Sunday, August 23, 2015

Here now and present in all that surrounds me

I thought I would write an update on how things are going. I am doing pretty well symptom-wise right now. This past year has been the longest period I've gone without prominent psychosis since 1998. It has been over a year now. I entered the hospital on July 17th, 2014, and today is August 23rd 2015, almost a year and a week after I got discharged. I'm glad I had that hospital trip, because, in retrospect, this medication change was probably the best thing that has ever happened to me since psychosis first entered my life. I could say the best thing that ever happened to me was "survival", but survival never just "happened"; it was something I did and is something I still do every day. I will always be surviving, just like everybody else. I've survived many suicide attempts, and I've survived homelessness, and I've survived sexual assaults. I survived a lot of child abuse too. But that didn't "happen"; that was work.

The medications didn't really just happen either; however, the fact that they are effective happens within my neurotransmitters, and I have no control over what goes on up in that brain. I can control what I do with what goes on in there, but as far as maneuvering the neurotransmitters goes, the pills do that and nobody knows exactly how they do that or why they work.

What I did control, though, was the getting put on the medication that worked for me. I totally took control of my life a year ago. I refused to take Clozaril anymore, because Clozaril clearly (clear even then, but a hell of a lot more clearly now) never worked for me effectively at all. I read about the Saphris that I'm now, and I knew that it was one antipsychotic that I had not tried, and I asked the doctor to put me on it. He was ready to try to convince me to do electroshock therapy, but I told him I did not want to do that. I'm not saying that people with mental illness never benefit from ECT, but there is not much research at all indicating it is effective for psychosis, and I am not willing to do things that have no research showing they are effective, particularly things that involve electricity going into my brain. So I told him I wanted to try Saphris. Smartest sentence that has probably come out of my mouth in the past decade of my life.

I said it while I was sitting there hearing voices and seeing, literally, writing on the walls, and while I was thinking about jumping off the Skyway Bridge (my go-to suicide plan when things get bad), because the voices were telling me to. I was in so much debt (and still am), creditors were calling me on a daily basis, and I could barely get dressed and get to my part time job, much less do anything else. I was unable to clean my apartment or take care of things in any kind of healthy manner, and I was completely terrified of my existence.

Saphris changed all that. It was the first antipsychotic of all of the ones I've been on (I've been on a dozen of them), to ever change all of that the way it did. I went into the hospital manic and psychotic, and with the adjustment of a new antidepressant, new sleep meds, and a new mood stabilizer, in addition to Saphris, I came out no longer experiencing psychosis or depression or mania at all.

I came out okay.

Usually hospital trips result in me coming out sort of better off in some respect or at least enough that the medical professionals can legally justify sending me home. But often times, I am bad off for a very long time without ever going to the hospital, and often I leave the hospital when I do go in not feeling a whole hell of a lot better than before I went there.

That was not the case with my last hospital trip. I have had over 20 hospital trips, and this was the most productive one of them all. The medications that I was put on this time just work

I was really scared recently with the side effect issue I wrote about previously of urinary retention, that I was going to be taken off my medications. Two urologists and a pharmacist told me that numerous meds I'm on could be causing me to have this problem, and the urologists both said I might need a catheter. To explain, I'm not a wimp, but I can't handle anything gross. And me putting a catheter into myself a few times a day, every single day, for the rest of my life was not an acceptable solution to this problem for me. So I was faced with the challenge of trying to figure out whether I could go off any of my medications safely or not. This. Completely. Terrified. Me. I was so freaked out I even wrote about urinary retention on my blog, which is probably one of the most embarrassing things I've mentioned here in a while (though not really more embarrassing than the fact my apartment was infested with fleas a year ago..).  The reason I was terrified was because these medications work. And I cannot and will not be able to have the same peace of mind I've been so relieved to find without these medications. At the same time, I do not want a catheter or the frequent infections that come with them.

So I talked to my psychiatrist and he agreed that I could go off Trazadone if I wanted to. Trazadone was something I was only taking for sleep. I am still on other things for sleep (Restoril and Melatonin), but I stopped taking Trazadone about five weeks ago. I went back to the urologist. It turned out that my bladder problem has gone away! I am not longer having the problem of not being able to empty it. I did my research on Trazadone on urinary retention on my own and I also asked two pharmacists at my pharmacy to look up which medications I was on could be the most likely culprits in the problem. I then did the math in my head as far as what the cost/benefit analysis would be of going off Trazadone and decided it was the least risky thing for me to stop taking and this, coupled with the fact that it was indicated to cause urinary retention, lead me to stop taking it. I still sleep too! I had to get used to not being on it at first, but since I'm on other stuff for sleep, as I mentioned, it was not like I had to go back to my days of horrid insomnia and endless sleepless nights.

So far, so good.

This is a huge relief!

So that is good news. Other things are going okay. I had a couple weeks off work without pay which was not good at all, but I am surviving. I've had to buy all new clothes, now that I've lost so much weight in the past year, but I've bought them at thrift stores, where they are affordable. I actually quite enjoy thrift store shopping sometimes. So when I was off work, I went to a bunch of thrift stores. I found a fantastic deal one day with a 50% off coupon at one of them and got a couple pairs of jeans and like five shirts for $14. It was pretty fun. I wanted to go to some museums while I was off work, but I never got around to it. I did go to two food pantries, and stocked up on some groceries one day, which was useful. I did not do anything extremely exciting, but I exercised and browsed the internet, things like that.

Now I'm back at work, and this week I also go back to school. This will be my last semester, if all goes well, at the university, and then, after almost 20 years in college off and on, I'll graduate with my B.A. in Interdisciplinary Social Sciences, specializing in Social Work and Political Science. I have to get through statistics and I'm really nervous about that, as I despise math and have never taken math at the university level. I've only taken it at the community college level, and even then I had to take the easiest liberal arts math courses, because I could not handle the overwhelming task of math. My brain was not able to do it in the past. This goes back to my years in elementary school where I attended a horrible little Christian fundamentalist school, where we didn't learn anything and I never got my math skills down pat. So then when I finally went to a public high school, I was already behind in math (and everything else, except writing and reading came naturally to me so I had no trouble there). I ended up with an intense fear and loathing of math, which is with me to this day. I've dreaded statistics since I entered this university four years ago, and I've intentionally put it off all along until the last semester. Unfortunately, I don't expect to do too well in it. But the good part is, my GPA at this school is 4.0, so all I need to do is get through it with a C and get my degree. I will go to tutoring every single week if I have to, and I suspect I will have to. That is okay. Somehow,  I will manage it.

So that is what has been going on with me lately. There is this saying in 12 step groups "it's progress not perfection", and I always liked that saying even though I am not currently attending any such groups. In my life, I've often had a tendency to want perfection, but the fact is that being a perfectionist merely sets on up for misery. You constantly feel like things are not good enough, that you're good enough, that nothing you're doing is good enough, and you never measure up, not even in your own head. So I could focus on the fact that I don't think I'm going to graduate school and feel like a failure about that or get really worried about applying to graduate school right now, but I've decided not to do that, and just to focus on right now. Right now I need to get through statistics, keep up with my job, and do my work in my political science course this week. Right now, I need to take some time to enjoy life, to exercise, to pet my cats, to eat healthy foods, and I need to keep my apartment clean and do my dishes. Right now, I need to take my medication every day like I've been doing for ten years, keep up with doctors' office visits and therapy, and talk to friends. That is enough for right now.  A year ago, in the hospital, I came up with a saying, "I am here now and present in all surrounds me". It is on my bathroom wall still today, with a couple of other quotes. It is the most important quote of the three.

Thanks for listening.

Sunday, August 02, 2015

Organizing and Cleaning!

I think that many people with serious mental illnesses have trouble with organization and cleaning. I know I certainly have had a major issue with this for the majority of my life. I used to be living in such shambles, it was thoroughly embarrassing. From 2006 to 2012 my case manager that I used to have, who was wonderful, would come to my apartment from time to time, and literally just help me pick up trash off the floor and throw it away. Can you imagine having an apartment full of garbage on the floor, and having to have someone help you pick it up? That is humiliating to even admit here, and this is a place where I admit pretty much everything.

After my case manager left the agency she worked for, and they did not give me a new one because I had not been in a hospital in several years, I was left to my own devices. My apartment turned into a disaster. There were always times over the years when I'd clean it well and keep it that way for a little while, but then it just went haywire all over again; or I should say, my brain went haywire all over again. For it is the problems with my brain that always led to the problems in my apartments. I always got worse when the psychosis got worse. I could not handle the simple tasks of daily life like washing dishes or doing laundry. I was utterly overwhelmed by the voices, the delusions, the constant onslaught of paranoia, and I could not manage to focus on anything. When I looked around me, I was so overwhelmed and devastated by the disaster I saw, I would shut down, mentally and physically. I would spend hours in my bed simply staring at the wall, or closing my eyes, listening to music, and trying to shut out the world around me. I could not even stand to be at home. When I was able to, I'd simple stay away from home as much as possible. I simply avoided it at all costs. To avoid the dishes piling up, I simply ate fast food, and never cooked anything. Not to mention, I couldn't handle the tasks of shopping for groceries or cooking for myself in the first place. It was all just too much for me.

Somehow, despite functioning like this, or not functioning that is, despite having dishes piled up for months and laundry that was never washed, despite the fact that I never vacuumed or even thought about vacuuming my dirty floors, despite the fact that I couldn't manage to drive to a grocery store and walk in and buy food and cook it for myself, despite the fact that I'd go five days without taking a shower at all, I was still holding a part time job and attending college.

I don't know how I held a job or attended college like that, but I did it. And to me, that was an accomplishment, because it took everything in me to manage to do those things. There was no room, energy left, no ability left to do anything else other than those things.

And so, I would end up with eviction notices on my door. They were  generally warning notices, but they were terrifying. They would say that if my apartment was not cleaned up, I'd have to vacate it. Then I'd panic, think about suicide, and beg my mother to come help me clean which was always a mistake because she'd simply come here and scream at me about the mess.

So a couple years ago, I started paying my best friend to clean for me. And she did that for a long time. She'd come every week, or every couple weeks, and it would take her a solid six hours to clean my apartment. I'd buy dinner (like I said, I never cooked), and I'd sit there while she labored over my mess. This is embarrassing to admit too, even on this blog.

After a long time of that, she knew I couldn't afford to keep paying her, and she also knew that I was not being helped by somebody doing this for me, so she stopped doing it. And then the apartment quickly went downhill again, and badly.

In July of last year, I went into the hospital. I was suicidal. I had a plan to jump off the Skyway Bridge, and I was going to do it if I didn't end up in the hospital first. I was psychotic, hearing voices telling me to jump off the bridge, and I was also just not being helped at all by the medications I was on. At that time, I was taking Clozaril, amongst a bunch of other drugs that did not work for me. I was going three days with no sleep at all, and managing to go to work like that, but it was killing me. I could not go on.

When I went into the hospital, my brother went in to my apartment and saw what a disaster it was. Not only did he see that it was a disaster, but it was also crawling with fleas - a fact I had been completely unaware of. To this day, I do not remember ever noticing a flea or a flea bite, but then, I was spending most of my time staring at the wall listening to the voices in my head, and I was not exactly paying much attention to what was going on around me, because I could not. I don't even know how I was still alive at that point.

My apartment was so full of fleas, that my cats had to be taken out of there. The landlord was going to evict me. The landlord agency is an agency for mental health consumers, and I have a recovery specialist there. Her supervisor, a wonderful woman who I have known for ten years, prevented me from being evicted. I couldn't afford to pay for the flea treatment that needed to be done to my apartment as well as to my neighbors' apartments, and she got that taken care of for me. She also went into my apartment, by herself, and whilst being bitten by fleas, she took every piece of clothing and linen and every pillow out of the apartment. She dropped it all off at a laundromat and had them clean everything for me. She also cleaned my apartment, herself. Can you believe someone would do that for me? I couldn't. Talk about going above and beyond the call of duty.

My poor kitties, who I love dearly, had to be kept at my mom's house for six weeks, while the apartment was repeatedly sprayed with professional pesticide flea treatment. No one could go inside. Finally, after I got out of the hospital, I came home, and I looked around. Everything was cleaned. It was amazing. I went down to the landlord agency and got all of my clothing back eventually, and put it all away. I vowed not to live the way I used to live anymore.

I should mention here, in case you haven't read my other posts, that getting my medications changed had perhaps the biggest influence on my life that anything could possibly have. I started all new meds during that hospital stay. and not that it has been over a year, I can tell you that these are absolutely the best meds I have ever taken. The antipsychotic I'm on now is Saphris, and I can testify that it has worked for me better than any other antipsychotic I've ever been on. This is the first year since 1997 that I have not been delusional, that I have not been paranoid, and that I have not had auditory or visual hallucinations, hardly at all, for an entire year. The first year since 1997. And that is amazing. Before this, I was on pretty much every other antipsychotic there is, since 2005, and none of them really worked for me. Sure, I could hold a part-time job, and I could sometimes go to school, but I was sick, very sick. And now, I feel about a million times better than I used to.

So for the past year, I've kept up with my apartment. I've done laundry regularly. I've done my dishes regularly. I've cooked regularly. I don't buy fast food anymore, because I can't afford it, and because it isn't healthy either. And I don't buy microwave dinners, because I cannot afford those. So I cook my dinner every day.

The real changes to my apartment happened in the past few weeks. I worked my ass off, cleaning every inch of this place from top to bottom. I organized every single drawer, bin, cupboard, and closet. I emptied out my closet and drawers full of clothes that no longer fit, because I've lost 70 pounds in the past year. I got back into decorating again, and I got some new things like these pretty kitchen curtains for $10 at Walmart:

I bought this nifty device on Amazon, to hang up my broom and mops and dust pans in my little utility closet, where my cats' litter box is, so they're no longer lying around on the floor in a bucket taking up space:

And to put that in, I figured out how to use my drill, and drilled the holes and put the screws in, by myself.

I fixed up my bedroom, getting rid of the old TV that hadn't been used for two years, since I got rid of cable (I gave it to my neighbor):

I always wanted a headboard for my bed. After joining some Facebook groups for people looking for free stuff or giving away free stuff, I found a woman who was giving away a headboard, not too far from where I lived. It was for a queen sized bed, which is the size bed I have. I wanted a headboard so badly, I headed over there in the rain and tried to fit it into my car. It didn't fit in my car, so I gave the woman $20, and we fit it into her minivan; then, she drove it to my apartment for me. I paid two guys who live here a couple bucs to carry it up the stairs for me.

It was dirty and scratched up and ugly, and it looked like this:

But guess what I did? I wanted to add some cheery yellow to my room, so I decided to paint it. I did a lot of research online on how to paint furniture. I didn't know how to sand something, nor did I really want to learn, so I got this primer called Zinnser Bulls Eye 123, that covers up stains and marks, and I put that on. It looked like this:

Then I got some yellow paint, and some polycrylic cover to make it yellow! And now it looks like this:

It's still in my bedroom drying. It takes a long time to do this, and it's especially tricky when you live in a one-bedroom apartment with two cats, and there's nowhere to do it except in your bedroom which has no air conditioning (I live in Florida), but I did it. I can't wait to see how it looks on my bed!

Today, I like my apartment. My kitties are healthy and happy. They've been on flea treatment every month for over a year now, and there are absolutely no fleas here.

This is Ribbit:

And this is Spooky:

I am working hard now at keeping my place looking nice, and orderly and it really helps my mental health. I suggest if you have any problems with organization, clutter, and cleaning, that you work on it just a little bit at a time every day, and eventually, you will see real progress. You can do it!

Wednesday, July 08, 2015

Very Disturbing Difficulties from Side Effects (chronic major urinary retention)

I hate to vent here again so soon after my last venting post, but I'm really upset about my medications.

My medications have worked remarkably well for me for the entire past year. July 17, 2014 I went into the hospital. I was put on entirely new medications right away. They are:

  1. Saphris
  2. Effexor
  3. Neurontin
  4. Tranxene
  5. Restoril
  6. Trazadone
I was also on Artane, which is to combat EPS (Extra Pyramidal Side Effects, caused by antispychotics), but due to the situation I'm about to explain, I went off Artane about a month ago.

I can't get the urine in my body to come out. I don't mean to sound disgusting, so I know this is a weird thing to write about on a blog, but it's a major medical issue if it gets much worse. Actually, it's already a pretty major issue.

It started to become noticeable to me around January of this year. Note, I started ALL of those medications, in July of last year, at around the same time. 

In February, I started going to the gynecologist on a quite frequent basis (about three times in like three or four months). I thought I hate urinary tract infections (UTIs), but that would always turn out to not be the issue. Eventually, they told me I needed to see a urologist.

I went to a urologist a couple months ago. The reason I went was urinary hesitancy (not being able to get the stream to start), urinary frequency (having to go at least once every hour that I'm awake, urinary urgency (feeling like I have to go all the time), and urinary retention (not being able to empty my bladder completely).

So they did an ultrasound quickly the first day. No big deal to me; it took all of two minutes. Then the nurse said (as I had just gone in order to the bathroom), "do you feel like your bladder is empty?" to which I said, "I never feel like my bladder is empty". She said, "there is still quite a bit of urine in there".

Odd, right? Of course, I figured, this is something they'll figure out soon here. The doctor came in. He was about 80 years old, and I immediately could tell this was not going to be like going to my rheumatologist who spends a great deal of time (at least 10 minutes) talking to me. He spent about a nanosecond talking to me. He didn't even look at the paperwork I'd filled out, where I'd listed every condition I have (there are a number of those...) and every medication I take (14 of those). He also didn't even talk to the nurse who had done the test. So I mentioned that the nurse had told me there was a lot of urine in my bladder. To which he said, "Oh they tested it?" He had no idea. So he checked with the nurse, and she said "there was almost 200 in there". I didn't know what this meant. But apparently it's not exactly normal, for someone who just tried to completely empty her bladder. Oh, also they emptied it for me since I couldn't get it to come out (fun).

I was scheduled for some tests. There was no conversation about why the tests were being done, but I knew why I'd gone in there, so I figured these must be tests to figure out why this stuff is going on. I had a Urodynamics test. Fun. They fill your bladder up with fluid; however, having no clue about bladders or much of how this stuff works, I had no idea what was going on. It was a PA guy this time (physician's assistant), and a nurse. I kept asking what he was doing. It involves a little catheter and some liquid that goes in you, and then they watch on a monitor to see if stuff is contracting. I guess the bladder wall is supposed contract, and the sphincter. Mine weren't doing much. So I mentioned something about losing weight (we were trying to have small talk while this weirdness was being done with my body), and I said how antipsychotics had made me gain a ton of weight, but I'd had mine changed and had lost a lot of weight (I've lost 65 pounds in the past year). The PA immediately asked me, "You haven't been on that kind of medication long have you?" Um, yes, actually I have.....

He said that pychiatric drugs can cause your sphincter to stop constricting like it's supposed to. I had no idea what a sphincter was, so this was rather interesting, but it immediately sent off alarm bells.

Obviously, I cannot go off my medication.

My medication has saved my life.

The past year has been the best year for me mentally that I have had since probably 1998.

It is the first year I've gone a year without auditory or visual hallucinations or persistent delusions since 1998.

The first full year. And it's been because of Saphris, and because of my other meds.

Anyway, the next part of this test was that I was supposed to urinate (I was sitting with this disgusting bucket-like thing below me), and they were going to monitor this. Nothing came out. They waited. They turned on a faucet. "Your bladder is really full right now; you should be able to go," the PA said. I couldn't go. Finally after they left and told me to just get up and get dressed, I ended up being able to go and then like usual half an hour later I had to go again. Nothing new there. This has been going on for months.

A week later I had a test called Cystoscopy, with the 80 year old urologist. He looked into my bladder with some sort of microscope device. Again, I was uncomfortable not knowing much about what was going on and the fact that he told me nothing didn't help. As he was finally in there, he told me that my bladder looked normal. I took this to be a good sign, but it didn't explain the problem. So I asked what the problem was. He said, "It's probably your psychiatric medications". I took this to mean he had no idea, as he also said he wasn't sure, and it seemed to me like blaming it on medications made no sense. He said, "I'm going to give you two pills to take", without naming the pills. I asked what they were supposed to do and why he was giving them to me if he didn't even know what the problem was. His response, "Well, you don't want a catheter do you? You're pretty young for a catheter." What? I just turned 40 this year. Yes, I think I am pretty young for a catheter. Why the hell would I need a catheter for some unknown problem???

I decided to talk to the pharmacist. The pharmacist told me that both of the pills the doctor had prescribed did the same thing, and he had no idea why this doctor told me to take both of them. I asked him specifically what medications I'm on that could be causing urinary retention. He said a number of them, but the number one was probably the Artane. I don't know if he blamed Artane specifically because it actually is the number one that could cause the problem or if it was because I also mentioned not wanting to go off my psychiatric drugs (again, Artane is not a psych drug; it's just used for EPS). So, I decided to just take Flow-Max (one of the drugs the urologist prescribed), and not Bethanacol (the other drug he prescribed), at the recommendation of the pharmacist. I went in to see the urologist again a month later. I told him as much. He was mad. He said, "You came in here for a problem and I told you what to do to fix it and you don't want to  listen to me! And I don't know what's the matter with these pharmacists, they don't know what they're talking about" (I should mention for transparency that by this point I already hated this doctor). So I said, "Well, I just don't want to take two additional medications for a total of 16 prescriptions when I'm 40 years old." I then conceded that I would do what he asked. So I started to do that. I also saw my psychiatrist. I told him that I needed to go off Artane and had already decided that I should. He agreed to this. I explained this doctor had told me that I might need a catheter and I was very concerned.

So for a few weeks I was on both the medications the urologist prescribed and no Artane. Things didn't get any better at all. Also for the month before those three weeks, I was on one of the medications that he had me on, so that means one I was on for like two months, and the combo for nearly one month. The burning when actually got worse, not better. I called the urologist and he was on vacation but they prescribed me an antibiotic over the phone and told me to go to a lab and get another test for a UTI. I took the antibiotic, but it turned out there was no UTI.

I had enough of this. I looked for a recommended female urologist. By this point, I'd learned that many women with endometriosis, like me, also get Interstitial Cystitis, and I was thinking that I had this or that I had a problem with my pelvic floor muscles, because for months I've been having a trouble with constipation (though that started long after the bladder issue started).

I saw that other urologist yesterday. I liked her. She took the time to actually explain things a little bit longer than the male one. But she said something I did not want to hear at all. I'll get to that in a second.

Again they did the ultrasound to see if there was urine left in my bladder. There was. The nurse asked me, "Do you feel like you're bladder is empty?" I said, "For me, yes. I can't empty it. That's why I'm here sort of."

The doctor said to me that I was walking around with a bladder containing urine at all times, and that this was not normal. The normal number was not supposed to be above 50, and mine was 150. This was after I had gone to the bathroom. 


This is the part that is bad: 
She said the problem is my psychiatric medications and that I am probably going to need a portable catheter ("maybe just for a couple months while you go off these medications"). I was like, "UM, I cannot go off these medications, and I do not want a catheter. Aren't there exercises for the pelvic floor that I could do?"). She told me to take laxatives (I've already been taking a fiber laxative every day for months and it hasn't helped much), stronger than what I'd already taken, practice "bearing down" (I already always do this, as I can't urinate and I'm not stupid), and that I needed to make sure I urinated every hour of the day, even though I already am. She said maybe this would work, but if it doesn't I need to go off the meds and/or get a catheter. She said to come back in a month.

What the hell am I supposed to do now?

I walked out of there feeling more upset than when I walked in. But you see, when you see doctors who aren't psychiatrists and you're on six psych meds, it's very hard to know what to say or not to say, because above all, I've learned that they will quickly chalk everything up to your mental illness if you let them.

So I tried not to take up too much of her time, tried not to seem like a hypochondriac (even though I'm obviously not as they can see the number on the stupid test, but I'm paranoid after bad experiences with doctors), tried not to seem "crazy" or "abnormal" or "neuroatypical". I did specifically ask her to tell me exactly what medications were causing the problem, assuming that it was one or two and she could narrow this down to those, and I'd be fine.

I don't know if I came across as seeming too normal to need all my meds, or if I came across as too much of a pest. But she was nice, in any event (I always wonder how I am coming off to people). She just didn't have a lot of answers. When she said she would write down the meds I was on that were causing the issue, I didn't think she'd come back with a list of every single psychiatric medication I'm on except Tranxene.

After an upsetting morning worrying about this, I got an appointment for tomorrow with my psychiatrist and went to the pharmacy to pick up my meds. A different pharmacist was there. I got him to look up my psych meds and asked him to please tell me specifically which ones could definitely be causing urinary retention. He was nice and did that. He told me Saphris and Neurontin and Effexor could definitely be the culprits, as could Pilocarpine (which is not a psychiatric med, but it's something I'm on for Sjogren's Syndrome), and also that Trazadone and Tranxene may or may not be causing it.

So at least I am more well-informed now. I am going in tomorrow with that list and talking to the psychiatrist about going off Trazadone immediately, and not knowing what else to do because I don't feel like I can live without my other meds.

Of course, I also can't live without a bladder, or with ending up some kind of horrible situation requiring a catheter for the rest of my life. So I'm a little upset.

The other problem is that, as I've gone off Artane, I'm not getting some EPS symptom episodes, where I'm feeling like I'm jumping out of my skin and can't stop moving or need to roll back and forth on my bed like a maniac or jump up and down. Obviously frustrating, and the psychiatrist told me to just take more Tranxene to compensate for not being on Artane. Now, I've found out Tranxene could also be something I need to go off. Tranxene is a benzodiazapine, and being on benzos since 1999 (low dosage always, never abused), I've weaned my dose down to one a day in recent months already, but had to go up to two sometimes again due to the EPS symptoms. Now, what am I supposed to do to get rid of EPS? I cannot go off Saphris! Saphris has saved my goddamn sanity. 

This is so upsetting.

Thanks for listening.

Whining is over.

If anybody else has had this problem and would like to email me you can do so at jen.evolving at gmail dot com.


Sunday, July 05, 2015

Having a Narcissistic, Abusive Mother (on top of having Schizoaffective Disorder)

Recently I wrote a post about Mother's Day and why it's a nightmare. I'm coming to terms right now with the fact that I have a narcissistic mother.




Yesterday I was with my mother. And, as usual, I regretted it. I spend a lot of time with her. I spend little time with anyone else, precisely because of the fact that I have virtually no one else who really wants to spend time with me usually. So there is my mother, and my mother always wants me at her beck and call. You see, this is because she can get me to do the things she wants me to do, and being the pathetically codependent person I was trained to be and still have difficulty not being, I do it. She wants to go to see a dumb movie like Jurassic Park that I have no desire to see, and I have nothing else to do - I go. Yesterday we went out to eat. Neither one of us had anything to do for the Fourth of July. My sister moved out of state to get away, my brother has virtually nothing to do with my mother, I am all my mother has, and I have hardly any friends myself. My mother has no friends. So she wanted to go out to eat since it was the Fourth of July, and since most people do things with other people in the U.S. on the Fourth of July. So I went.

The second I got there, I knew there was already a problem. She had gotten there before me. I told the hostess my name (I had made a reservation, but my mom was already there). One hostess told the other hostess, "She's at um, table 64 and make sure.....um......." I got the drift. There was a problem with the table. There is always a problem with the table, if you go to a restaurant with my mother. You see, and I can't emphasize this enough, nothing is ever good enough for my mother. Nothing is ever good enough for my mother. Nothing ever was, has been, is, or will be good enough for my mother. So you go to a restaurant, and the table is wrong. It's in the wrong spot. It's took close to the bathroom, or the kitchen, or they just sat you by the corner because they don't do a good job or they don't want to give you the good table for some unknown, unspoken reason that people are out to inflict evil upon you for no reason.

I sat down, seeing the look already on her face. "What's the problem?"
Do you think this table is good enough? she asks.
"Yes. Did you already get them to move you once?"
She had.
"Okay well I'm not moving to another table." This is me, attempting to set boundaries here, the little bit that I can.
So we didn't move.
Okay, so two minutes later it's hot in there. Her iced tea didn't taste like iced tea; there was something wrong with it, she said. The waitress, obviously exasperated but being polite gave her a new iced tea, then a soda after the second iced tea tasted the same as the first one. Then she starts in on me about my weight. I've lost weight. Everyone I know who knows me outside my workplace who has seen me lately has said I look better. I don't tell her that, and she never sees those people, so she doesn't know that, but even so, she's jealous of the fact that I look better.
So she starts.
All I ate today for breakfast was a yogurt parfait McDonald's that's 160 calories. For lunch I ate an Atkins bar, she says.
"Oh, so you're starving yourself? Great idea." I'm already irritable now, because I almost died of anorexia and she is quite well aware of that fact.
Does starving yourself work? I really want to starve myself to lose weight. I'm fat. (She says this smiling at the fact that she knows she's hurting me).
Does starving yourself make your stomach get smaller? I heard it does and I want my stomach to get smaller.
I look at her and say, "I cannot believe you are sitting here saying this to me."
She gets incredulous that I just stood up for myself.
I was talking about ME not YOU!

I could chalk all this up to fact that I'm well aware of as a feminist: women compare themselves to other women all the time; women are socialized to think that we need to be thin; women starve themselves a lot.

But the thing is, my mother is not starving herself. My mother is saying this crap just to hurt me. And also, it's not normal for a mother to be jealous of her daughter.

I was about 23. I had moved to Baltimore from Florida to live with my grandparents because my mother kept kicking me out of her house and even called the cops to have me evicted, and I wasn't driving around all night in my car to escape her wrath, I had literally nowhere to go. My dad's mother, my grandmother, and I were sitting at me in the kitchen of her house. She looked at me and said, "Jenny your mother has been jealous of you since the day you were born! She was jealous of you all your life. It's the weirdest thing I've ever seen, and I've never seen anything like it, but she never treated you right all your life. You don't deserve that."

Seventeen years later, I know she was right. She's no longer alive, or I'd call her up and tell her this - actually I'd write her a letter. She was always hard of hearing and couldn't talk on the phone.

It's hard to even write this. It's hard to even talk to my therapist about it. And I'm only hinting at the tips of the iceberg here, because the second I start writing this stuff, the guilt sets in and the disbelief sets in too. "Oh, she couldn't have really been jealous of me! She's my mom. And moms don't do that." "Oh, I shouldn't say such horrible things about my mother. What if somebody in my family ever reads this?? What if somebody finds me a horrible human being for saying things rudely about my own mother?? You can't talk badly about your own mother!!"

But there is so much more. There is the fact that, when she weighed less than me (unlike now, which is why she tells me she's jealous of me now since I weigh less than her), she looked at me, since I was obese (my highest weight was 236 pounds, and that embarrasses me to tell you, but it was due to the antispsychotic drugs that made me obese).....she looked at me and said, on more than one occasion:
Can't you just go back to being anorexic for a while to lose that weight?
"What???"
I said for a while, you really need to lose weight! (She weighed between 180 and 200 pounds herself when she said this).
"I almost died of anorexia." Besides it ruined many years of my life, besides it's not something anyone can do "for a little while", besides this is an absolutely sick, hateful thing to say to someone, especially your own daughter.
She'd also say:
You were so good at losing weight before..........You know how to lose some weight. Just take those diet pills again.

(I've written here before about my history of anorexia and about eating disorders awareness).

I was 17. I had gotten kicked out of an eating disorders treatment center because I refused to eat and they thought I needed a feeding tube, which is something that they didn't do there. My dad came. We were in an office. "Your daughter's still refusing to eat; we can't have her here. She needs to be in a hospital. You're going to die if you don't eat, Jennifer." My dad took me to the psychiatric hospital. I was admitted. It was at a university, and I was sent to get an MRI because they thought I had shrunk my brain through my starvation. Shrunk my brain. That's what anorexia does to you. They sent me for a chest scan, and other heart tests, EKG's, etc., in case I was going to have a heart attack. They weighed me, in a gown every day. I was 83 pounds. The psychiatrist I was already seeing and the therapist I was already seeing had already told my parents point-blank that I was dying, and that I must go to a hospital. So, yes. To be told at age 32, or 36, or 39, after recovering from anorexia, only to become obese due to antispsychotics, a fact which made me heinously depressed, that I should, "Go back to anorexia", by my mother, is rather hurtful. To be told, "I want to starve myself; tell me how", is rather hurtful. By my mother.

I was 14. I weighed about 114 pounds and thought I was a fat. She said, You have a HUGE BUTT! YOU'RE GETTING FAT!.

I was 12. I weighed probably no more than 90 pounds. I was at the top of the pyramid on my synchronized swimming team because I was the most petite girl on the team. I decided I was fat. I discussed dieting with my friend Kim who gave me the ingredients for some bizarre diet that involved eating cabbage and hot dogs and cottage cheese - all things I detested. I got my mom to buy them for me. Again, I weighed about 90 pounds, and she bought me the ingredients for a diet. A diet. Like I was fat.

But it isn't just about weight. At all. It is about so much more. Last night, I came across a website on narcissistic mothers. I wasn't searching for it, and I didn't look into narcissistic mothers, though I've often thought about how narcissistic my mother is, only to then feel guilty for having such a thought about her, knowing she has "low self esteem". Ha. She doesn't have "low self esteem"; she has a hell of a lot more than that. For a while I thought it was Borderline Personality Disorder. That resonated with me when I read a bit about it. And maybe that is it; I'm not a psychologist. However, I have talked to therapists enough to know there is a personality disorder. And when I read these characteristics of narcissistic mothers last night, and opened up each one to read the entire description, it really hit home. It hit home because it describes my mom, and how my mom has treated me all of my life. It hit home unlike her "Bipolar Disorder" diagnosis, which has clearly never been the only problem, and unlike her belief that the only thing she needs to do is go to AA (which I'm glad she does, of course, since she did have a drinking problem for a few years) and take a mood stabilizer, which has never fixed the actual issue. It hit home like it was the thing I had been looking for all of my life. All of my life!

To grow up into an adult, and not understand why your mom hates you, why she tells you:
I wish I had an abortion with you! I hate you! I want to kill you! You drive me crazy! You ruined my life! I almost had a car accident because of you! You ruined Christmas again! You ruin everything! Why don't you just kill yourself and do us all a favor?!

....and....

You're a mental case. You're crazy. There is something wrong with you. You're not normal. Why can't you just be like Lindy (my best friend), etc.?
....all before I actually had any mental illness....

.....and......

You don't do anything right! You're such a screw-up. You're driving me nuts! You made me do that (as in "you made me hit you" or "you made me scream at you for hours"). It's all your fault.

.....and......

It's your fault your dad left.

This is what it's like to be the scapegoat. To grow up like that, you wonder, "what is wrong with me?" Story of my life. Story. of. my. life. "What is wrong with me?" I could never, and still feel like I can never, figure that one out. Because there has to be something wrong with me. Clearly, there has to be. If your own mom tells you this from childhood, if your own mom acts like she hates you, no only are you indoctrinated to think there is something wrong with you, but you have to think there is something wrong with you, out of fear due to the fact that children are psychologically incapable of grasping the idea that their own parents really are incapable of caring about them. Maybe even incapable of loving them. Really don't care about them. Really don't say what they say out of love. Really maybe don't even love them.

Children can't cope with that, because if you think this as a child, you think you're going to die. Your parent is all you have. My parents were all I had.

I'm three, four, five, six, seven, eight, nine, ten, eleven...Lying in my bed. She's screaming. At me, she's screaming. She's been screaming at me. So I'm hiding in my bed. I'm scared, but I don't know what I'm scared of. I'm crying and sobbing and I'm saying, "Mommy.....Mommy.......I want my my mommy....."

I was 20. 21. 22. I had Fibromyalgia, and was diagnosed also with Chronic Fatigue Syndrome. I would later be diagnosed with additional things, but I didn't know that at the time. I was severely fatigued and in extreme pain. It had come on me, probably, due to years of stress. And I was young, and these were "new" illnesses in 1995, so no one had even heard of them, and everyone thought I was "too young too be sick" and "didn't look sick". But the worst part was the way she defined my existence for me. She told everyone I wasn't really sick. She told me I wasn't really sick. She tried to convince me of this. (And she still does, even though I've now been dealing with multiple chronic illnesses which have been repeatedly diagnosed by multiple doctors for 20 years, now called Fibromyalgia, Sjogren's Syndrome, Lupus, Hypothyroidism, and Osteoarthritis, though now I never talk to her about it). So I couldn't hold a job. I was never able to work full time. I had a job in a call center, because I had to quit my job in a library as I could no longer shelve books, due to physical pain, and the fact I couldn't stand on my feet for long. I was on medications and a rheumatologist told me to treat my body like it was 90 years old and stop walking for exercise, even though I was 19 when he said this. All of this was depressing as hell. I was freezing cold all the time, in pain, sick, miserable, often ruminating on suicide. But I still worked in that call center when I could. She kept kicking me out of the house. When she would kick me out of the house, she would take my stuff, all of it, and throw it in the trash, so I'd have to go and get it out before the trash was taken away so I didn't lose all my belongings, and this didn't always work, so sometimes I did lose all my belongings. I'd stay at my dad's when his wife would allow it, but she usually wouldn't allow it. 

I was 19. I moved to Baltimore to get away from my mother for the first time. But within six months, disregarding my grandparents' warnings not to go back to her, I went back, because I thought it was my duty to take care of my brother and sister.

I was 23. I moved to Baltimore again. This time I stayed till I became homeless while psychotic, at 24. I had little contact with my mother during these years. But between 24 and 27, I lived in Virginia, and she would do such things as call my roommates and harass them. 

These are the things she would say to my roommates:

You are prostituting my daughter! You must be her pimps and she is working for you prostituting herself, isn't she??!! What is going on up there?? Is she sleeping with you?? Are you making her have sex with you??

Yes, I had two male roommates. We had separate rooms. It was a condo, and I was living there because I'd been homeless and after sleeping in a shelter for months, and then a car, a friend from the internet got her former fiance to take me in and let me have a place to live in a spare room, in a condo. See, my mother couldn't handle that. She couldn't handle that I had a place to live, that didn't involve her, that didn't involve her controlling my life. She didn't call anybody when I was homeless, because she didn't care that I was homeless. That didn't bother her. She cared to make me look bad by telling people I was on cocaine (lie), or accuse them of lies like prostituting me, which never happened, or having sex with me, which never happened (and since when is it appropriate for your mother to take interest in who you're having sex with even if you are having sex?). I had no boyfriend in my entire life and never even dated anyone until I was 25 years old. So who knows, maybe she got wind of the fact I was dating? Maybe that bothered her? I don't know and I don't care. But, she's a control freak, and she's obsessed with wanting me to need her and wanting me to take care of her.

But I'll tell you something about those years when I didn't live in Florida. Those were the most free years of my entire life.

I was 1,000 miles away from her and I didn't give a damn. I went to visit her in Florida one time.

Yes, I saved up the money to go visit them. To check on my brother and sister, and her of course. I remember being screamed at. I remember her throwing stuff at me. I remember her telling me to get out of her house. I had nowhere to go. It was a nightmare. I was sick. I was so sick, I couldn't even walk through an airport, so I had to be wheeled in a wheelchair to get to Florida. But I went there, and I brought presents for everyone, and cookies I'd made for everyone, and I went there, and that's how she treated me. I called my friend from a bedroom, where I was curled up on the floor crying and scared in my mother's house. I was about 27 years old at the time. Yes, I had psychosis and nobody knew it, including me, but this is how she always treated me. Like garbage. I went home early.

I was 28 or 29. I was psychotic. She dumped me off at a homeless shelter. She didn't want to deal with me, claiming not knowing what to do. By the way, she's a registered nurse and she knew about NAMI and didn't go there.

When I finally had my first long-term relationship, when I was 30, she couldn't handle that either. Because I had someone else in my life, besides her, who was there. My relationship with him, of course, was dysfunctional and codependent, but that's not the point. She has actually said to me recently:
I'm mad at you for losing weight because you look like you could get a boyfriend now and then you won't want to be around me anymore. And what am I supposed to do?

So, when I had my relationship, she set out to ruin it. She treated my boyfriend like garbage. I've sometimes thought this was because she actually cared about the fact that he was a loser, but now I wonder if that was ever it at all. Yes, he was pretty much a loser, but then, I was no walk in the park myself. I had a lot of issues, I had never had a relationship for more than a month or two, and I had no idea how to behave in one. And I met him a mental hospital. But he was the first guy (and the last one) I was ever really in love with. And she treated him like trash. He hated my mother. He didn't want to be around her, and after the day she stuck her finger in his face and screamed at him:
You better not hurt my daughter or you're going to have to deal with me! Do you understand that?

Because she was accusing him of hitting me when he never had (I guess she thinks she's the only one who's allowed to hit me, maybe that was why this thought occurred to her - she's hit me many times).

He refused to be around her anymore. Ever. Until he ended up breaking up with me.

I haven't dated anyone since. I don't even know how really. I don't know what it's like to be really loved, except by a couple friends. I don't know what it's really like though, because my own mom treated me like that all my life. I associate love with codependency, so my former best friend and I were codependent, my one long term boyfriend and I were codependent (but my current friends and I are not at all).

More importantly, I'm not dating anyone, because I spend the weekends with my mom. I don't have anything to do, anywhere to go, but I go to her, because she calls me and says, "come over". And because she needs me. She needs me to be there. I have been there for her my entire life.

I have been taking care of my mother since the day she was born. By the time I was old enough to know how, I cooked and did laundry and dishes. When my siblings were born, she taught me it was my job to take care of them, and after my dad left, I did, all the time. I grew up feeling like I already had two children and I never wanted to have any actual children. I told people, "I raised my brother and sister already". My brother was born when I was six; my sister when I was seven. I started raising them by the time......well, I don't even know when. They knew to listen to me when they were very young, because I was taught to be that way, so I was that way. I told them what to do. To this day they resent me for it whilst simultaneously looking down on me, because, to this day, I am the scapegoat of the family. I always have been, because that is what she made me be. She taught them to taunt me as children, to believe I ruined their lives, to believe that I was the black sheep, that I didn't count, that they'd all "be better off without me". My brother, on the other hand, was the golden child, most of the time. When they were young it was those three against me, all the time. My mom made it that way. They'd go on trips to Disneyworld. I wouldn't go because I'd be blamed for how horrible things went after she got mad about something and decided it was time to start screaming. So I'd stay home alone. She took them on a trip to Maryland and left me home alone when I was a teenager too. 

I grew up hating myself. I've never known how to not do that. I want to know how. I try to not do it. But I can't help it. I tell myself, "No, you're not the ugliest person in the world. No you're not hugely obese (anymore). No you're not stupid. No you're not a failure. No, everyone's not "better" than you. No you're not going to be alone forever and it doesn't matter if you are." But I don't believe it. I hate myself. And I'm lonely. And I'm really freakin' sick of being around my mom. I've been so sick of that for so many years, I can't even remember when it was different anymore. I don't think it was ever different. I know it sounds terrible to say this, but right now I hate her. I hate the way she's treated me all my life. I love her, as she's my mother, and I have to love her, and I have no one else. But I hate her for the way she treats me. I hate it. I hate being around her. I hate going to her house. I hate going to the movies with her. I hate going to restaurants with her. I hate seeing her on holidays. I hate it. I hate that I have no life.

Maybe the reason I have no life, is because I was taught to hate myself from an age so early that I don't remember ever not hating myself. I really don't. I was self conscious from the earliest memories I have. It was called "shyness". That's a nice way of saying, "my kid hates herself" because it wasn't shyness. It was the fact that I hated myself.

You know I've spent years in therapy, and it's only been in the past year that I've even talked about my mother. I wasn't really able to before, because I went to therapy to deal with the psychosis and the depression, but, now I'm not psychotic and I'm not depressed. I'm functioning better. I'm not ever going to be "better" from Schizoaffective Disorder, but I'm on medications that help me now. And for the first time in my life, I feel like I'm figuring stuff out about my relationship with my mom. Like I'm ready to start healing this garbage that has always haunted me, finally, for the first time. At forty years old. I don't know if that's progress or if that's pathetic.

I feel like I could use a hug today. I was sobbing hysterically for a few minutes earlier this afternoon. About my mom. Because a lot of this is really hitting me now. And I feel like I'm finally coming to terms with the fact that this shit isn't love. This is abuse. And it is still abuse now. And it has always been abuse.

I was 30. I was in her car. I had psychosis but I had a job. I didn't have a car because I didn't have any money. There was a guy in a nightclub that wanted me to meet him there from work. I'd been warned not to go out with him, if I recall currently, but I was trying to feign normalcy so I was trying to "go on a date". She beat the shit out of me in that car. She hit me hard, repeatedly. She was my mom, and I was 30, and it wasn't a delusion, because I never imagined it, never forgot it, remember it like it was yesterday, just like I remember being sexually assaulted and I can tell you where it happened because it was not  far from her house and I drive by it every week. And last night, when I drove by it, on the way home from her house, I damn sure thought about it.






Thursday, June 25, 2015

Tips for Managing Life with Chronic Illness

There are some things that have helped me greatly improve my life; there are also things that I've done which made things worse rather than better. But overall, for the past ten months, I've been doing better than I have in years. So I thought I'd write some of the top things that have helped me. These are things that can help with any chronic disabling illness, not just the psychiatric kind. I have physical disabilities as well as the psychiatric ones, so I understand all aspects of living with invisible disabilities, and how hard and stressful that can be. Chances are, if you've come to this blog you're looking for answers and help. I want to offer some.

1. Realize that you will never be able to do every single thing you want to do in life. No one can, but especially not people who are sick and have limitations. I say this because it is probably one of the most important lessons illness (or "stillness", as an old friend used to call it) has taught me. It is important to accept that you will have things you want to do that you won't be able to do. This is especially pertinent for "Type A", perfectionists who want to do a million things every day (this is me). Once you accept that you have limitations, you can start managing life accordingly, and once you do that, it will help you get rid of some of the stress put on you by trying to do too much. Stress makes symptoms worse.

2. Remember that you can still do many things that you want to do; you just have to manage your time and energy a bit more than most people! I say this because, even though we must accept our limitations, we also must not give up on our hopes and dreams. Hopes and dreams make life meaningful. So accepting limitations does not mean assuming you must do nothing but lie down and wait to die for the rest of your life. When you're first diagnosed with a serious illness, it's heartbreaking. Or sometimes you will be sick for years and not even know you have an actual illness, and that's extremely hard too. Horrible things happened to me in my life when I was undiagnosed as Schizoaffective, so I totally get that actually receiving a diagnosis can be a relief. It's also depressing though. So don't let it ruin your belief in your future. We all have a future. We don't know how long it will be for, or what will happen in it that we cannot control, but we all have some kind of future, however short or long.

3. Set goals every day. It's important to get out and do things when you can. If you're sick physically, sometimes it's very hard due to fatigue and pain (I know) to get out and do things. I wasted some years in bed most of the time. I will never go back to that. At the time, I was quite ill, but I fell into the belief that ALL I was, was ill. I believed I couldn't function physically, so I laid in bed. All the time. And that was a huge mistake. I was also psychotic during that time and undiagnosed, not on meds, so that was part of the problem. But I will never just give up again. If you're stuck in bed a lot, at least try to go get your mail. If you can walk, go for a short walk outside in the sunshine. If you're dealing with mental illness and everything overwhelms you, set a goal to do something that you can manage each day. Small goals, like taking a shower and getting dressed are all some people can handle. Others will have larger goals that they can take on. I find that once you meet some small goals, the larger ones become a lot easier to achieve.

4. Eat when you're hungry, sleep when you're tired, drink water when you're thirsty, take meds if you need them. Simple things are important to do. I think setting the goal of taking care of yourself each day is very important. I recently had a moment when I came to the realization that I am taking care of myself because I care about myself. Repeat. I am taking care of myself, because I care about myself. This was a huge moment for me. It followed with guilt, so I fought that thought, and said, "Why do I feel guilty about taking care of myself because I care about myself?" My therapist often asks things like, "What would it feel like to not feel guilty?". So I told myself, "It is not selfish or being self-centered to care about yourself. It is vital to living, and it is not something to feel guilty about. I do not NEED to hate myself for my entire life". 

5. Change your diet if you haven't already. It's hard, I know, but getting a lot of fatty, sugary junk food out of your diet will almost always make a lot of illness symptoms get better. Eating vegetables and fruits, drinking water, making green smoothies with vegetables and fruit (I know I've mentioned this before), not drinking soda, not eating candy or junk food or a lot of meat (I don't eat any meat but seafood), and looking at the ingredients of what you're about to put into your stomach before you eat it, are all good (and hard) habits to make. Eating fast food and diet dinners all the time went out the window for me last summer, after I realized that not only was it unhealthy, I could NOT afford to do that financially anymore. I started watching what I eat carefully, got my Diet Pepsi/Diet Coke addiction out of my life, started making green smoothies many mornings for breakfast, started drinking green tea sweetened with Stevia instead of diet soda, and eventually lost almost 65 pounds, in the past ten months.

6. Get some exercise. I know people used to tell me this and I found it insulting because exercise physically hurt and exhausted me so much that I thought I couldn't do it. But I started going on short walks, then longer walks, then even longer walks in the past ten months. Then I joined the YMCA and started going there for exercise, because it's awfully hot to walk outside in Florida in the summer, and because they have a pool there where I do water exercise classes which are much better on the Osteoarthritis in both my knees and the Fibromyalgia in my whole body than walking all the time is.

7. Look into any alternative medicine therapies you can afford which have been tested and proven to help with your particular problems, if there are any. I can't afford much in the way of alternative therapies, but I take fish oil because it's good for the brain and for the joints too, krill oil because it's good for the inflammation, a multivitamin/mineral supplement, and a lot of B vitamins everyday. Also, I take melatonin every night for sleep, along with my meds, which brings me too....

8. Make getting good sleep your top priority. We spend half our lives sleeping. It is not small matter. It is a big part of physical and mental health. Following sleep hygiene guidelines, like not having a TV in your bedroom, going to bed and getting up at the same time everyday, not keeping lights on at night, not doing anything other than sleep in your bed, etc., will help with insomnia. I didn't believe that for a long time, but that, along with major meds for insomnia have allowed me to sleep better. I used to go days on no sleep at all. It was hell. Research has shown that insomnia Schizophrenia/Schizoaffective Disorder are linked. Also, physical pain gets way worse when you get no sleep. I think getting a good night of sleep is one of the most important things you can do for yourself. Trust me, it makes a world of difference! 

9. Eliminate as much stress as possible. This is hard, but extremely important. Some things you can do to eliminate stress are going to therapy regularly, or attending a support group regularly, getting a manageable workload if you have a job or switching jobs if you have a really stressful job (I had one, no longer), and managing your relationships with other people.

10. Get toxic people out of your life. This is very important. I still have a toxic person in my life, but another one I got out of my life a few months ago, and it's been a huge relief. I was spending hours with this extremely passive aggressive, self-centered person on the phone every week, and it was making me so miserable. I would mention that I couldn't stay on the phone with her all the time, and she would whine and put a guilt trip on me for it. She's extremely immature, and my contact with her almost always made me miserable. I couldn't take it anymore. So I finally flat-out told her, "I think you have Borderline Personality Disorder and you need help". She didn't want to talk to me again, which is good, because I definitely don't want to talk to her again either. So that was that. It might sound mean, but you don't know how mean this "friend" was to me with her manipulation and mind  games. I don't have the time and energy for that crap! I have a life to live, and I would rather live it than revolve it around someone else's dysfunction.

11. Set boundaries with toxic people you can't eliminate from your life. For that matter, set boundaries with everyone! This is important. You do not need to be or have to be the be-all, end-all of someone else's existence. I have someone in my life who still puts me in this role, or at least tries to, and she's been doing it since I was born. It's a bad situation, but it's gotten better since I started learning what boundaries are and how to say that I will not put up with certain things, such as verbal abuse. I've learned when to not answer the phone and when to hang up the phone. And that helps. 

12. Get a pet! Adopt one from a shelter! There are so many animals who need homes in this world, and I cannot express how rewarding it is to have one in your life (or two or ten) who will love you unconditionally. Pets give you something to focus on. For example, you must walk dogs and feed cats and dogs and change cat litter boxes. Once you realize that, then of course you have a reason to get up in the morning. Pets are also so soothing and comforting. I don't know what I'd do without my cats.

13. Practice mindfulness. Go out and enjoy nature, sit outside, walk through a park or on a beach, listen to music, eat without watching TV or anything else while you're eating and just focus on the fact that you're eating. When you're washing dishes, focus on the fact your washing dishes. Use your "wise mind" as they say in Dialectical Behavioral Therapy (looking up DBT might help you if you haven't already). Meditate if you can. Sit in a quiet space and focus on your breathing, breathing in and out deeply for a few minutes. This will help you relax and help you sleep. I used to think I couldn't do it at all, but with practice I learned to relax a bit. Read books by people like Thich Naht Hahn.

14. If you believe in God, go to a church, or a synagogue or mosque, etc. If you're like me and don't believe, you can still go to a church such as a Unitarian Universalist church or you can go to humanist/atheist meetings in your area (there are some you can find on Meetup.com). Having some spiritual place or just connection to other people in general can help.

15. Turn off the TV and find something creative to do like writing, making crafts, sewing, painting, drawing, etc. You don't have to be a professional writer to write or an artist to do artwork. It can help you relax and make you happy. TV makes me feel worse if too much of it goes into my brain. I haven't had cable TV in about two years; I don't miss it, and I can't afford it anyway.

16. Turn off your computer, your phone, your tablet etc., and do something else. I find that staring at screens too much makes me tired and in pain physically. I get really horrible pain in my shoulders from just doing things like typing this post you're reading write now. If I sit at a computer too long, I hurt. I don't want to hurt all the time. So turn it off, and get back to basics sometimes!

17. Call someone. I'm not good at this. I almost never call anyone at all other than a family member, and I never have had many friends in the first place. But if you have even one friend or supportive person in your life, reach out. Try not to isolate too much. I need a certain amount of isolation, because I can't handle being around people all the time, but too much isolation depresses me and makes me lonely (and I'm lonely a lot).

18. Keep a journal. There are so many kinds of journals one can keep. A  gratitude journal where you write down anything you're grateful for every day or every week helps some people. You can go back and look at it when you're feeling hopeless, and remember all the positive experiences you've had. A synchronicity journal is where you write down amazing things that shouldn't have happened but someone did. A journal of the foods you eat can help you track what is aggravating your physical symptoms, even some mental symptoms. A journal of your feelings or experiences or daily events or just your thoughts or the things you want to talk to someone about when you have no one to talk to - all these things can be useful.

19. Read books by SARK . They're inspiring, creative, and will help you. They take very little concentration to read, and they're very easy to follow and understand, whilst being full of self-healing tips.

20. Learn about your illnesses. Study them. Do research. Join support groups - online or in person. Find out what works and what doesn't work. As the saying goes, the struggle is real, but once you have information you'll be far more empowered than you are without it. Also, if you don't look up the side effects for medications you're on, you might get put on something else that is just to combat a thing that is a side effect of another medication you're already on. This has happened to me. Information is power, and doctors don't usually spend a lot of time with us or have a lot of time to do research on our individual symptoms. I'm not saying Google everything, but learn. I think walking into a doctor's office uninformed is one of the worst things you can do to yourself.

21. Go to therapy. Enough said, it helps.

22. Take a shower every day. Wear clean clothes every day. Brush your teeth every day. Brush your hair every day. I know when people are really sick it's easy to not care about such things, but once you do them, it really makes you feel better about yourself. I used to go to work without showering, and I didn't care because I was so apathetic all the time. I've read posts by people on Facebook saying they don't brush their teeth at all or that they can't take a shower at all. You must make hygiene a priority. Trust me, bad teeth aren't cheap to fix and neither is getting them pulled out of your mouth.

23. Get out of toxic support groups. I had to leave one again recently. It was an online group being moderated by someone who constantly brags about their illegal drug used and recommends it to people, and who does other dysfunctional and mean things to people in the group. It's not a support group; it's a dysfunction group. Many people would go there to say that they felt suicidal and then wait to see how many people said, "don't do it!" because they are so passive aggressive and attention-seeking. I think it's cruel and unfair to others to go on the internet and let people assume you've killed yourself so they have to track you down and send the cops to your house. What kind of support group even allows anyone to do that? I don't want to be part of such a group, so I removed myself from there. If you join support groups online, make sure crap like that isn't going on unchecked.

24. Set your intention for the day every day. Get up, think, "I will........" or "This is what I'm going to do today......." etc.

Okay, this post has reached it's time limit. I have a therapy session to get too!


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