Where to go for support

A good friend who has been following this latest drama suggested I look for some internet forums for support or something. A good idea, in theory.

The problem is when you actually get there, those forums are full of people whose issues are so different, so much deeper. Their lists of meds are the “shut the fuck up” psych meds. They are all on some heavy antipsychotic, clonazepam, and an anticonvulsant. Usually they also are on opiates and have a myriad of the various syndromes: neck pain, chronic Lyme disease, fibromyalgia. Lots of the conversations revolve around how to get more social security and disability benefits.

There are just not many people on there working, living normal lives. I don’t mean to be judgmental and I do understand that they are suffering and all that, and probably this superior attitude is what gets me into half the trouble I’m in, but still…where the fuck is everyone like me?

I do sort of know where we are. We’re hidden, afraid of stigma. Jake told me of someone else working with us with the same thing. I overheard another conversation once last year about someone else – with no name mentioned. We are all destined to ride it out alone.

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Freak out

Somehow I let myself fall asleep on the couch for about 4 hours. It was going to be a short nap, but then I couldn’t get up. My whole fucking body felt stuck.

Of course, the one other side effect this med has is sleep paralysis for me. So I had that for a long time. I had to try to pull myself out of it for about the last half hour. I feel horrible. Had dreams with no visual parts – just the sensation of spinning. I felt truly like I was losing my mind. These dreams also sometimes have me dreaming that I wake up and wander, very realistically. So that happened too.

Now that I’m finally up, I feel like I am sleeping partway. Things feel unreal, slow, frightening.

It feels like I am really and truly losing my mind. I keep saying to myself, “Psychosis is treatable too…psychosis is treatable too…” and drinking caffeinated cola right now to help myself wake up.

Why am I still trying to stop this med?

Continued…

Have I lost my mind? The one-third of a daily dose that I took yesterday because the withdrawal was so bad did me so much good. I slept like a human being. I got up today to work like normal. My body stopped hurting (except for my face). So why am I stopping?

I think the best option will be to cut this off for a few months, let it get out of my skin and system, because I had a lot of good years with this drug, and it didn’t fry my skin before. I found a couple of articles where they did skin biopsies, and found these weird deposits in the skin, but they went away after several months. Since it took a few years to get to this, maybe I can then take it again.

The other option is to see the shrink I last saw four years ago, maybe he has a brilliant idea. Maybe a different drug in the same class. Maybe lithium. But I don’t want to spend more money on shrinks, because it always sucks to go there, and I’m not really sure I like the guy. And I left there promising myself I’d never go back, that I could handle things myself.

No one seems to understand what I’m so scared of. I guess it’s because I’ve only known Jake for about 4 years, that is, post-good-med. He has never seen me crazy. He only sees my serious, work side. He doesn’t know how bad it can get. He probably couldn’t believe it if I told him.

Actually, I did tell him. It was really hard. I think I am glad I did, though. What happened was like this: I told him I just really need to talk to someone – which he knew. One afternoon last week, we were outside on a break, and I said that I just didn’t know if it was a good idea to tell him or anyone related to work…and that I just didn’t know how to say it. I slipped down from the side of the planter we were sitting on and sat down on the ground, because at that time I was all dizzy and messed up, both from withdrawal and also from the nerves of almost being exposed.

I just sat there for a while. He said, “Well, even if you can’t talk to me, you really should talk about this to someone.” I told him I had one girlfriend who knew. More silence. “Is it your family?” I was sort of surprised and said no. Then he said, “It must be something medical.” Pause. “Don’t worry, people are understanding about that.” Ha! I sort of laughed, and said, “No, they really aren’t.”

At this point, I was, obviously, incapable of going on. Somehow he had to go do something or I did. But he was on duty til late that night, so I didn’t go home. I called him and told him that I would be around, whenever he had a slow hour. Finally he did, so we went outside again, sat down by the wall, and just started talking about other stuff. Gossip, important stuff in his life, the future, fear, and then the conversation sort of slipped into secret telling. I still couldn’t talk to him, could literally not bring myself to say the words, so finally, I just reached into my bag and pulled out an article about the safety of long term lithium use, and let him say it. Of course, he blurted out, “Manic-depression?” – the term that sounds so fucking, well, crazy. I cringed just hearing it.

We talked for a while about that, not a ton of details. He said he knew someone else who works with us who also has it. He asked what happens. I can’t really explain. The thing is, all the crazy shit I’ve done, I tell as these cocktail party anecdotes, so it sounds funny. That’s the only way I know how to tell. So it made him laugh, missing the stuff in between, the horror parts. That was ok. It sort of softened everything. He couldn’t understand why I am so scared at the thought of having a med problem now, not being able to keep going on this one.

Anyway, I am sort of glad I talked. I feel much less dishonest, like I’m hiding a secret from everyone. It was just a good conversation overall, for a lot of the other stuff too. He also understood why I hated shrinks, didn’t think it was bad to try to avoid them, didn’t think I was being, well, insane, about that.

This probably wasn’t the most interesting post, but that’s how it turned out. We chatted until the sun went down, and he had to go back in, and I had to go home.

The other good news is that I’m looking at my to-do list for these two weeks off and thngs seem to be going ok. I didn’t do the hardest things on the list, but it isn’t like I just was frozen the whole time. I did some stuff. And I’m doing lazy stuff for work too, so even the time in which I can’t face really hard stuff isn’t totally wasted. Thank God for that. For these two weeks, for them not being too hellish even if they are rough, for me seeming to be ok now that I took just one pill, for seeing the possible solution of stopping and restarting this drug later.

Scared

I’m off meds now for about two weeks. Things are getting scary. I wake up at 3:30 AM. I itch all over. I am having serious withdrawal. Today I had to take just 1/3 of a dose, just to sort of make it stop.

I talked to my regular doc about this. He tried to give me Cipralex. No fucking way. That is “1000x more serotonin selective” which means it would make Sara feel dead, or deader than the ones that were already too bad. He is trying to keep me off lithium, I think because it makes him nervous, and because he doesn’t want to have “bipolar” on my file, because of aforementioned career reasons. I am considering seeing the last shrink I saw a few years ago, who was only semi-evil, just to get more input. But I’m always disappointed by shrinks and their unhelpfulness.

I read a lot of Akiskal’s articles this week. One paragraph in one of them that I liked (Journal of Affective Disorders 62:17-31, 2001) was that the use of mood stabilizers has to be balanced against the benefits of instability, and another article by him said that it is important to find a psychiatrist who understands that perfect control might not be desirable to the patient, that the patient’s identity and understanding of who they are is a person with these kind of swings, and that it is ok to not have a “full response.” Thank the goddess there are some thinking psychiatrists out there. I also found the concept of using the traits and mixing of them to determine personality type or disorder type (like, high fear and anger vs high fear with low anger) . Someone out there gets it.

I was also glad to see that Night Falls Fast has been translated to my native language.

That said, I’m kind of a mess. I’m happy, sad, crazy, lazy. One thing that is harder than I remember is how physically bad I feel off the med. Every peripheral nerve in my body is going a little crazy. Stomach pain, can’t move, keep dropping everything. I hope that is just the withdrawal and not how bad I can be on my own, which I suspect it might be.

And I’m terrified of how bad it can get, how bad I will end up. I want to know how long I need to wait before deciding that I’ve stabilized.

Anyway, I have to entertain company and stuff, so I can’t keep writing. But I’ll try to be back tomorrow.

Oh, and I talked to Jake. I think I am glad I did. More on this later.

Anxiety

Today I made and ate almost a whole lasagna. A friend ate too, but I ate most of it. Any weight loss I had from the last three months of hard work is going to be GONE.

It’s the middle of the night. I just got up and ran for half an hour. I was that nervous.

Why?

Because today I was in the sun for a total of about 5-10 minutes, but this med, the best one I have ever had as far as making me feel ok, be able to work, and not be totally numb, has made me incredibly sensitive to sunlight. My skin has aged a ton since starting. And I get a sunburn from the slightest exposure. I’m not even particularly light skinned.

This, with the blood pressure drops and the racing pulse and the weight gain, is making me think that I might need to switch meds. This is going to be a hassle as I have no shrink. And I’m afraid to mess with something that is finally working.

But it didn’t used to do this. So maybe the levels are too high. I guess that’s the first step. But god, it’s so damn hard. I just do not want to deal with this right now.

Aaaaaaaaaaaaahhhhhhhh

Last night I exercised hard. I slept almost all day, did almost nothing. I slept outside a bit, got a lot of sunshine at least. Tried going for an exercise walk with a friend, but was just too slowed. But somehow, in the evening, I managed to drag myself onto the machine, and also do some weight training. It felt great. I guess you really do have to do it every day for the difference. I slept ok, even though I went to bed late and slept most of the day.

And somehow, today I got up flying. The neighbor’s car alarm went off for about 15 minutes, making it impossible to keep sleeping. Since I’ve been up, I’ve been on the phone to insurance companies, am writing a work letter I’ve put off for months, ate breakfast, started hitting my “to-do” list. I wanted to do some writing on projects that really inspire me that I haven’t worked on in months. I bought not one, but two kites on impulse yesterday. Then I came home and searched the internet for an even bigger third kite that they didn’t have at the store!

But I also have that sort of scary swinging feeling. The one that comes out when things are shifting. You feel sort of like you are on the edge of a cliff, ready to fall or to fly, and you’re just not sure what is coming. (Hmmm, I really like that metaphor.) I am scared of this feeling. It feels out of control. You never know if you are going to crash or suddenly be flying, or be in the worst place – agitated with tons of extra energy, but feeling bad.

I am a control freak. I do not like this feeling. I am tired of spinning, not knowing who I will be when I wake up. I am scared, that one or the other of my crazies will come at a very bad time, a time I need to function well.

But maybe that’s just my baseline personality. Maybe when I’m not horribly depressed, I’m tons of fun, funny, witty, exuberant about life. This has always been the problem – are my highs damaging? I get all my best work done during them. I pick up language textbooks and learn new languages fast when I’m like this. I mean, sure, there are definitely little bad things like the incessant talking. It must be like hanging out with someone on coke. But that’s when I write, I actually work on the novel I want to write someday, when I do good work in my field, when I can learn new things at a rate that dazzles everyone, that I can convince everyone to jump on board for a wild idea.

For example, the time before last when I was high, I somehow – God knows why – got it into my head that I wanted to learn to fly a small airplane around the world. For about 2 months, I drove everyone apeshit about small airplanes. No matter what they said, I’d swing the conversation immediately back to how cool it was to fly around the world. It drove everyone crazy. It was surely at least a little insane.

Get this – now a friend and I are enrolled in a small aircraft pilot course. The friend now also wants to fly around the world. And I’m afraid to fly. Is this a good thing? Should my crazy be so contagious? And is it good that I’m getting this license? Saying you flew yourself around the world is cool. It is probably a very cool experience. But why the hell am I off doing it, randomly, with no connection to anything in my life, and even, in fact, when I’m somewhat afraid of it? I mean, I never do anything dangerous-crazy when I’m high. In fact, except for the irritation I feel, the agitation and anxiety, and how I probably drive people around me nuts, I end up doing a lot of cool things from it.

Now I debate going to my GP. I also debate lithium. The thing is, I work in a field that requires a license. I’m not an air traffic controller or anything like that, but there is a background/medical check. I am afraid of having that on my record. I would never endanger anyone; I’m not that bad off, but the stigma is so bad.

And I’m scared again. Where am I going?

Why

Now that blogger seems to be working better, I thought I’d go on a little about why, now. What are the things weighing on me at this moment?

I feel like I am a million years old. Not old in a physical sense, but old in that I’ve lived so hard, so extreme, so much. I’m tired. I’ve done hard things in life, and it’s not that I couldn’t do them again, it’s just that I feel used up. Worn out. Like I’ve seen enough, am vaguely afraid of that statement, “They can always hurt you more.” The loss of innocence on innocence seems unbearable, and utterly irreversible. I’m tired. Tired in an existential/spiritual way. They say I was born an old soul, and I feel like it’s just gotten older and older.

There are all kinds of things I want to do in life: write a novel, travel to some places, etc. But I can’t imagine anything else I want to do in the future that would be worth the work of actually getting there. And all of that is futile too – once you die, it’s the same as if you never did any of it. And we are back to point A: I am tired.

But tiredness isn’t enough to kill me. It will be when I’m racing, speeded up, can’t find rest, too much energy and nothing to stop it.

And I’m back to being all needy, wanting to call a friend.

I found another site that said one reason that is a bad reason to tell someone is wanting sympathy. You’ll never get as much as you need, and may not get any at all. Sounds familiar.

And in the meanwhile, I just, like some crazed Energizer bunny, keep on going about life as if all were normal.

Will try to post again tomorrow, or even later tonight if I can’t sleep.