts if I am behind a car with one. One way we judge how manic I am is how many clocks I'm hearing. There are 2 in Dr. Mind's office that click slightly out of sync. He's turned on off for me before,but mostly it's a good way to judge if I am infuriated by the clocks. Can't think of other sensory stuff right now. I'm sure there is. I'm very picky about touching textures or being touched.

    Hope one of those is what you were asking!

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    1. I had never thought to use a weighted blanket; I'm interested that it helps you so much. I always love that feeling at the dentist or wherever getting an x-ray when they put that thing on you. Maybe I'll give it a try!

      My kid has some sensory issues, which I suspect may have a hereditary element. I sometimes chuck a bowling ball in her wagon and have her pull it around the block, which helps her a lot. Or just having her shove a laundry basket full of books around the house, which she loves. I know what you mean about the feeling of having your body not know where it's hanging out in space. I refer to it in my mind as "floaty head," where my brain feels utterly detached from my body to the point where I feel I'm watching myself from above or to the side.

      Interesting about the hearing/light issues too--I've noticed when I'm hypomanic or nearly manic that I have a lot of difficulty modulating the volume of my voice, and of determining where sounds are coming from. Then again, I hear crickets and people saying my name too when those things are clearly not real. Thank you for sharing all the info--it seems we have a lot in common.

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