10 and 5.

A few months ago, basic tasks and chores took me so much longer than usual. I couldn't decipher the manufacturer's expectation and that some where on the end of this path lay money. I was embarrassed; what was wrong with me?

As this continued, I started thinking about my family's mental health. It's not so good. A dozen or more relatives on either side had bipolar disorder. They were exciting, intelligent people. I realized that I'd had a stereotypical view of was BSD really meant. But the more I read symptoms, the more I began to recognize myself now, in college, in high school, and back even further to preschool. I was starting to see myself in the way qualified authors and others describe actual experiences. I thought, "Oh. Is that racing thoughts?" and "Is that pressured speech?"

So as is common, I found out what was different about me at 28, which meant I was without treatment or with the wrong kind. But I had waited ten years for the validation, the tiny explanation that was the tiny key to everything of me and in me.

But it didn't make me better. Tasks still seemed insurmountable. What if someone interrupted me to chit chat? What if a student needs something right that second? I didn't want to risk letting the students see what was happening.

Because everything was so difficult and because I wanted to get away, I started playing 10 Things (which ought to be objects or tasks but alas, it's Things). I tell myself, okay, I'm going to start on this and do at least ten things. Sometimes these are big if I'm stronger, Today, I counted every room from which I took the trash and then every room for which I put in a new grocery store bag. This felt like a big accomplishment, and I'm so glad about that because I couldn't have done more then.

So an explosion of a room can turn into 10 things. And if I can't do that much, I ask for help, and I write down what I've done--it's like a reverse to-do list, and it's much more encouraging. Then, I can leave the task for a while or go back to work on my second set of 10 things. That limit really seems to help with my anxiety. And I end up being more productive!

Five Goals is something I started during once I came out of a trance and realized I was in a hospital ward. Each day, I would write 5 goals in my journal. I could write around them as long as I was trying. The goals can be large or small, like setting the table without command, take a walk in the sun, get an A on that test.... This way of thinking works for me. It makes me productive as I often am when manic. But even if I can't handle this situation, I can go to my car, find and remove 10 things, and put them away.

It seems to fall under the semester-long goals to reduce chaos and create beauty.

A Leap.

About three weeks ago, I decided to take a major risk. As my mom said, it isn't practically right, it isn't financially right, it isn't career right. But it's still right. Mom said we hadn't been doing a good enough job of treating a mental illness as we would any other disease. I wonder if other consumers (apparently, this is the selected term for people who have mental health issues) struggle with that--treating themselves as they want others to treat them.

I took a semester off of work. The structure of a semester doesn't really allow the faculty to have extended leave (such as the twelve weeks for FMLA or the six weeks for a birth), so I didn't know what to do. I spoke to my HR director in general terms, and she seemed uneasy about it, which didn't surprise me, especially since I wasn't telling anyone.

But a series of minor and major screw ups at work (problems that would have been shocking even a year ago) and my new experience with sleep writing (ridiculous words and sentences that made no sense at all or made no sense in context) and sleep walking and talking, all while appearing awake. It seems more like some kind of trance than sleep. I've grown accustom to Josh's nervous-kindness face as he tries to figure out to whom he is talking. I've been mean a couple of times, but Josh said he could tell it wasn't me, and he remembered one of the books we'd read advising people to avoid talking to the disorder. This makes me think about...Dax? on Deep Space 9.

Anyway, I knew I could not go on when I spoke to three people in my office and then realized none of them were actually there. My boss always says I'm always trying to prove, to myself and everyone else that I can do everything even if it kills me. So at the end of winter break, we spoke on the phone. I told her what had been happening. I told her my ideas for solutions. She said, "Do what is best for you. If you need to take a semester off, do it." Whoa.

So I wrote a letter requesting that leave of absence. The president of the college sent me a kind and concerned approval letter. I only have about three weeks of sick leave, and that's probably gone now. I've requested voluntary shared leave, but only staff can do it, and they spend as much time around me as the faculty do. Dr. N filled out the paperwork for FMLA quickly, and he checked that the absence was medically necessary. I wondered why he did that so readily. But later, I saw the diagnostic code on the lab slip, and I saw a different number, which indicated that my recent episode was severe mania with psychotic behavior. My interacting with the hallucinations or delusions must be the behavior part.

I haven't heard anything from HR, so I don't know what happens next. But I've been spending more time with Oliver and even having conversations or cuddling with Josh. I have books on deck to teach me more about the condition. I'm scribbling again. I'm doing well establishing a sleep schedule. My vision is still so blurry that anything is a struggle. My purple reading glasses are dorkycute though.

So the greatest fear, obviously, is money or insurance. We just barely scrape by most months anyway. Josh has applied for a few full-time positions at community colleges. I can't even fathom how to make this work. Tax season is here, so maybe we'll get a refund. But basically, I try to call on faith and let it open into hope. I've had so little hope these months. Mom says that if you do the best you can, God stands in the gap. So I'm just waiting to see what he'll do, both for our practical survival and for my torn up mind and spirit.

Right now, it's just nice to experience days that are not brimming with dread or hopelessness. It's still there, but I think my mind really wants to be well. I see my brain as the cruel one and the one that responds to medication. Mind is my awareness, emotions, all that. Medication is working hard on my brain, but I think healing the mind is something I'll have to do myself, with help from the council. Maybe that's what these few months will be: time to take better care of myself. And many aspects of BSD are so discouraging that I think I'll still in denial to some extent.

So pray, burn incense, go for a midnight drive, or whatever feels like compassion and hope to you. Contribute to hope that we will have what we need and that we'll be better, whatever that ends up meaning.

Strange Scribbles & Double Vision

Yesterday was a blur. I don't remember going to bed. At work yesterday, I discovered a comment on a student's paper. It said, "Include all your painful nights, but you look good and normal." Was this addressed to me from my subconscious? Had I actually been asleep? I had no memory of the words. I didn't even remember finishing the paper (which is why I looked back at it). Bruce said I should check the other papers. I did, and I have several more odd little notes.Then even last night, I texted nonsense to Bruce.

The only other time I remember writing in my sleep or close to sleep was when I was sixteen, when I think I was having a long manic episode. How can I do my work if that might happen? Josh said I looked awake. I don't remember feeling sleepy then. It scares me. I already had little control of my sleep, but what if I write something inappropriate on a paper and don't realize it? I'll probably have to ask Josh to check for me as I go.

Another weird and awful experience I'm having is blurry vision. This started a few days ago. I can't read. Letters rearrange themselves, stretch, shrink, and turn into other letters. This, too, is making work quite difficult. I hope it will go away soon. It's the same with or without my glasses. Traffic lights and brake lights double or triple.

Apparently, Abilify can cause sleep disturbances (whatever that means) and blurred vision. The pharmacist was unsure about the sleep or trance-type writing. He said that could be the meds or could be the illness itself. I don't like not being able to tell the difference, and it's happening more and more.

Just yesterday, something else started: sudden involuntary jerks, like the kind you might have right as you fall asleep. It makes me feel like something like a piano is crashing next to me. My muscles get hot, and my tendons tense. 

The hallucinations have been creeping back in. Often, I just think something is moving on the floor, or I see movement at the edge of my vision. I saw the red streaks on the road again a few weeks ago. I saw a soldier standing in his ACUs, standing outside as I passed. I turned, and I only saw trees.

The worst one lately, though, was this weekend. I was sitting on the floor in the guest bedroom, getting something from the bottom book shelf. I heard a man's voice from beside and above me, first hushing me and then whispering something I couldn't understand. I thought it must be Josh--who else?--even though it didn't sound like him. I looked up and over. Then, I made the loudest sound I've made since I can remember. It felt like a scream, sounded to me like a shout, and sounded to Josh like a yelp. The fact that no one was in the room with me was terrifying. I got out of the room and leaned against the wall, panting.

On Friday night, I started taking new prescriptions. Dr. N increased my Abilify from 10 to 15. He said that will get rid of the hallucinations. He also gave me a script for Cogentin. This was supposed to calm that maddening agitation and shakiness, which he said the Abilify is probably making is worsening. I don't know yet if the higher A dose is doing much yet, but it may take a while. The Cogentin seems to be working though. I've had almost no physical agitation, and my shaking is better. So I'm excited about that. It makes getting ready for work and being at work and just existing much more bearable.

A few days ago, I felt completely tired of living--exhausted and apathetic. I didn't want to live. I wasn't suicidal, but I had had enough. I couldn't manage to find anything to look forward to, even though I knew that didn't make sense. Every day seemed like something was dragging me through a thick, cold mist. I feel as if I never really rest.

The Truth, at the Moment.

Trigger Warning: This post briefly discusses suicidal ideation with no description or specifics.

I wish a certain word existed: one that means better or improved but that does not mean all better. When people who aren't right in the core of it ask me how I'm doing, I don't know how to answer. Better but not all better? I can say a little better, but that seems evasive.

Anyway, I've been taking Abilify in addition to my lithium (now a slightly lower dose), Wellbutrin, and a beta blocker, for a little over a month. Has it really been that long? I know the Abilify has been making a difference. I sleep a little better even though I still wake up every half hour. The sleepiness has finally started to fade out, and I was afraid the higher dose would bring it back. I just started the higher dose a few days ago.

I'm not sleepier yet, but I have terrible blurred vision .When I try to read (or type!) letters disappear, rearrange themselves, and become other letters. Josh got some artificial tears and helped me use them. I never aim properly when I do it myself, so I lay stretched over the armchair and held open eyelids, so he could put in the drops.

Before I started Abiliify, I was having increasing suicidal ideation. My brain was working on that without my mind's permission. It was just there all the time, at the edges of my mind, with an occasional, "Hey! You should think about this!" Hallucinations came back. After I'd started the Abilify, I noticed that I wasn't hallucinating and that my suicidal thoughts were basically gone. I figured just these two changes (my most alarming symptoms) alone were worth the medication.

The suicidal thoughts returned for a couple of days, but at least they weren't a totally random flare up. I was highly stressed, suspicious (which, interestingly enough, is common to people with BSD--bipolar spectrum disorders--and is their version of paranoia), humiliated, ambivalent (the mind and emotions getting yanked in two directions at once), intermittently angry, guilty, and terrified. Still, I had no plan or intention. 

Unfortunately, the hallucinations started popping up while I was on 10mg of Abilify. They're still around after the switch to 15mg, but I hope that will change soon. At work last week, I looked out through one of the glass doors and saw a soldier in his ACUs. I looked closer, and he was gone, a tree in his place. In the shower, I saw a shadow on the wall waving at me. Movement happens in my peripheral vision so often (probably even more now with the vision problems). I've seen, for split seconds, old pets on the floor by my bed or watching me while I get ready or do something in the kitchen. Objects so easily turn into something else.

The scariest, though, was yesterday. I was sitting on the floor in the guest room, organizing my stickers (massive collection) when I heard a hissing exhalation like a man shushing me. It was coming from a spot next to me but up, as if he were standing right over me. I thought it was Josh, even though the voice sounded nothing like his. The voice said a word or a few words, but I couldn't understand. So I stopped and looked up to see what Josh wanted. No one was there. Some straggled scream/yell tore out of my chest. I got out of the room and had to breathe hard for a while. I told Josh about it. Then, I went back inside. Without the weird mini hallucinations, I'm afraid to be alone. I don't know what I'll see or how I'll react.

Probably with all this and work stress and other stress, I began feeling hopeless. Well, not began really; I've always had pockets of hopelessness. But last week, I had no desire to live. I wasn't suicidal; I didn't have a desire to die. I just didn't want to go on with my daily life. And I have started inadvertently  collecting reasons that people I love would have better chances at happiness without me. I never really understood people's thinking that way, but I do now. And I know that my thinking that way, whether or not I indulge it, is not a good sign.

So I hope Abilify will take all that way--at least that much. My doctor also prescribed me Congentin, which is for Parkinson's disease and now to combat side effects of psychiatric meds. I've had much less shaking, restless and exhausting agitation, and inability to get comfortable. It was becoming really noticeable, and more importantly, it was maddening. I think some of it, at least, was the illness itself--a manic thing. But the doctor thought the Abilify was making it worse. Either way, I'm relieved something is working on something!

The last couple of days, I've felt okay. I know that could (and will) just in a week or a minute from now. But I try to use the gifts of calm while I can. The internal landscape of the moods makes me think of the beach. Sometimes, a storm is raging. The water is dark and ominous, crashing and tossing. Deafening thunder.

Other times, it's sunny, and people are laughing, brightly colored towels and tents are everywhere, and the Italian ice cart just came by. But that doesn't last long. The sun turns to a glare and starts to burn me. My swimsuit straps are driving me crazy. Everyone is talking talking talking, and they are everywhere. Even the water scratches and irritates me. But when I get out, I'm too cold. I try looking for pretty shells, but they're all broken along with bottle glass that the sea hadn't had time to soften yet. I come to a washed up jellyfish that is dying. A cluster of little boys are poking it with sticks. Only one boy comes over, tears in his eyes, and dumps a bucket full of salt water onto the jellyfish. We catch each other's eyes for a moment; I don't know what to do either.

And other times, the sky is bright, but I can still see the lightning in the distance, and a rhythmic devil rain is tapping me on the head and shoulders incessantly. We have an idea: we'll use the sticks to get that jellyfish in the bucket. I carry it, not wanting the boys to get hurt. I walk out up to my knees and toss jellyfish out ahead of me. I walk back, and seemingly moments later, the jellyfish is washing back up toward the sand. I don't know much about jellyfish, but it’s clearly dead. The bucket boy and I just stand there and watch the waves push the jellyfish farther and farther out of the water. We just stand there. It died anyway.

And the weather could change at any moment, for any duration, to any extreme.

The Ink of It.

I wrote this in my work notebook during a writing exercise in class. I think it shows my disintegration into something. The self-talk gets desperate as I tried to keep it together. 

September 4, 2014

I got sick last night. I hope I can get through this day. Standing is difficult. I need to be better to Josh. I’m so often frantic or sick. 

I want to know when. Spontaneous is nice but only if it’s extra. Oh. I can focus on so few things at once. The house is slipping completely. I’m always behind with work. I want to sleep and to go, move, find new bodies of water. Splash. Meditate on water. I feel like a slightly different person. Is this a phase, or it this me under the layers of cycling and sickness? I loved swimming as a child, so maybe I pushed it away. 

I have not felt well. Yesterday, I became exhausted and unfocused during a conference call, tapping my fists on the table without meaning to. Bruce said that I looked like I was crumbling and running out of time to be human. Today, I’m worn out, and my limbs have a low, sickly electricity. I need the day to end. I need the drive home. I need help. I’ve been feeling kind of angry—not about anything or toward anyone in particular. Music helped a little. 

I feel a little like I may not handle this class. Like I may fall and turn into a million twisted paperclips with a crash. 

Oh. I’m hurting too. I need…help. And more water. And a chair. 

Halfway. Eating didn’t help with the weakness. Help. Sun. Water streaming down my back. Water in my shoes, on my wrist. Kisses in excess. Like stitches. Out of these clothes. Quiet! And for that engine to leave my body and my water bottle. And a hand that does not shake. And tiny metal beads in a bucket with a little water—sink up to my knees. An open mouth. The. Slip tissue. Something that wiggles and isn’t gross. Banana candy that invades the sinuses.

Triggers.

Triggers are events, places, things, or situations that spark symptoms of a disorder such as post-traumatic stress disorder or depression. In my little spiral work notebook, I worked on a list of my triggers. I don't necessarily know what state they trigger, whether they are related to panic disorder or bipolar disorder, or whether they're really just things I don't like, but I want to be as aware as possible.

Triggers

Meetings before class

• The rush this creates is intolerable. I feel utterly panicked and trapped, and I question everything. Xanax in advance helps, but I still feel this. 

Breathing trouble
Preparation for car trips
Loud, rhythmic noises (barking, alarms, loud crying)
Lack of sunlight or access to sunlight

• Josh has seen me nearly lose my composure over broken blinds. Gloomy days usually prompt depression. 

Getting interrupted

• This one is mostly because I feel like the person wasn't listening at all. If he or she interrupts and then says, "Okay, so you were saying this...," and can actually repeat me, it doesn't really bother me. 

Not being able to talk when I need to

• I'll bounce my leg and tap my fingers or just collapse into myself.

Impersonal nicknames

• I react badly to innocuous names like sweetie, honey, and such. These make me feel I'm just like everyone else. And I'd rather be nothing. I love nicknames, but they have to be uniquely mine or somehow unusual.

Lack of water access
Hunger
Jealousy

• The slightest thing can spark this, anything that makes me doubt or question my place, my identity with a person. How ever mild, and how ever much I know it's all fine, this usually creates something like rapid cycling over the next minutes or hours. I don't even have to feel jealous.

Upset plans
Busy restaurants
Spiders

• My terror defies logic. It's almost heart-stopping. 

Lost items (shoes, jackets)
Being tired in public
Checking work E-mail

• I have to set my inbox so that I can only see two or three messages at a time. Still, I often avoid my work E-mail, which of course helps nothing. 

Grading
Counter service

• I can bear table-service restaurants most of the time now (and that's pretty new), but counter service stresses me horribly. I'd just as soon sit down and not eat. 

Prolonged cold

• I've always been cold-natured, but now, cold leads to painful shaking and muscle spasms. I think some of this is because of lithium, but it's also how heightened (positively or negatively) the senses are in mania. 

Others' mistakes on the details of my preferences

• This is obviously one that reveals how difficult I can be. I build everything up in my mind. So if I don't get what I expect, even if it's a sandwich without mayonnaise, I feel myself spinning into irritated despair. 

Lack of repetition and reinforcement

• My mom used to say I had a hole in my love bucket. I do need constant refilling, even in a secure relationship. 

Mess
Missing essentials (socks, cups)
Changed decor in a familiar place

• I can feel a change, but I don't usually recognize it right away. That feeling of change makes me feel I'm losing my grip on safety and sanity. 

Twisted or uneven blankets
White noise

• Fans, noisemakers, static from the monitor, and other background sounds that soothe many people are maddening for me. They feel invasive and threatening.

Side Effects.

Side effects are supposed to be one of the main reasons people with bipolar disorder stop taking their meds. And no wonder. In some cases, I can't tell the difference between side effect and illness. But these are what I've noticed.

Wellbutrin

• It switched me into mania, probably what should have been my first highly recognizable episode, so I'm not sure what to call a side effect. I don't notice any side effects of it now, after almost three years. 
• I wonder if it has contributed to my near-total inability to cry. 

Abilify

• I'm having a lot of agitation lately, which I think is a disease symptom but Abilify may be irritating. 
• Extreme sleepiness, to the point that I think I may fall asleep standing up in class. This has gotten slightly better, and it's supposedly rare, so I hope it will disappear or nearly so.

Lithium--oh, boy.

• Frequent, urgent urination. It's so extreme that it would be funny if it were someone else's story. The kidneys work overtime to flush out what they must perceive as poison. 
• Digestive upset, start and stop. 
• Extreme thirst. I have never consumed so much water in my life (including pregnancy and breastfeeding) or longed for water so deeply. I'll need a whole post for that. Apparently, I have to drink to replace what my kidneys flush out so eagerly. This side effect, though not terrible in itself, has really changed my life. I must have water in large quantities with me at all times. 
• Dry mouth and cracked lips, to the point of bleeding.
• Interrupted sleep. A lot of this is due to needing to drink water and needing to pee. But I wake up about every hour. 
• Dry skin, sometimes extreme. The webbing between my fingers is always wrecked. My hands are rough on everything, and they have aged from the dryness. 
• Dry, brittle hair. My hair, long as it is, was so healthy. Now, it's dry and broken. 
• Decreased sexual and even sensuous interest. Touch affects me less, and I seek it less.
• Nausea and food aversion. At my highest dose, which I'm now just below, I threw up most nights. This was horrific, and only desperation to get better kept me on that dose.

Xanax

• None I've noticed.

Dr. N says that if the Abilify works, I may not need the lithium at all. I would not mind dropping some of those side effects. I know the meds are worth all this. But it's hard to believe that sometimes.