Sunday, October 04, 2015

frustration from cognitive impairment

Cognitive impairment is ruining my life.

I literally cannot read my textbooks. At all. This may sound like an exaggeration, but I am not exaggerating. I have been staring at this same book that I stared at last week, and none of it computes at all. It makes no sense. It doesn't register. Nothing goes into my brain and gets processed. I do not understand what I am looking at.

Frequently, lately, I have asked the world, "what is going on here?". That is the only thing that comes to mind to ask. I have no idea what is going on sometimes. What are we doing in class? What am I looking at in the pharmacy? What is going on at the intersection? Where am I going? What am I doing?

I have a horrible headache. The noise in this library was giving me a complete anxiety attack, and I immediately searched for the headphones. Luckily, there was a pair in my pocket and another pair in my purse, because I knew I'd need headphones. I downloaded Spotify on the library's computer to listen to music, because I told myself that I would be able to stay in this library, around these people, with all this noise, and somehow study, if there was music.

It is not working.

The music is playing. My brain is not working.

The lights are extremely bothersome. I cannot stand the bright lights in here. I hate bright lights. They give me a horrible headache.

I know this sounds like a litany of petty complaints.

I don't know how I am going to finish college like this. It seems entirely ludicrous. I cannot read. I haven't read anything in either one of my political science books. I don't know how I am going to manage to pass the exams.

This is a really horrible situation to be in. I hate this. All of these medications, and they cannot get my brain to work efficiently. Why? What is the problem? I fail to understand why my life has to be such a disaster.

I will write something better another time, when I have something better to say. Cognitive problems are extremely frustrating, and my arms are killing me, which is not helpful when you are trying to use a computer or read a book, so I am kind of not in a good mood.

I apologize for sounding so negative.

A few months ago, I thought I might go to graduate school. Now I cannot even manage to get through undergrad classes, and this is very upsetting to me.

Friday, October 02, 2015

Chronic, Physical Invisible Illnesses (Such as Autoimmune Diseases) and Mental Illness Co-Occurring...and how they can affect your life

I am at the Clearwater main public library. It's in a different building now, but it's the very same library where I worked when I was 19, when I became seriously physically ill. And it is serious, physical problems that I came here to write about today. I'm still computerless, so the only way I can blog or write anything much is by going to a library.

When I was 19, I worked here shelving books. I liked books. I liked to read books, even though my concentration was often poor. Then I became so debilitated by fatigue and widespread pain in my body, that I had to quit my job. I'll never forget it. I sat in my car, in the parking lot of this library swallowing over the counter stuff in a pathetic effort to ward off whatever was wrong with me. In vain, I searched through books in bookstores, thinking perhaps I had some cancer and I was dying. I had never been so sick before in my entire life. I did not realize, then, that you can become very ill with things that are not easy to identify on tests. Soon, I would learn the truth. Soon the doctors would start what doctors always do with people (and particularly women) who have vague, invisible illnesses that are not things that you die from as AIDS or cancer or heart disease, but are debilitating to the people nonetheless. I feel badly saying this, because I certainly am not trying to minimize what people go through who have fatal conditions, but very often, over the years, I've actually hoped it would be something that would be identified the way HIV and cancer can be identified, so I would, once and for all, finally know exactly what the hell was wrong. But at 19, the doctors started doing what they do with people like us, and that was to refer me elsewhere for more tests. Over, and over, and over. I have seen so many specialists in my life, I used to sit in the cafeterias of hospitals in my exhausted state, alone (since I've always dealt with all of this alone) and just cry. Because I was so tired of it all. I was tired of tests that always found either nothing, or just some odd things that could not be explained, and therefore were not deemed important.

At 19 or 20 I was diagnosed with Fibromyalgia. This is one of those diagnoses that, in the 1990's was considered "all in your head". As in, you're not really in pain, you just think you are. But I had never been in so much pain before in my life. I didn't even understand that a person could simply be expected to live with pain forever. I was sent to a rheumatologist, who told me to pretend from then on that I was 90 years old. I hated him for saying that to me. I hated the fact that anybody could think this was an acceptable goddamn situation to be as exhausted as I was (and as I am right now) and in pain, and just LIVE with it, because, well, there was nothing much they could do. They put me on antidepressants, of course.

Now, along with the "it's all in your head" diagnoses, which cause frequent discrimination from the primarily male, patriarchal medical profession against women with chronic illnesses who have no mental health diagnoses at all, bear in mind that I already had a mental health diagnosis. I had already had Major Depression and Anorexia diagnosed since I was a teenager, so you can imagine that when I had all sorts of physical complaints, but nothing showed up on the bloodwork, as nothing usually does with certain illnesses, I was not exactly treated with much respect. I learned to despise doctors. Quickly. And I still despise most of the doctors I've ever met, for the way they treated me. I only trust a couple of them now. Those are the primary ones treating me, all of whom have known me for years.The other day, I was sitting in my car, thinking about how I'd rather invite my rheumatologist, Dr. S-M and my psychiatrist, Dr. S. to my college graduation than have my parents there, because it is actually these doctors who were helpful in getting me through school, not either one of my parents who never did anything helpful at all. I trust these doctors, because they treat me with respect. They actually listen to me. They have both known me for years, so I think they realized a long time ago that I know what the hell I'm talking about when it comes to my body. And they don't dismiss it.

Dr. S.-M. has been my doctor now for about 9 years. I should have called her immediately when I began to feel horribly sick a few weeks ago, but I didn't. The reason I didn't is that sometimes it's hard to tell the difference between the psychiatric and the physical, even for me, so I went to my psychiatrist instead. I told him I was horribly depressed. You may have noticed, in the writings here recently, that I have been horribly depressed. However, there is much more to the story than that. My rheumatologist is the doctor who diagnosed me with Lupus, but even now I doubt sometimes whether she was correct. I know she is probably correct, for a zillion reasons, namely all of the symptoms I've been dealing with for 21 years, and for the fact that I've had stuff show up on my bloodwork from time to time that actually does show an autoimmune disease, and for the fact that last year, while I was locked up in the psychiatric hospital for a month, I developed the tell-tale butterfly rash, which is the hallmark sign of Lupus (SLE). I had never had that rash much before, but in the hospital, when we'd go out on "smoke breaks" so people could inhale nicotene, I'd go out into the courtyard with them just to get some "air" (smoke-contaminated air was the only kind available). What I also got was sun, so every time we came back inside, after merely ten minutes, I had a rash on my face. People pointed it out to me before I even noticed it myself. I also got a weird rash on my legs. Of course. being that I was inconveniently located inside the confines of a mental hospital, I could not see my rheumatologist to show her these rashes, and if I had been able to show her, she probably would have known what he hell was going on a lot more than the "medical doctor" I got to see for five seconds inside the psych hospital.

A few days ago, I got into my rheumatologist's office. I had an appointment with her nurse practitioner, who was somebody I'd never met, because the doctor was unavailable for a couple months. I didn't want to see this nurse practitioner, because, like I said, I don't like most doctors. History tends to repeat itself. I lost count years ago of how many times condescending doctors had talked to me as if it was "all in my head" when they were completely wrong. It kind of pisses me off now. A lot. So the first thing I did while waiting for her was write down my symptoms. I didn't intend to waste my time with this person. I intended for her to do something to help. She came in and I said, "Hi, I don't know your name, but I've been seeing Dr. S-M. for many years. Here are my symptoms right now." I read this list: Fatigue (profound and debilitating), weakness, losing sensation in my legs/feet (numbness) - neuropathy worse with frozen face, arms and legs, cognitive impairment MUCH worse, dry eyes worse, dry throat, shakiness, pain in joints worse, knees, in bed most of the time for five weeks, and depression.

She proceeded to try to tell my how my bloodwork from last month didn't show a lot of abnormalities on it, so I cut her right off. I told her my bloodwork never shows a lot of abnormalities, that Dr. S-M. treats me based on the symptoms I've been dealing with for half my life, that I am in my final semester of college and cannot read at all, that I'm having trouble getting to work for a 15-hour a week job because I'm so exhausted, and that I wanted to know what my thyroid levels were. She told me my TSH (thyroid) was a little low. This was not surprising news. She also said that she didn't think I needed my thyroid medication increased. This was clearly dumb. But then, she seemed to come to the realization that she was out of her league, and said, "I think you and I would both feel better if I brought Dr. S.-M. in, since she has known you for so long". Yes, I said, I think you're right.

By the time Dr. S-M. came in, I was so out of it, I didn't notice she was in the room. She said she heard I had some questions. I said, "Well, actually, I think she has some questions for you because she does not know what to do". Hours later, I realized this probably sounded rather rude, but in my state of foggy thinking, all sense of nuance is sometimes lost. I don't have the energy to waste constantly worrying about the appropriate way to say things these days. I keep blurting out things that other people probably think of as inappropriate. During this conversation with Dr. S-M. she laughed when I reminded her that the cardiologist she sent me to last year had "couldn't find anything, so he told me I was fine", even though I had gone there for chest pains. Apparently saying this point-blank sounded funny. It was just a statement of fact, since that's exactly what happened with the cardiologist. When I met him, and I happened to know the name of a "poor man's tilt test", which is a medical slang term used for taking the patient's blood pressure lying down, sitting, and standing up, he said to me, "Oh, you're a professional!" as in, "you're a professional patient, because you like to be sick and go to doctors all of the time." That's only the most insulting thing a doctor can say to a person who's been chronically sick half their life, but I guess it wasn't supposed to offend me.

Anyway, Dr. S.M. seemed to be testing my memory, since I complained that I cannot think, and that it is nearly impossible for me to get through school now. She asked me how much Synthroid I'm taking (that's one of my thyroid pills), and I told her. She asked me how often I'm taking it. "Once". A few minutes later, "And how often are you taking Synthroid?" I couldn't remember. I guess I failed the test. She looked at the nurse practitioner, who was still trying to figure out how to find my medications on the computer, or something, and said, "OK, so here we have chronic pain, new neurological symptoms, fatigue, and cognitive impairment. This justifies a neurological work up". Apparently that idea had not occurred to the nurse practitioner before. I don't know why. This is pretty rudimentary stuff. I have been through all this crap before.

This will be the fourth neurologist I remember seeing in my life. I could be wrong. It could be the fifth one. I'm not sure what I might have forgotten from my 20's. The first one I remember was in Virginia, when I was manic and psychotic, and trying very hard to keep my psychiatric problems under wraps. They did some tests and determined I had a "vestibular disorder" and should wear some stupid patch for motion sickness every day for the rest of my life, even though it did nothing to help. I didn't bother. They did a sleep study and never figured out why I went days without sleeping, because during the sleep study, of course, I fell asleep. The next time I went to a neurologist was when I referred myself to the Mayo Clinic in Jacksonville, and they did a huge work up of tests that involved having to get my mother to drive there with me and stay in a hotel with me overnight, which in and of itself was as nightmare for my brain. That doctor was an incredibly condescending asshole, but he did figure out that I had peripheral neuropathy in my leg, which is the only explanation I've ever been given for why my legs and arms (and now my face) go numb and tingly and lose sensation and feel weird. If you've ever had your foot fall asleep, imagine what that is like if it is both of your legs, and your arms and your face falling asleep, all at once. That is how it feels. I don't know how else to describe it. This is a neurological problem, obviously, which they determined was there with a fun thing called a nerve conduction test that involves shocking your skin repeatedly for hours, to see how your nerves react. I was actually glad that one of their tests came back showing something abnormal, especially considering that the neurologist lectured me on how there was nothing wrong with me at all, while telling me about this test being abnormal and that I needed to take medication for neuropathy (like I said, condescending assholes abound). He suggested that I go to a rheumatologist at the Mayo Clinic to get another complete work-up by THEM, since I was unsatisfied with the way he was dismissing me. I said no thanks. I was done with that place. I was especially done with having to sit with my mother for four hours in a car to get there. So I never went back. I just stuck with Dr. S.-M. ever since. When she refers me to people, I go to see them. Another neurologist I saw was sometime a few years ago, in Clearwater. I have no idea what his name was now, nor do I care, as I quickly realized he was a complete quack. He wanted me to use some cream on my skin that was supposed to fix all manner of neurological problems, and yet the only evidence I knew that this cream did anything was a book he himself had written, which they sold in his office. I didn't bother with him for long. I haven't been to another neurologist since him. I see no point, but I also know that if I have had M.S. this entire time, it would be a helpful thing to find out, and, additionally, I am diagnosed with Lupus, and Lupus can affect the brain. One of my cousins has Lupus in her brain. It causes her to have seizures and all sorts of other problems. I asked Dr. S-M if she thinks Lupus is affecting my brain. She said, "I'm not going to say no, but I don't think so. We just have to have you checked out." Ok. So, at the end of the month, I'm seeing another neurologist. This one is female, so it's a good thing Dr. S-M. recommended her, because male doctors have, historically, always been worse towards me than female ones.

As I was filling out this form I had to send to get an appointment with the neurologist, I had to list all my medications. If you count vitamins and supplements, plus prescriptions, I'm ingesting 22 of them every day. 22 substances, and who knows what the hell any of them are actually doing? Some of them I take four times a day, and I wouldn't be able to keep up with any of this if it weren't for the fact I have a pharmacy prepackage most of them so I don't have to keep track of all the bottles anymore. I've had to revolve my entire life around pills for the past 21 years. I'm not kidding. Literally, the first thing I think about when I wake up and the last thing I do at night, is swallowing pills. It has always been this way. I wish there was a better way, but I don't know of one.

What bothers me the most is the cognitive problems. I can't tell you how many books there have been in my life that I couldn't read. I could never count that high. Many, many books. I was an English major when I was younger, and the main reason I decided to drop it was that I could not read literature, which is kind of necessary to be able to do as an English major. I don't even think about this kind of thing anymore; it is just a fact of life for me. But then there are times when it is worse, and I cannot read any bits at all of a textbook, so it's pretty darn hard to get through college. I know how to bluff my way through by writing good papers, because no matter what is wrong with my brain, I'm usually still able to write papers, but some things cannot be faked, so school gets really hard at times like write now. As I told my doctor, I don't know how I'm supposed to finish school like this. She said she doesn't want me to give up. I don't want to give up either, but it is really hard to function right now. I mean, I literally cannot stand up long enough to do the dishes. I can't physically do it. I have no one to help me with that. So the dishes are simply not getting done. I almost fell over when I was buying food in a cafe at work the other day. This guy asked me if I was okay, because he thought I was passing out. I made up something about having low blood sugar, although actually I don't have low blood sugar. So Dr. S.M. said she was going to give me a shot of B-12 and a steroid that I've had before a bunch of times (when, I don't remember), and put me on a form of prednisone, and she agreed with me that my thyroid medication should be adjusted. I suddenly remembered our conversation a month before, when I was feeling better, and I'd asked her if she would put me on Armour Thyroid. She had said she would if my thyroid levels turned out to be low, and my thyroid levels did turn out to be low. So she is putting me on Armour Thyroid now, probably mostly just to humor me because at this point I'm desperate. She then said, "I'm going to prescribe something else now that will sound a little odd. I want you to watch 60 minutes of comedy per day." She said this would increase my endorphin levels. I didn't have the energy to argue with her about this being pointless so I said I'd do it. Then, I went on Facebook and asked people to recommend comedy videos, since they had been prescribed by my rheumatologist. People recommended a whole bunch of them. I watched a few of them.

Most of the time, I don't talk about being chronically ill with people. Most people who know me do not even know I have Lupus or Sjogren's Syndrome. Most people do not even know what Sjogren's Syndrome is, and are not very familiar with Lupus. I almost never tell people about Fibromyaglia, since it's the least of my problems. But the fact is, that these things, and hypothyroidism are real problems that cause all kinds of symptoms. The fact is that, since I was 19, I've been dealing with doctors and tests and medications all of the time and constantly having to struggle just to get through the day. And the fact is that when you are diagnosed with a serious mental illness like Schizoaffective Disorder, almost no one ever takes your physical health seriously again. The National Institutes of Mental Health found in research that people with Schizophrenia die 25 years early, on average. I attribute this to the physical health of people who are psychotic never being taken seriously, not only because when we're psychotic we're too sick to take care of ourselves, but also because the patriarchal medical establishment minimizes the fact that we are even human beings at all. How can our lives matter much if we're subhuman? And that's how we get treated, like subhuman beings. Once it's in your head, it's ALL in your head. Every thing that ever goes wrong with your body stops mattering if you're considered crazy. All that matters is that you don't matter at all. I have a guy I know through NAMI who has spent the past 15 years or more talking publicly about having Paranoid Schizophrenia, only to find out last year he also has M.S. I'm going to take a wild guess here and say that he probably had M.S. the entire time, but when you waste your life away in the community mental health system, nobody fucking cares if you have M.S. That is what bothers me right now. Nobody cares.

By nobody, I include my entire family. I have one family member who understands that I have actual physical problems, and she's a cousin in Baltimore, who I haven't seen in years, who has Lupus herself (the one with it affecting her brain). Nobody else cares, least of all my mother. My mother is an incredibly self-centered human being. She believes the entire world revolves around her, and that other people only exist in order to make her happy or to make her miserable. That is all other people are for, in her world. So recently, she has been calling me, as usual, because she wants me to cheer her up or do things with her. She calls me for this while I'm lying in bed with no energy at all in severe physical pain that nobody cares about. So do I want to cheer her up? Not really, no. I'm not exactly in the mood for that shit anymore. I have no energy to even converse with her and deal with crap at all. So I don't bother. I just hang up on her. She refuses to even pretend to care how I'm doing, except insofar as it is affiliated with her day and whether or not I'm going to get up and go to the movies with her with no energy to even get into the shower. I do not want to go to the movies with her, ever, but when I have more energy, I do go, quite frequently. I do it because she has no one else in her life who will spend any time with her at all, as she is a completely antisocial human being who has alienated every single human being with whom she has ever had contact. So she relies on me for everything. My brother wouldn't spend time with her unless someone paid him to. My sister moved 1,000 miles away, primarily to get away from her. So she relies on me for everything. And, most of the time, I do what she wants. I go to her damn house, and I hang out with her, and I go to the movies with her. But not now. Now, I can't even take a shower most days, so I'm hardly going to drag myself into my car, drive 20 minutes, and put on a goddamn happy face for this woman who denies the reality of my existence, which is the fact that I've been sick for 21 years with things she believes I make up for my personal enjoyment because I like to feel sorry for myself. That is actually what she has always said. She has always said that I am a hypochondriac. She doesn't care what my rheumatologist or any other doctor has to say about it. She is a registered nurse, but that doesn't matter here either, because she doesn't even know what Lupus is. She just decided when I was 19 that I "made up" being sick, because really, I was just a lazy slob who wanted to lie in bed all day. That is what she always said, and what she still chooses to believe. You see, the reality of me having legitimate health problems doesn't fit into her world view, where the only things that matter are the things that revolve around HER. Since my health problems involve me, and not her, they don't exist. To admit they exist would mean that I am an actual human being whose life actually matters. And she is constitutionally incapable of doing that.

So, what do you do when your own mother tells everyone, and successfully convinces everyone in your family, that you are a hypochondriac? You stop talking about your health. That is what you do. You don't mention it anymore, because if you do, nobody is going to believe you. Compound this with the treatment I've gotten from the male medical profession over the years, and you can imagine what little desire I might have to tell people that I have any chronic, invisible diseases at all. I never usually tell people at all. I just don't bother anymore. If I do tell them, I always get the impression they think I am making it up, perhaps because of past experience. So it's just easier not to even bother.

I'm not sure why other human beings have such difficulty grasping the fact that a person can have a serious mental illness and also serious physical problems at the same time. I mentioned to my friend, L., today at her house that when you're diagnosed with mental illness nobody takes your physical health seriously. She used to be a therapist, and she told me she agrees with me. Apparently, I had never mentioned having Lupus to her before today, but like I said, I don't mention it much at all to anyone. It's really not remotely unusual for physical and mental problems to occur at the same time, in the same person. It's actually quite common. Back in 2012, at a NAMI conference, a researcher discussed the link between autoimmune diseases and serious mental illnesses. I went up to ask her afterwards if it was common to have both at the same time. She told me that if you have Bipolar Disorder, Schizoaffective Disorder, or Schizophrenia, your chances of having autoimmune diseases run in your family are always higher than if you do not. Autoimmune diseases happen to run in both sides of my family. My cousin with Lupus is on my dad's side. My uncle, who is one of my mother's brothers, has a different autoimmune disease (again, nobody ever talks about it). This is probably not a coincidence. Probably, in the future, you will be able to tell things like this to doctors and have them understand its significance. But right now, you can't. The researcher I spoke to did, however, tell me that a lot more research is being done in this area. I asked my psychiatrist about it last year. He said he didn't know anything about the connection between autoimmune diseases and mental illnesses, but told me that I should research it myself and then explain it to him.He's a good psychiatrist, but he sees tons of patients and does not have time to read much research.

It would be interesting to know what the connection is, but I guess, in the long run, it might not really matter, since none of these things have cures.

But it gets hard going through all this stuff by yourself. I have not one, single person in my family who cares how I am. My therapist and I talk about how I have to take care of myself and find other people to care about me, because I obviously never had a caring mother. There is J., from NAMI, who is an older woman (she's in her 70's, and my mom is 59), and I told her the other day in an email that she is more caring towards me than my own mother is. She at least understands mental illness, and devotes her life to helping people with mental illness. Tomorrow, J. and her husband are taking me out to lunch. I think after I told her that they are more caring than my own parents, she felt it was necessary to get together with me and get me out of my apartment, which is very nice of them.

Another thing that happened this week was that the frustration at school came to an embarrassing head. I went to see my statistics professor during her office hours Tuesday, to get help with her class. There were other people there who needed help too. This one guy likes to commiserate with me about how horrible the class is. I don't know what's wrong with his brain; maybe statistics is just hard even if your brain is fine. The professor said to me that I am doing well in her class. Since no one else was around when she said this, I told her that this was only because she had let me take the test at home. I have not asked her to let me take more tests at home, because I don't really want to ask for that since it would sound like a request for a special favor. Then, later that day in her class, I was confused. She was doing this thing, going around the room, where people counted off by number for what group they were going to be in for a group exercise. If you were number 1, then you were in group 1, etc. So everyone was saying their numbers. She got to me, and I looked at her, stupidly, and said, "What are we doing?" I felt like an idiot, and other people looked at me like I was intellectually deficient. Actually, throughout that class, people kept looking at me that way. So after the class, she told me to stay and talk to her since I was confused about something. It was 9 PM, and I didn't feel like keeping her there to explain things for me, but she did. After she explained it, I still didn't understand it at all. I looked at her and said, "I'm not a stupid person." She said, "I know you're not." I said, "But I cannot read books right now,'s really embarrassing." These words came out in a whisper. And then tears started rolling down my face. She said, "You don't have to be embarrassed, Jennifer. Not with me, anyway. Just get better. Just get well." I nodded and headed out the door. It was completely humiliating. I don't exactly walk around crying at the university most of the time. The only other time I remember crying there was another semester when my brain wasn't working, and I was trying to explain what was happening to the man who runs the office of services for students with disabilities. He handed me a box of Kleenex. It was very embarrassing.

As I explained to my therapist yesterday, the thing is that when your intelligence is the only thing you value about yourself, it is REALLY hard to deal with when you're brain doesn't work. She looked at me, smiled and did a "Mmmhhmmm" as if this was some big revelation. She told me that this was a very good thing for me to realize, because nobody should value themselves only for their intelligence, or for any other single thing, that we should all value ourselves simply for being who we are. I'm not really sure how you go about doing that. Society doesn't value people for who they are. Society values you for your accomplishments. In my life, the only accomplishments I've had were grades in school. I learned from an early age that teachers saw more value in me than my parents ever would. So I tried to impress teachers. I guess I still do that. I think if I do well in school, then somehow this makes me a worthwhile human being. I'm not sure why I think this really, and it does seem pretty silly. After all, the university I go to is not even a difficult school in the first place, so it's not like it's that hard to do well there. Probably anyone could get A's in all their classes there, so it doesn't really mean that much. But for me, it has always been a big deal. Also, I think it's hard to NOT feel stupid when you look at a book, and all you see is a jumble of letters on a page, and you do not know what any of it means, and there is technically nothing wrong with your intelligence. I mean, what explains that, exactly? I have no idea. This has been a part of my life for a very long time. When I was about 21, a psychiatrist told me I had Attention Deficit Disorder and that explained it. He put me on Ritalin, which I didn't take for long. Now, my doctor has me on Adderal, and I don't even know exactly why, other that his hope that it will help me get through school. When I don't take it, I can't even crawl of body, so, if nothing else, it's helping me make it to school physically, even if not there mentally. Dr. S.M. said I can just stop taking it if I want, since I told her my cognitive problems upset me more than anything and I don't think this drug is going to help them. But I don't know. I might be worse without it. I'm on the lowest possible dosage you can take, regardless.

Right now, I'm just trying to do what I can do. Today, I went to my friend's house to go in her pool. I like being around feminists who are older than me. We have intelligent conversations. It makes me feel like my brain still works a little bit, if I can manage even a little bit of that. Tomorrow I'm going to lunch on the beach with the J. and her husband. J. wants to see if we can find some "eye candy". She always teases me that I need to hook up with one of the eighty-year-old men at the YMCA, because I told her those are the only guys who hit on me, and she thinks it would be wise to find out if any of them have cardiac problems and also own property. It's funny coming from her, because she's almost as old as they are. (In reality the last thing on earth I actually care about is probably being hit on by some stupid man). I haven't gone to the YMCA in over a month, because I haven't had enough energy to do exercise. It's unfortunate, because I had lost a ton of weight and I don't want to gain it back, but that's not really one's biggest concern when one feels sick. What I'm not doing right now is revolving my life around my mother. The other day, when I was at school, she called me to announce that she had gotten a new job and she needed a favor from me. She wanted me to take care of her dog. Meanwhile, when I'm lying in bed and can't manage any housework, she is of no help to me at all and does not care about it. So I said, "Nope. I can do nothing for you. Ask my brother." He owes her favors. I do not. I am not doing a damn thing. I then hung up on her. Afterwards, I got angry and sent her a text. I said, "Do not contact me again. Your are under the delusion that I exist to make you happy. News flash: my life does not revolve around you. I have been in bed for five weeks and you have done nothing to help me." Of course, she did contact me again. And again, and again. Every day. She called me this morning at 8 AM, for no reason. I hung up on her. She called me again, two hours later, and wanted to borrow clothes from me. I hung up on her again. I have no room in my life for her nonsense. I don't have the energy or the inclination to put up with it at all.

I'm glad there are other people I know who are more logical and sane and kind than my mother is. I can talk to those people. Last week, I told you I was going to my friend's house for dinner and to do my laundry there. That was nice. She and her husband helped get my mind off things. She is a good friend. I needed to be around a friend. She has two dogs, and one of them is a new puppy she just adopted, my first niece whose name is Abby. I'll write her name on here because Abby is probably not likely to read this and get offended that I put her name on a mental illness blog. My mom told me several times after that day that she was mad at me for going to my friend's house, rather than spending time with my mother like I usually do every single weekend of my life. This is par for the course with my mom. If I have a friend, she is jealous. If I have a life, she is jealous. My world is supposed to revolve around her. So I repeatedly told myself that I have absolutely nothing at all to feel guilty about here. I told myself that I have every right to have friends, and every right to go to my friend's house, and there is no reason on earth why a 40 year old woman should spend time with nobody other than her mother. That is just ridiculous, that she actually expects me to live that way. I don't owe her anything. I've already given that woman everything I have to give. I am done with that. It isn't my fault that she can't deal with anything outside herself. It isn't my fault she will not go to therapy, even though I've been telling her for many years she really needs to and it would help her. It isn't my fault that she has no friends at all. That is her fault. That is not my fault. Other people do not put up with her, and her bullshit, so why the hell do I put up with it? It makes no sense. I'm tired of feeling guilty every time my mother wants me to do something and I do not do it. I'm tired of being blamed for her misery, all of my life. She is not my problem to solve. She can fix her problems herself.

There's an interesting dynamic that goes on in families like mine, where more than one person has a mental illness. My mother has Bipolar Disorder. My sister, for a while, was also being treated for Bipolar Disorder. My mother, my brother, and my father, and my sister, are all alcoholics. My mother and my brother are in recovery via the 12 steps. My sister simply doesn't drink anymore. My dad gets drunk every day and always has. That is how they all cope. My half-sister, who I never lived with, is also an alcoholic. My half-brother, who is a teenager, and me are evidently the only people in my immediate family who are not alcoholics, unless you count non-blood relatives like my stepmother and her daughters. In other words, the mental illness and substance abuse runs deep in my family. Both my grandfathers were alcoholics. My grandfather's sister committed suicide when she was 19 years old. It is a taboo subject in my family to this very day, even though it happened when my grandfather was 11 years old, and now he's in his 80's. What's interesting that happens in families like this is that you are left to fend for yourself. There were a lot of phrases my dad used repeatedly when I was growing up. One of them was, "It's every man for himself!". And that is how it was, and still is, in my family. Everybody has to find for her/himself. In other people's families, like people I've known through NAMI, sometimes a person has a mental illness and the parents devote themselves to helping her. The parents join NAMI, and they also become advocates and look up information all the time on mental health. But for many people, this is not reality at all. We don't have parents like that. We just have parents who are sick, and unavailable to help in any way. My parents, like I've said recently, never had any business being parents. So, basically, I raised my mother, who was out of her mind, and as the oldest kid, it was my job to take care of my brother and sister. It was also my job to take care of myself. I guess some sad part of me still wishes she had a mother who would take care of her. That is really kind of silly, I know. But I guess old dreams die hard. Nonetheless, I realize I'll never have that kind of mother, or one of those NAMI families where the parents care so much. I'll never have that. I'll never have parents who it would matter to if I'm going through more stupid medical tests. I've never had parents who were there for any of those tests. I've been through all of that stuff all by myself. I've dragged myself, alone, to every single doctor's office I've been to. And so did my sister, who has epilepsy. Do you think our parents cared, when she was a teenager having seizures? Nope. They didn't care at all. She took herself to neurologists, just like I took myself. It's every woman for herself. My dad got that right.

Here is a post I wrote about autoimmune conditions and mental health a year ago.

Here is a post about Fibromyalgia from three years ago.

Here is Lupus and Rheumatoid Arthritis (feeling sick from something forever and not knowing what it is). from 2011, before my doctor had told me "you definitely have Lupus".

Here, I nonchalantly mentioned having the Lupus rash while in the hospital last year.

Here is a post I wrote for Invisible Illness Awareness Week in 2011, called 30 Things I Want People to Know.

Here is a post on parallel forms of oppression and internalized shame, from 2010, where I discuss mistreatment by the medical establishment.

Thanks for reading! I read all the comments and appreciate them.

Sunday, September 27, 2015

Trying to focus on the positive things

I apologize for my last post sounding like I was in a rage against the world. I'm  normally like that. I don't normal say "f-this" every single second like that, so if that was the first thing you ever read here, I do apologize.

I'm trying to think of the things that I'm grateful for, for right now. I've come to some realizations about that. I mentioned that I had talked to a person from NAMI the other day who runs a support group, and I didn't say that it was helpful, but it's always helpful when I'm like the way I've been lately and someone knows me well enough to ask, "Are you going to the Skyway?" even though we're not really friends. This is someone I've known for years who teaches Crisis Intervention Team trainings for law enforcement officers with me. The Skyway is a bridge where I tried to drive a car over a guardrail (it's 250 feet high) in 2004, and she's heard me tell that story to the police. Lately, I've been thinking a lot about the Skyway, per usual with me when I get into a depression. So I told her, no I'm not going there, just thinking about it. I mention this because there is a difference between now and 2004, in that I am not acutely psychotic right now. If I was, then chances are I would have already been to the Skyway by today, and jumped. The reason that has not happened is that, even though I'm in a bad depression, and not well physically, I have control over what I'm doing, and I'm not held captive by voices and visual hallucinations 24 hours a day. That was not the case in 2004, hence my mom's totaled car.

I'm also grateful for my psychiatrist. In 2005, I met this doctor at a hospital called Morton Plant. I'd been in and out of that hospital several times before, and had been released no better when I left  than I'd been when I'd gone in. This time, that was not to be the case. I was thinking about this yesterday, and why this was not the case. One reason was that I almost shot myself. When you have a loaded .357 Magnum on your person, and the police are called, obviously, this changes the circumstances of how you are viewed in the hospital. Another thing that affected this hospitalization as my recording cassette tapes, whilst driving around psychotic, which I left for people to find, along with the gifts and letters for my family members. I had recorded myself saying some really bizarre things, such as, "I ought to kill (insert name of high level government official here) rather than myself!" Yep. I can't even write the person's name because, you see, that would be highly incriminating to type on the internet, and I'm just pretty darn lucky my doctor did not alert the FBI to these cassette tapes. This is not paranoia talking. As you can read about in the book Surviving Schizophrenia, when people who are psychotic say things about killing specific high level government officials of a certain variety in the U.S., sometimes the FBI tales them for the rest of their lives, even coming to question them within the confines of state hospitals. Thank you, Dr. S., for not calling the F.B.I. I believe there is also a statement on those cassette tapes or two about me  being Jesus Christ and about to be crucified. So, yes, I was clearly insane. If you don't believe me, simply read what I wrote at the time. It's some bizarre stuff. I went rambling about things like string theory and quantum physics here and being Anne Frank here. Oddly, when I created this blog, I actually had no idea I was psychotic. I called myself "beautiful mind, complex life" without having any idea what exactly I had in common with John Nash. I just thought he was a CIA agent like me. I couldn't make this stuff up if I tried! (Note: If you haven't seen the movie A Beautiful Mind, you probably should. It is the movie Dr. S. had me watch in the hospital after he diagnosed me with Paranoid Schizophrenia, which diagnosis would only later be changed to Schizoaffective Disorder).

I didn't continue to see Dr. S. after that hospitalization, because I got into the community mental health system, for better or worse, for a number of years. I only went back to see him on an outpatient basis a couple of years ago. I'm glad I did. He's much better than most of the doctors in the local community mental health system with whom I had contact, with one exception. He listens to me. He takes me seriously, and he knows that I know myself.

Another person I'm grateful for is my best friend K., who I mentioned the other day too. She contacted me last night to tell me she wanted me to come over her house for dinner with her and her husband today. She said, "You can either come yourself, or I'm coming to your apartment to drag you out." She's not the type of person who takes crap from people. Just ask my cat, Ribbit. Once he bit her, and he got repayed by a spray bottle she purchased in order to spray him in the face (I still think this is abusive and won't do it to him myself). She called me today and asked whether I was going to show up, or if she was going to have to show up at my place and drag me out. It is actually really nice to have someone who cares enough to do this. I don't know anybody else who would bother. So I am going to her house now, and I am going to do my laundry there so I have some actual, clean clothing to wear to work this week.

I'm at the library now. I had to do my statistics homework. I didn't understand much of it, but I tried. I emailed the professor  for help. She's been understanding so far. I asked her to help me with the homework questions, and told her the answers I had for the confusing ones, to see if I am doing them right at all. She let me take my exam home with me, and actually do it on my own, which was amazingly kind of her. I am grateful for that, too, because if she hadn't done that, there is no way I would have gotten a decent grade. I got a really low A, but it was still an A.

Last Tuesday, during my statistics class, I was having trouble breathing. I was having a panic attack, sort of. I kept thinking I was going to leave and drive to the bridge, because this confusing class, and all these confusing numbers on this overhead screen were stressing me out so much, and I just couldn't take it anymore. I envisioned myself  getting up, and interrupting her lecture to tell her that I needed her to call the police and ask for a C.I.T. officer to take me to the hospital. Then I told myself this was stupid, because I just really needed to go home, take my meds, and go to bed. I knew that I needed to do that, because I was exhausted. For some reason, I couldn't move, as my anxiety was so bad. I couldn't decide to get up and walk out and go home, as I kept thinking, "this class is almost over...." but it never ended, it seemed. Finally, when it was over, I was so glad to just get the heck out of there! It was a total nightmare.

I've come to the realization that I clearly need to see my rheumatologist, because my Lupus and Sjogren's are flaring up badly, and that is why I am extremely exhausted. This is not just fatigue from depression; this is profound, physical fatigue. My mother called yesterday and said, "oh you're just depressed". I hung up on her. I don't have the energy to waste on her nonsense. For 21 years, I've been physically sick and she's acted like there is nothing wrong, because she doesn't care to understand anything about invisible illnesses. I have been dealing with being sick and having my whole family deny it since I was 19 years old. It has gotten really old. So I don't need to talk to my mom today. A lot of times, I'm better off not talking with her at all.

I'm going to my friend's house to do my laundry now.

Friday, September 25, 2015

The month from hell: warning there will be excessive anger and misery here

Warning, there is probably going to be a lot of anger, complaining, and misery in what I am about to write. I need to vent. If you came here looking for encouragement, please see some of the other posts, when I was feeling a lot better, like a month ago, for example.

This has seriously been one of the worst months I've had in recent memory. It really feels right now like everything that possibly could go wrong is simply going wrong and is happening at once. I cannot even understand it anymore. I was doing fine, and everything was working fine, and then my brain just (sorry, I have to curse), fucking splattered on me all over the goddamn place and went into complete and utter non-functioning mode. AS IF I NEEDED THAT RIGHT NOW. I mean, this crap always happens to me at the WORST possible moments, it seems. I suppose there's no good time for it to happen, I suppose that sounds idiotic to think there is, but if there was a time when I had to go into a state of suicidal despair, probably my final semester in college after 20 years of trying to earn a goddamn, little bachelor's degree is not the ideal fucking time.

To top that off, when I finally crawled my way out of bed last weekend, at around 6:30 PM, after having been completely immobile other than looking at my stupid, fucking phone to see what some strangers I do not even know on Facebook might have to say about things, as if that ever really fucking matters in life, I managed to be mobile enough to get in my car, in search of food. Yeah, because that's where I'm at, at the point where I don't eat unless I get hungry and come to the amazing realization that I have not managed to force my ass into a grocery store in a long fucking time. So I get into the car, and I get driving, just like a normal person, at a normal rate of speed, on a road I drive on every fucking day of my life and have for the past nine years of my life, and what happens? I get pulled over by a cop. Here I am, in the state where your mind is so dysfunctional that your fear is you will literally never make it out of your bed until the cops show up to drag your ass to the fucking hospital, which is a fear I have literally lived with now for many years, and what happens? I get pulled over for SPEEDING. Fucking speeding whilst barely breathing at all. And the cop then notices that, being the obviously brilliant person that I am, I managed to completely FORGET to renew my vehicle registration, nine fucking months ago. So I guess I should be grateful he did not drag my apathetic ass to jail, but at the time, all I did was sit there as if it did not matter at all. Well, unfortunately, it does kind of matter, since it costs an incredible amount of money that I do not really have.

But did he notice that I looked basically catatonic and drag me off to the psych ward? Nope. Because people never fucking notice this shit with me. I do not know what it is, but my friend K. (she is my best friend) said yesterday that it is because "you don't look mentally ill". This was said in reference to my job, where people do not really know much at all about the sad state of affairs that is my life. Because, as I told her, it's kind of hard when your boss asks you what you are going to do when you graduate, and if you have applied to grad school programs yet, and you have no way to explain the inconvenient fact that you couldn't even get yourself into the fucking shower that morning, because you are too goddamn depressed to function at all, much less go to fucking grad school as if that were actually within the realm of human possibilities. Seriously. People do not understand me at all. Literally about two people on this planet actually know me. That is it. I don't even think that you can know what I'm like from reading this blog, sorry to say. It doesn't really touch on how completely chaotic my brain is. I don't even know how to put some things into words, and the only way I know how to COPE AT ALL is by writing about it. Which brings me to another point. The only friend I've known for a really long time is a former professor who I have written to for the past 20 years. I have literally been nothing but an annoyance to this person, I'm sure, for that majority of that time. I have no idea why this person even still speaks to me at all in the first place, other than perhaps poor judgment. But the only reason, the absolute single only reason, that I even have any friend I've known that long at all, is because we communicate primarily through writing, and he's a writer, and writing is the only way I know how to communicate with other humans, really. I do not KNOW HOW to socialize with people, most of the time. I actually never have at all, in my entire life.

That right there is what I intended to write about when I woke up this morning: my inability to socialize and make friends with people. I have written about this before, but it has not been stated very often. This is the most glaring place where my abnormal brain is evident in life. I literally have never, in my entire life, known how to make friends. I'm not lying. I'm not exaggerating. It takes so much fucking effort to even try to be friends with someone, because I find people so completely terrifying, that two times this week, I've said to people that other humans frighten me, but cats don't frighten me. Two times. I just blurted that out at work the other day. I don't know why. We were talking about cats, so it seemed somehow relevant at the time. I think people thought I was joking, but I was not fucking joking at all. People totally terrify me.

This is what I wanted to write about this morning. My best childhood friend, Lindy, was my best friend from the time I was six years old until we were teenagers. We grew apart because Lindy is a religious zealot (read: total fanatic for Jesus) and I am not, so things started to seem somehow incongruent when I left church. It took a lot for me to leave church, by the way. I grew up being indoctrinated in Christian school and church, and it took a lot to leave of my own accord at 15 or 16 years old, by simply refusing to ever go back. Lindy does not understand things like that, and she now home schools the five kids God wanted her to have in a house in the boonies because that is what people do when they are good Christian women and God doesn't want them to do anything other than that. I know, this sounds mean. I feel really angry right now, and for that I apologize. But I don't apologize for not liking Lindy anymore. What happened to us was that, when I was 23 and living with my grandparents in Baltimore because neither one of my parents actually should have ever been parents at all, and I was sick, physically and mentally, Lindy was getting married. She wanted me to be her Maid of Honor. Which is flattering, normally, but at the time didn't really mean much because I was in my first psychotic episode. I was so paranoid and delusional, I had come to believe that my dad and my grandfather had been raping me for my entire life and that somehow, some way, I had blocked out the memories, and I was walking around with multiple personalities from Dissociative Identity Disorder. I had managed to find and idiotic therapist, no sorry, I managed to find THREE idiotic therapists, who were big believers in repressed memories, and who did not fucking know how to recognize clear and blatant PSYCHOSIS when it was in front of their faces. So they really did a wonder on my life. In other words, these people helped destroy my fucking life for the following ten years or so. It was just fantastic mental health treatment, let me tell you. I could write a book on this subject alone.

Anyway, whilst Lindy was planning her wedding, do you know what I was doing, while she wanted me to drive to Florida from Baltimore alone? I was looking at the rainbow colored giant spider and the giant bat that I could see, hear, and feel in my bedroom at night, because I was hallucinating. I was smelling things like cigarettes that were not there, and telling a psychologist at my school that this was a sign my dad must have raped me as a child, and I needed to sue him (she was another mental health professional who didn't recognize psychosis). The other things I was doing were worse. Because I was manic, and because I had lost all sense of what actually mattered to me in life, I was going in these disgusting, filthy adult movie theaters in the city and letting disgusting, filthy strange men grope my body. I didn't even care at that point what happened to me, because once you feel like you've been raped regularly for 23 years and you're insane because of it, pretty much anything self-destructive seems entirely justified. So I totally self destructed. Totally. The only bizarre thing is that I lived through it. Let me see, what other wonderful things were happening...oh, that's right, I was supposed to be going to Smith College and ended up in a homeless shelter, but I've told that story enough times before.

Did Lindy know any of this wonderful shit? Did she know about paranoia and about total mania and about delusions and about voices and hallucinations? No. She knew nothing. But I didn't make it to her wedding, suffice it to say. So, she hated me, forever, for that.

A few years ago, I decided to try to set the record straight with my former best friend, and wrote her a message on Facebook, in which I explained that I had been suffering from Schizoaffective Disorder, had been in a psychotic episode, and had ended up in a homeless shelter during the time of her wedding, and that I was really, really sorry that, not only did I miss her wedding, but also, in 2005, I sent her mom a message saying I was going to kill myself and wanted to tell her goodbye, during another psychotic episode (the one where I held the gun, loaded in my mouth).

How did Lindy respond to this information? She didn't. She never even wrote back. At all. Ever.

I no longer waste my time trying to be friends with people who prefer to deny the reality of my existence, so I don't normally give a shit about Lindy at all, but for some reason, today, right now, this is bothering me. What is bothering me about it is that I am so incapable of forming friendships with people, it has really hurt every goddamn time the few that I have managed to form have failed, entirely, due to my mental illness.

Mental illness has got to be the most isolating experience known to mankind. Other than, perhaps, solitary confinement in an actual, physical prison (I used to write stupid, whiny poems as a young adult about being inside a mental solitary confinement).

That is probably the worst thing about it, and that is the main reason I ever created this blog. I simply needed some form of human contact, and someone to talk to. I needed it to basically survive. So this blog has been up for ten years, mostly because I don't know how to make close friends. You can blame what you are reading right now on my sad lack of social skills.

It's embarrassing when you're forty and you've only had one long-term boyfriend in your entire life (long term being defined as more than a month). Embarrassing. I don't care that everyone assumes I'm a lesbian, because I don't have anything against being a lesbian. But, the fact of the matter is that I don't happen to be a lesbian, and even if I was one, I wouldn't be dating women either! I don't know how to relate to people on a social level. When I dated people, at all, it was in the above-mentioned state of psychotic mania, and that is not exactly a charming time to have to think about. I had horrible, horrible experiences with men due to that state of mind that I lived in for years. Horrible things to remember. And three of them were sexual assaults, but the other ones were merely horrible experiences for other reason. I can't even write about this, so nevermind. I will probably want to delete all of this later, because it is still humiliating. I did a lot of very ridiculous things in my 20's, whilst believing I worked for the CIA and that I had a microchip in my body. Thinking things like that often involves making regrettable decisions. Mine were pretty goddamn regrettable.

But what I lacked in my 20's, and what I always lacked for most of my life, were actual friends off the internet. I didn't have ANY friends off the internet during the three years when I lived in Virginia, or the year and a half before that when I lived in Baltimore, or the years after that, when I lived in Florida. None. The only friend I emailed with a lot who I had first met in person, and not on the internet, was my former professor. That was it. Suffice it to say, I wrote a lot of fucking emails. And its is pretty humiliating to think about. I had other email friends, but they were people I met online, and I was never around them much in person. One of them, out of five, is the only one I still know. We have never met in person. She's also a writer, maybe that explains it, I don't know. She and my former professor are two of the kindest human beings I've ever had the good fortune to come into contact with, and the only two non-family people I've known since the 1990's who I still talk to.

I am pretty sure both these people got sick of me a really long time ago, but for some reason, they are just too nice to say it.

I told my therapist yesterday that I was writing way too many emails to my friend, and that, once again, I feared I had Borderline Personality Disorder because of my behavior. Once again, as usual, she told me I don't have a personality disorder. She's known me for years, and she's a good enough therapist to be able to tell by now, as was my last therapist and former psychiatrist, all of whom repeatedly assured me I do not have Borderline Personality Disorder, or Dissociative Identity Disorder, and never have. I sometimes need that reassurance, because I get extremely concerned and humiliated by how much I am bothering other people, such as my former professor friend.

I don't know what I'm getting at with this post anymore....I guess what I was trying to say is that I really have a glaring lack of social skills, which is why, during every hour when I haven't been at work or school in the past month (and I only work 15 hours a week), I've been alone, aside from a couple times when I was around my mom. That is it. Alone. All of the fucking time. With my cats, who are probably feeling pretty neglected by now, because they simply get on my nerves at this point, and I don't even bother talking to them. That's pretty sad, when you are too depressed to even talk to a cat. The cats used to be the main people I conversed with on a daily basis.

I should probably tell you what else has gone wrong lately, just to clarify why I sound like such a raving maniac. Aside from the two tickets by the cop, I also received a parking ticket at my university for brilliantly forgetting to renew my permit to park, which is a permit I now do not have the money to purchase. The harddrive on my laptop, which was the only computer I had ever bought in my entire life and which I only had for two years, completely died, leaving me without a computer. I came up with the money to buy a new laptop, and Best Buy sent me one that broke within days. Today, the reason I sound angry is because I spent literally three hours of my life at Best Buy and/or on the phone with them, trying to return my computer, which they keep refusing to allow me to do for reasons that are absolutely nuts. Also, I cannot think therefore, I am having panic attacks in my statistics class, where I feel like I cannot breath at all, and I cannot read the book or understand anything that is ever said in that class, at all, so I am probably going to fail that class, which means not graduating from college. My therapist tried to get me to ask someone to help me clean my apartment, and there is no one to ask. My therapist also suggested talking to more people, since I am concerned about bothering the two people I talk with generally too much. So I tried emailing mental health advocates through NAMI and mentioning that I've been in a bad depression for over a month, but I guess none of them want to talk to me now, since I am irrelevant as I'm not spending any time doing volunteer work, so none of them bothered to write back, and that was kind of depressing, since it just clarified how meaningless my life is.

I did have a friend I see no occasion call today and ask if I wanted to come to her house, which was very nice, but really I would not be much company at the moment. I'm kind of incredibly miserable, in case you couldn't tell. Who the hell wants to be around a miserable person? Really, no one, which is why I am spending time with no one. Putting on a facade at this point takes such an overwhelming amount of energy, it is hard enough doing it 15 hours a week for my job.

Oh, and my whole family is miserable too. My sister is in one of her usual crises, from what I have heard from my mother (because my sister does not communicate with me herself at all), and my brother tells me off today because his "life fucking sucks" and I simply said, "hello. how are you?" and got that response, and my mom, being the dysfunctional mentally ill person that she is has called me, most days, up to 10 times, just because I am supposed to CHEER HER UP since she is a miserable human being. If you think what you have just read here makes me a miserable human being, you really would have to meet my mom to understand exactly how miserable people can get. She has always been miserable, all of the time. I am not like this most of the time. The world can't handle two people who are like this all of the time.

I think I've written enough, since I'm really inclined to delete all of this. It's probably one of the dumbest things I've ever written. But, since I spent the entire day trying to get my computer replaced so that I could write, which failed, so I am now at the library writing this, I guess I will just leave it here.

I did talk to another person today, because I called her and she runs a NAMI support group. I don't know why I called her now. It makes no sense to call anyone. But I did, and she asked me if I was suicidal. I said, I get those thoughts but I'm not acting on it. She said she gets them and acts on them by cutting her wrists, so it was good that I was not doing that. I'm not going to cut my fucking wrists. What I think about doing every day is far more lethal than that usually is. I'm not doing it, but I think about every single day. And I think about what to write in a suicide note, and how to explain my crime of killing myself in a sentence or two, as if anybody would really even care in the first place. I think about it, and then don't do it. I've been thinking like this since I was 12 years old; this is nothing new for me at all. The first suicide attempt I had was when I was 15. Who overdoses when they are only 15? Not happy people. I was not a happy person. What they didn't really explain too well to me when I was 15 (the mental health professionals, that is) was that it was never going to end. That mental illness was ALWAYS going to be a part of my life. They really did not explain that. Maybe if someone had explained that, then I would have just killed myself. But I kept thinking about that day in the far-off future when it would just GO AWAY. It never went away. There was Major Depression, then Anorexia Nervosa and self mutilation, then mania and psychosis which was repeatedly misdiagnosed, and finally, here I am at 40 with Schizoaffective Disorder, having taken meds every single day of my life for the past ten years without fail. And it still has not gone away. It is NEVER going away. That is a fact of life.

A note to Lil: I think you are the only person who still reads this blog regularly. If it weren't for you, I don't know if I'd even write it anymore. I really appreciate all of your unwavering, undeserved kindness and support over the years. I miss your blog.

Saturday, September 19, 2015

The Whole Story: plodding along with depression because broken parts are not all that I am


I go down to the edge of the sea.
How everything shines in the morning light!
The cusp of the whelk,
the broken cupboard of the clam,
the opened, blue mussels,
moon snails, pale pink and barnacle scarred—
and nothing at all whole or shut, but tattered, split,
dropped by the gulls onto the gray rocks and all the moisture gone.
It's like a schoolhouse
of little words,
thousands of words.
First you figure out what each one means by itself,
the jingle, the periwinkle, the scallop
       full of moonlight.
Then you begin, slowly, to read the whole story.

One foot in front of the other. I am trying to manage things. It is difficult. I think what you learn more than anything when you live with serious mental illness is perseverance. I should really be getting my PhD in the Art of Perseverance. It is something I've actually learned to do pretty well - not every second or every minute or every hour, or even every day, but overall in the grand scheme of things, generally speaking, I do not give up. 

I'd like to give up much of the time, including lately, but I generally do not give up for good (if I did, frankly, I'd be dead).

I give up for a while: a few hours, a day, a weekend, a few days, but overall, I do not entirely, completely give up much. I keep plodding along, ugly and boring though life may seem. I try to find things to laugh at. There are so many stupid, idiotic things that go on in this world every day; it's not hard to find things to laugh at if you look around. I make fun of things. I scoff. It keeps me going.

I really appreciate everyone who has ever been there for me. Recently, I have done as much reaching out as I can. I've been emailing with a friend of mine who was my professor many years ago frequently; that helps a great deal. I've talked with my best female friend; that helps. I've been going to therapy and saw the psychiatrist about the meds; that helps. I called my case manager's supervisor, as my case manager is somebody I've only met one time who never called me after that one time, and I didn't even remember her name. So I asked if she could please call me because I am unwell. She did, and I told her it would be helpful if she would come visit me, so she did. I told her when she came that I have major issues with cleaning when I get like I am right now (this is common knowledge to the mental health agency staff; they own my apartment and have given me numerous orders to vacate the premises if the place was not cleaned up in short order, over the years, but she works there and seemed completely oblivious to my ten-year history with this place). I got the impression she wasn't going to be able to help me unless I tried to explain, so I tried to explain. So she said she'll come visit every two weeks. This will give me an incentive to clean. You see, if I am threatened with the possibility of eviction (a self-inflicted possibility as I am the one asking her to come), then I have a real motivator to clean. It's sad that this is what it comes down to with me, that I literally can't drag my ass out of bed to do the dishes in my exhausted, apathetic state unless I think I'm going to become immediately homeless, but that is what it comes down to. So I'm doing what I have to do. The case manager can't really help me with anything else, but she can show up and bang on the door, so showing up and banging on the door is what I asked her to do.

You see, you really have to be pro-active. It would be so easy for me to have ended up languishing in a group home or an assisted living facility all my life. The way I feel right now, I could very well be in one, if I were to just let myself stop trying to function at all. Some days I pretty much do stop trying to function at all. 

But I reach out. There is Facebook. I go on Facebook because that is where my social life takes place. I don't get out much around people, but I go on there, and I converse with people who are interested in similar things. I am in radical feminist groups, groups for people with mental illnesses, groups of Democrats, groups of people with Lupus, groups of people who have a "child free" lifestyle, groups of people with pets, etc. I have something around 1300 Facebook "friends", and though I don't know most of them in real life, I manage to talk to people this way. My family belittles it. My sister says, "My life doesn't revolve around Facebook like yours". Well, good for you, then. Actually, her life revolves around watching TV, not much different if you ask me. At least I'm talking with other humans. My mother and my sister were so offended so many times by my speaking about mental illness on Facebook, that I unfriended them months ago, so that I could post what I want and not worry about whatever they think. My mother hates all of my political beliefs; she wants Donald Trump to be President (gag), so it's best that we aren't in contact on Facebook. I have enough contact with her as it is!

My therapist says I need to do more enjoyable activities, things that are pleasurable. I said, I go on Facebook; I enjoy that. I don't have a lot of other enjoyable activities right now. I'm kind of trying to survive and keep my head above water, and that's about all I can manage. The activities of daily living are difficult enough without trying to enjoy anything. I don't even know how to enjoy anything right now. I'm not in that frame of mind much these days. But my therapist is helpful, and I like her. I don't know what I'd do without her, really. She keeps me going.

I am allowing myself to eat junk food these days. Frankly, I just don't care about my weight right now. I was really into healthy eating and exercising for a year, but at this point where I'm so apathetic about everything, it's impossible to  care about that stuff. I just do not give a damn at all. I just eat what I want right now. Brownies, cookies, chips sometimes. Whatever. I just eat what's fast and available, which is sometimes junk food. I haven't been managing to go grocery shopping much. It takes so much energy to do that. You have to get organized and take a shower (or look gross without one), and go to a store, and be around noises, and lights and people, all those people, and then you have to remember everything you need to buy. After that, you have to stand in a goddamn line and lose your patience and get frustrated, when you're beyond the point of exhaustion already as it is. And after that, you have to go home, and lug bags of stuff up the stairs to your apartment. Right now, it's just too much. But I'll do it. Maybe today. I am out right now. I'm at a library, at the school where I work, because I needed to go somewhere to work on my math exam. 

I finished the exam, so that is good.

After this, I guess I can go grocery shopping. It will take effort, but it is one of those things you kind of have to do. I cannot afford to keep eating fast food.

I think it's the lack of energy that makes everything take so much effort. I am so exhausted, all of the time. I wake up tired and by the end of the day I'm completely dragging. It takes everything in me to go to my job and do my work. And I only work 15 hours a week! This makes me realize, in all honesty, there is no way in hell I'm ever going to be able to hold a full time job. Which, if I let it, could make me feel more depressed, but I don't have the energy to waste on such thoughts. I don't really even care right now if I ever work full time. All I actually care about is trying to manage my classes, get my degree, and keep my job. I don't really care about the future at this point.

This is just where I'm at now. I know it sounds negative. I can't sound positive all of the time. I mean, I suppose I could, but  that would be phony. And it's hard enough having to be phony around people at work or school, much less to have to do it on your mental illness blog! Why have this blog, if only to be phony here? That would make no sense. This is my refuge, the one place I have where I can talk about anything I want, in any tone I want, and not worry about people's opinions of me. I don't have that anywhere else in life, really. So it's always helpful to be able to write here, and I very much appreciate any comments people leave if they read these posts.

The increased dosage in my antidepressant hasn't done anything yet. My psychiatrist prescribed Adderall, which I don't like taking because it's an addictive stimulant and I do not have ADHD. So we'll see what happens with medication. Right now, I'm going to keep plodding along, doing what I can. 

I have my cats. They help. And poems.


Related Posts with Thumbnails