You are king so go into the light…
These are the words the voices have been telling me since Tues. I haven’t had commanding voices that were severe until tonight. I contacted a couple of friends and they helped me to get through until the medication kicked in. It has been a week that the voices started. This never bodes well. I know it is because of the stress of the death of my aunt and going to the wake and funeral. My family is very loving so it wasn’t like I was awkward or anything. I just didn’t want to say goodbye to my aunt. It hurts so bad having her gone. But she has been gone longer than her physical body ceased to exist. Parkinson’s dementia made her into a shell of a person that just became silent and I think that was when we really lost her. I feel so bad for my cousins who watched her deteriorate. It must have been so painful and I really hate that this disease not only affected my aunt, but her son and his family.
I seem to have caught the family crud that has been making its rounds to all the family members. I am congested. I took a mega dose of vitamin D and will take another tomorrow to ward off the virus. I had my flu shot so I hope I don’t get a strain that is not in the vaccine. I honestly haven’t been really sick since 2008 when I got double pneumonia. God I was ill for a month and took forever to get my strength back.
Beginning of Dec I have a lot of appointments. I have an appointment with the psychiatrist that was assigned to me when my psych left. If the NP does not give me my Ativan, the way I take it and a 30 day supply, I will go back to him. I am tired of this “discussion” where it is only her points she wants me to see not mine. And I don’t think it is a good idea to mess up someone’s med regimen because of long-term effects. I just cannot tolerate this. I see the NP Monday and I will calmly explain that I understand her concerns but I do not care about the effects.
I hadn’t peed in six hours so I cathed and as I was doing so, it was a long void. I was trying so hard not to clamp off the catheter but a spasm occurred and urine flow stopped. Now I have to try again so I don’t wake up before 6 am. I am going to try in about a half hour or when I am finished with this blog, whichever comes first. I really hate that this is my life now. That I will be having to catharize myself forever now or end up in the emergency room because I don’t have the urge to pee. I feel so humiliated. Just increases the suicidality. I found out today at the OT appt that this is nerve damage. I thought it might be due to medication but she said not according to the urodynamic study. I feel really sad about this. It’s just another nail in my coffin. I can’t take my back constantly being broken down and worrying about facing surgery all the time.
Monday I am supposed to talk with a behavioral med psychologist. I hope it isn’t because my “team” told him I was not compliant with my care, meaning not taking my medication or skipping appointments, etc. I go to mostly all of my appointments except if there is good reason not to, like feeling sick or being in pain. I just am having a major problem with the urine thing because it just screams at me that I am disabled where before I knew I was but I really didn’t want to face it. Now it is staring at me in the face and I can’t deal. The depression is making me feel like I would be better off dead. And now the voices I should just take a bottle of pills so I can be king to go into the light. I have already decided I am going to end my life before my next birthday. It is just a matter of time and a few weeks away. I just hope I don’t end up back in the hospital when I see the NP next week. I don’t know if she will think going into the hospital will be a good idea and I hope she doesn’t because it is NOT a good idea, especially before a holiday. Just really bad to go into the hospital around a holiday.
Sunday night I realized I was an absolute idiot. Even though going out to play chess was probably good for my mental health, it was not good for my physical pain. I had a very rough night sleeping. I sent some texts to the therapist and I saw her that afternoon on Monday. I got dressed up because I didn’t want to get dressed twice but that ended up happening anyways as after therapy, I went into my PJs for a nap that never happened. I never showered. I just couldn’t be bothered. I was and still am so profoundly depressed. I thought things couldn’t get possibly worse and they did. Tues morning while at the church, I read one of the psalm books and it had the word “breaking” in it. Well, my brain just saw the “king” part and the voices started chanting “you are king, go into the light” over and over and over again. I sent a message to the NP. She wanted me up to 6 mg but it was going to take a few days to work. I told her I have no idea if I have an infection (I don’t) but the uro wanted to do a urine culture. The NP said she thought about ordering other lab stuff and putting me on another medication. She was going to be away the rest of the week but would monitor the message system if I should send a message. I did tonight as the voices are still saying “go into the light” though I have no idea what the fuck it means and it is on a fucking loop that is annoying the crap out of me. The meds are working as I feel more sedated and less agitated than I was. Other than the voices kicking up, the funeral and reception went well. I spent yesterday in bed. I didn’t do a damn thing. I was supposed to have therapy today but decided to cancel. I am glad because the occupational therapy appointment took so much energy from me and then I went grocery shopping which further taxed me. I am so wiped out it isn’t funny.
I was hoping my writing was going to be a little more frequent but some days I can’t write. I had so much emotion that I was just overloaded and couldn’t get my thoughts out but then, when you are actively psychotic, it is so damn hard to think. I got to ask my therapist how old she is, well at least if she is younger or older than I am. It is bugging the crap out of me. She freaked out when I told her the year I was born. I don’t understand why as she has my record in front of her. Makes no sense. The professionals I see are always shocked when they see my age. They will say, “oh, you’re 43? I thought you were 20 something.” Um, hello. I am not lying if you have my record there in front of you! I know I don’t look my age (don’t act it either, LOL) but come on.
As I was walking back to the area where the shuttles were to the train, I just crossed the street. Didn’t look and almost got hit by a passing car. I was like oh shit. It was a cop car too. I am just glad they didn’t give me a ticket because I didn’t cross at the crosswalk that was like 20 feet away from me. I still have this heaviness in my heart left by my aunt that passed. My cousin sent me a pic of my godfather last night. It was a pic that was taken at my cousin’s house way back when his kids were little. I miss him so much too. He has been gone for about 6 years or so now. I know he would have accepted me as trans. He was such a good guy with the kindest heart.
Chess club and other stuff
Back in Feb I seen a post or an advertisement for chess club in the town next to mine, right on the town line. I have been meaning to go and when my office got emptied, I found a chess game I could donate. I made contact but it was Sunday afternoons and usually I am waking up around the time the club meets. It has been a real struggle to go but today I finally did go. I donated the chess game and played two games with an Irishman who was here looking for work. He didn’t tell me what kind of work he was looking into but it was something that he has a Master’s degree in. I lost both games, which I knew I was going to. It is extremely hard for me to win and I wasn’t feeling so great. My thinking is off because of the increase in Invega and just being sleep deprived as I woke up at 4 and didn’t go back to sleep until after 6. I slept for a couple of hours before my body said no more though my brain tried to plead for a little more sleep. It was denied so I got up and puttered around to get ready. I had 2 and a half cups of coffee. I would have had three but I just couldn’t finish it. There was an aftertaste I just couldn’t get past.
I sent the therapist a pic of the blog I wrote. I told her I was going to try and go to the chess club later so there will be pictures. I hope she is not going to feel pressured to get a chessboard so I can teach her to play. I am feeling so lousy I really don’t want to be teaching her anything right now. I am starting to get worried that I am headed for a psychotic breakdown. During the night I sent a message to my urologist about my bladder spasming while cathing. I asked to be put on a medication for spasm and she put it through. I got the message when I woke up. She also wants a urine culture. Fuck. I don’t want that. I am not going to do it. Told the therapist this as well.
I sent a message to the NP psychopharm. I told her I was at the 6 mg of Invega for now and then we can lower it after this stressful time passes. I sent a message to my psych but never got a response. I don’t think I will because I am not under her care right now so she can’t do much right now, which sucks. Told her I haven’t been eating much and that some days are just Ensure and Gatorade, if that. Honestly don’t think the new med changes are going to do anything. The Invega might make me hungry when I take it with the gabapentin but those two together are trouble when it comes to hunger. It makes you feel like you’ve never had food before. I hope that doesn’t happen but we’ll see. I also hope the increase in Invega doesn’t give me side effects. I have been feeling dizzy but I think it has been mostly from not eating. But being drowsy isn’t. I am going to take the med tomorrow mid afternoon before I leave for the wake so that it makes me tired and I can sleep when I get home and hopefully not have a hangover the next day as I got to be at the funeral home by 9 am. My foot has swelled up so the next two days are going to be killing me. Figures I would have a flare now. Trying not to get ahead of myself because that isn’t going to help the anxiety.
It’s 5 am
I woke up an hour ago to pee and couldn’t go back to sleep. So I am writing hoping that does the trick. I had posted in my support group for cauda equina about me having to bring my catheter bag with me to the wake and funeral. I really don’t want to but if I need to go, well, I need to go. I can sometimes go on my own but other times, it is a hit or miss, with a miss being I need to cath. I am so nervous about this. I think I am going to call my cousin later this today to let her know just to ease my mind a bit, though her knowing what the bag is for might cause things to be uncomfortable for all. I don’t know. I didn’t think of that scenario. Fucking stupid bladder!
I did what I wanted to do yesterday. I ended up showering Friday night because I just couldn’t take my hair being dirty anymore. Then yesterday when the pharmacy was open, I went and got my meds. I also got some of my favorite cold brew coffee drinks. They were on sale so I didn’t mind spending money on them but forgot to buy the M&Ms peanut candy. Will have to go back today. I want to go to the Chess Club today. I set my alarm and will be taking my morning meds later than I usually take them in case I am able to get back to sleep. I just checked the bus schedule and, oof, the bus doesn’t run frequently on Sundays. I thought I would be able to leave around 1230 as the club starts at 1300. The bus is at 1155 so I will be a half hour early. Which is fine as I want to check out the coffee shop the club hangs out at. I will see if I can borrow ten bucks from my mother as I don’t have much cash on me. Wish I remembered about the club before buying the coffee stuff at the pharmacy. Oh well.
My foot just exploded in pain for whatever reason. There is a storm brewing in the area so that maybe why. I am not sure if it is today or tomorrow. I just know I am hurting now. I don’t think I will be able to go back to sleep now. The psychosis is still there so much to my reluctance, I am going up to 6 mg of Invega to try and stop the psychosis from getting worse. I just got to worry about side effects and cognitive issues as it might interfere with my writing more. It happened when I was in college. God I hated it because I would read the same paragraph at least three times still not knowing what the hell I read. Oddly, I was taking a neuroscience psychology class at the time. When I told the professor I had to withdraw she understood. I was thankful for that.
I guess my dream of coming off the Invega is not going to happen. Seems every time I feel ready enough to stop taking it, shit like this happens. I know it is always a risk when my mood is getting bad or is already bad. Sometimes the psychosis is not congruent with my mood so there is that. I did check my “issues” and seems the NP took off BPD and just left the Persistent Depressive Disorder, which used to be known as Dysthymia. That does fit into what I have better than recurrent major depression. Either way, I do have a depressive disorder and calling it whatever doesn’t change the fact I have it. My skies are always going to be gray no matter what it is called. I am just glad the BPD has been taken off my record. I have certain criteria but I don’t meet enough to have the disorder.
I am going to try and nap for a bit. I got five hours before I need to get ready. Hope to sleep for at least 4 hours. Wish me luck!