I went into McLean Hospital with the diagnosis of depression, and of course, anorexia. I left the hospital more concerned about It, which seemed to be some kind of psychosis, than anything else. In the hospital I was treated with medication that helped me with depression, my ridiculous constant crying, and binge urges. However, I still had the mental confusion that started two days after I ran the 5k. It was there only a tiny bit then, and I hardly noticed it, but it has gotten worse and worse. Here are the notes I have written for my T and my Dr. P. I actually wrote these last Tuesday and added to them just now:
INFO FOR DR. P AND MY T (WRITTEN WHILE I WAS FEELING OKAY)
Added to (in boldface) 1/30/11
I used to call it The Thing when I was 38-39. I think that I should have a new name for it now because I am older, and hopefully, wiser. I turned 53 in the hospital. My new name for it is “It.”
This is what happens, as I described to the social worker at the hospital, my doctor at the hospital, and my T:
First of all, I get pressure in my head. Kind of a gooey feeling. Not exactly a headache. It is not painful at all. In 1996 and 1997, this feeling ended up lasting for a fair portion of the day. Lately, this has occasionally been the case.
Secondly, I get unsteadiness on my feet. I rock back and forth as I stand. Not dizziness at all, just rocking. Lately, the rocking has started way before the head pressure starts. Correction: The rocking is something else entirely I think. This dizzy spell hits me suddenly and is much, much more intense. It lasts 10 to 15 minutes. It is kind of a spinning around feeling–sometimes. Sometimes it is an up and down feeling. Music makes it worse.
I get tingling around my lips, and occasionally my entire lips and jaw area. Lately, I’ve been getting tingling around my upper arms as well.
Then, confusion. My thoughts are all jumbled. They make no sense to me. Still, I am able to speak and communicate with others, but barely. At this point, I am completely uncertain as to whether I am making any sense at all.
It gets worse. I can no longer speak in sentences and don’t make much sense. It is interesting that I am generally aware of this but can’t control it. It’s like my thoughts aren’t right so I can’t get the right words out. Once, when I was in this state, I was given a PRN, and spilled the water all over myself while trying to drink it.
Sometimes, I have heard people whisper about me saying that I am fat. I thought these whisperings were real until a staff person said that they were not. Once, I heard someone say aloud that I had gained weight, and after that, everything was said aloud about how much weight I’d gained. Again, I was pretty sure this was real and am still reasonably certain that it happened. This has stopped.
If this problem is allowed to continue, at its worst, I sit down, and cannot get back up to a standing position. This has not happened since the hospital.
In 1997, I had a problem I called “torture,” which was a phase of The Thing in which The Thing performed mental torture on me, but I was able to verbally communicate with others. This returned as of today 1/30/11. It seems to be progressing rapidly, and I find this concerning.
In the hospital, Haldol stopped this problem in 15-30 minutes, 45 on rare occasions. So I know now to take Haldol when I know it has started. The generic Haldols I received from the pharmacy take way too long to kick in, so I do not use them. They are a different brand.
Petting Puzzle works amazingly well. Once, she stopped It immediately. The next time I tried, she stopped It in 10 minutes.
It generally lasts for 45 minutes to four hours.
It is interesting that while this is going on, even when I cannot make sense of my thoughts, I am able to write in pencil and make a fair amount of sense in my writing. I do not write in pen for a variety of reasons, mostly because I need to erase. While this is happening, typing on a keyboard, I learned, is next to impossible. Although I am able to operate a mouse without any difficulty, I cannot touch-type. I can only use my right index finger and look at the keyboard, and then look at the screen, and I do this ridiculously slowly.
While this is going on, I do not feel hunger, nor do I feel the urge to urinate. I am generally unable to eat, but I am able to force myself to drink water.
In 1996 and 1997 I had every test in the book done: MRI, EEG, EEG telemetry, even hormone testing, and they found nothing wrong. Actually, they thought I was faking The Thing. They didn’t believe a word I said, and treated me for Borderline Personality Disorder instead. This was at McLean Hospital, believe it or not. At one point, they took me off my antipsychotic medication, saying there was no need for it. That didn’t work out too well, so they put me back on it. I am thankful that this is 2011 and now people are taking me seriously.
I have tried to put a finger on it with no luck. First, I thought it was from bingeing. Back then, it only lasted for very brief periods, and I was more distressed over the bingeing and depression, and just thought that this new thing was a result of bingeing. Then, I thought it was from depression. I blamed the Trileptal, and had the entire dose moved to the nighttime, no luck. Then I blamed the Abilify and had that moved to nighttime, no luck. Then I thought it was caffeine. I did a day without caffeine–no luck. The nurse suggested it may be increased stimulation. Well, it is happening at home where there are no people to bother me. I give up. I cannot put a finger on any cause.
I called 911 yesterday. I called 911 many times in 1996 and 1997 because of The Thing. I do not know why I pushed the panic button yesterday and thought I was going to die. I was not having a panic attack. Maybe it was the confusion that did it.
This is probably unrelated: Suddenly, I no longer have double vision. This is weird because I had double vision, vertical diplopia, for ages. But I have had significant vision change and need to see the eye doctor right away because I can’t see out of my glasses. I saw the eye doctor last month and he said I needed new glasses, but I know there have been more changes since then. He referred me to an eye muscle specialist to see about the double vision. Guess I don’t need to make the appointment.
It took me 45 minutes to get dressed this morning. I think that it was just starting up then.
This tends to apply only to getting dressed and nothing else. I don’t know why getting dressed is so difficult for me.
I keep asking myself: How am I going to manage? In 1996-1997, I had Joe to help me out. It was really taxing on him, actually. He was literally picking me up from the floor sometimes. He drove me to appointments, took me grocery shopping, stayed with me overnight when I needed him, called doctors for me, even came with me to the emergency room a couple of times. Of course, those things–ending up on the floor, and having to go to the ER–aren’t going to happen, because now I have the Haldol, or whatever medication I use, but still, it is next to impossible to manage day-to-day things.
My priority, of course, is Puzzle. I seem to be able to do everything for her okay. It must be the human-dog bonding that enables this. See above. This is why it is essential that I stay out of the hospital, because I really need Puzzle, and she needs me.
There is so, so much more that I want to say, but I will leave off here.
I have been keeping an “It notebook,” which I will copy into my blog here (maybe I’ll edit a bit, not sure). I write it in pencil in an olive green 7×5 notebook. I write quite a bit about It.
Dr. P wants me to get a full neurological workup. She say It might be some form of simple partial seizure. She has also said it might be some weird form of depression. We don’t know yet. I’m seeing my primary care doctor Tuesday, and she will refer me to the staff neurologist. I will probably have an EEG. If it is a sleep-deprived EEG, then I am not looking forward to it.
I feel as though my life has really gone downhill because of It. I can no longer safely ride public transit (in Boston, we call it the “T”). I spend much of my days fighting this thing off. I can’t get anything done. I only discovered the “Puzzle cure” today. It took me from Monday, when I got out of the hospital, till yesterday, Saturday, before I was able to do laundry, vacuum, and even unpack my suitcase. I can no longer navigate in an airport, so airplane travel is impossible. I can’t walk more than ten minutes from home. Why? Because if It starts, I’ve got ten minutes before confusion sets in. I can’t walk Puzzle until It is over. I can’t use the stove to cook anything that takes more than ten minutes. That means lentils and eggs. Rice isn’t okay. I put in a bid for a rice cooker/vegetable steamer on ebay. Let’s see if I get it. And face my mother? Forget it. I can’t go grocery shopping right now until I get the handicapped transportation, which won’t be for another three weeks. I’ll have to use the local online delivery service. And sadly, I can no longer go to the gym–or run. At least I experienced the joy of one 5k.
It is identical to The Thing, which I experienced in 1996 and 1997. I called The Thing and Evil Being that lived in my head. No one believed me about The Thing. At least they believe me now about It, and are taking me seriously.
I do not know how long this will last. But I have this weird feeling that I’m in it for the long haul.