Tag: writing

Pain, connectivity, and paranoia

by Midnight Demon, posted in blogging, chronic physical pain, depression

Scrolling through Facebook while waiting for my pain meds to work. I have been in pain for the past half hour and spasms have just started. I am miserable. I knew I should have taken something sooner as when I got back to my room after having coffee at my sister’s, I felt something in my foot. It’s so hard to know when to take pain medication. Sometimes you know it is going to turn into something bad and other times it just goes away with rest. I am so annoyed with myself.

Then I get a tweet from Sprint, my cell phone carrier about the ongoing issue I have been having with 3G/4G coverage. Seems if I leave my house, I just have 3G and it messes up with my phone data. Sometimes I will get email and other times I won’t. It’s not like I really need to respond to email now that I am not working, but I would like to know when I get a new message. I like staying connected. But it seems if I leave my house, I don’t get the same coverage and it pisses me off because I have to manually change my settings in order to save battery. If I don’t have 4G, I lose battery power while it searches for it before it decides to finally go to 3G. Sometimes by the time I get home, especially when I go into town, I will have 50% or less battery power to last me until I get home. I know that going on the trains drains it more as I don’t have any signal in the tunnel but while I am traveling the city above ground, I should have no connectivity issues. My phone is fairly new so there shouldn’t be an issue. Granted I am due for an upgrade but other than a Samsung galaxy phone, I really don’t have an interest in any other phone. My brother in law has the galaxy and has been having issues with it. I hope that when I upgrade to it, the bugs have been fixed. But then he is on a different carrier than I am so it might just be his network. I have no interest in an iPhone. I like the Android operating system on my phone.

Spasms seem to have stopped now. My big toe isn’t curling like it did. Thank god for Ativan. I do need a nap now but I am trying to resist. I still feel like calling my psychiatrist but it’s Sunday and I don’t want to bother her. It’s not an emergency. I just feel the need to talk to someone. I am still having trouble processing my grief. I keep thinking about the days with my aunt and how on her 90th birthday, I didn’t get a picture with her. I thought I did but I didn’t. It was hard because everyone kept going to the birthday girl and we had this crazy DJ that wanted everyone to dance, ALL THE TIME. He was very enthusiastic in his job but come on. No one likes to dance for two hours, straight!

I do miss my aunt. I miss going over her house like I did when I was a kid. But then she moved and it was difficult to see her because I didn’t have a car to get to where she was.

It’s weird. This is the first time that I am not paranoid I am being watched by my aunt. When my other Aunts and uncles passed away, I felt like I was being watched by them. This time it is different. I don’t know if that is because I am taking medication to control stuff like that or what but it is different. And I am glad I am not paranoid. It is difficult to shake paranoia. You really need to take extra meds and constantly tell yourself it is not happening. It’s almost like a delusion that you have to undo to make it stop happening. Not always easy because voices are usually present and they love to feed off paranoid delusions. But I am not feeling that way. I still have the voices that are constantly watching me though. We converse sometimes but it has been less. It usually picks up if I am just staring off into space. Then they start talking to me. It’s weird.

Today I have decided not to do anything. I am not working on my book or changing my sheets. I will do one of those things tomorrow. Though I have to take off the stuff on my bed. I don’t know how I accumulate so much paper, books, and journals on my bed. I just have a few shirts on my bed just in case I get cold. But other than those articles of clothing, the rest is all paper pads. I don’t get it. I mean I use it, don’t get me wrong, because I am always writing something. And I need my journal on my bed so I know where it is when I want to journal. But the other stuff, man I don’t know how it accumulates. I just need one pad of paper, not three! Thank goodness I only sleep on one side of the bed and stay there. I am usually a sound sleeper, though sometimes I am a light sleeper as noises will wake me up. I hope when I change my sheets this time, I don’t have so much stuff on my bed. It’s a pain taking it off and placing it somewhere in my room. I have piles of stuff every where because I don’t have the space to put it.

rambling 65

by Midnight Demon, posted in blogging, depression

Had a long day today. The wake that was four hours long seemed to take forever to pass. I just wanted to crawl back to my cave and sleep. It really hurt seeing my aunt in the casket. I don’t believe she is gone. But like the priest said tonight, though we say goodbye to her mortal remains, we hold on to her spirit or something like that.

I emailed my psychiatrist because I need some support right now. I am losing my mind over my father’s health issues and have no one I can really talk to about it. I won’t go into detail here about it as my family would flip if they read my blog. I just am feeling very burdened about the state of what to do and this waiting for his scan results are killing me. I won’t know until Wednesday what they are. I know it is only a few days away but damn that is a long time when you have people tell you your father doesn’t look right. I just feel so awful knowing this stuff. Then after the wake, we went out for dinner and my father had two beers. I wanted to kill him right there. He isn’t supposed to drink at all because of his liver issues. I am more than frustrated. But I didn’t want to cause an argument so I kept my mouth shut. He still thinks he can do whatever he wants, fine. But I don’t want to witness it. I could swear right now but I won’t.

The other thing I don’t get is that you are supposed to grieve at wakes so why is it when you cry, people tell you to get a hold of yourself?? Isn’t that the whole idea of wakes?? Pisses me off. My aunt was a wreck when she saw us came in and when she started crying, I couldn’t hold back the tears. It was just a jerk reaction. I am a weakling when I see people cry. Even if I don’t know them I will cry with them. Sometimes that is all I need to open my flood gates. But I know that I can’t hide in a corner and cry alone. But I guess if I feel like doing that I should because god forbid I let someone see me grieve in public. I just find it frustrating.

I texted my therapist that she is going to have a shit load of letters as punishment for being on vacation. I would have written one tonight but I am too exhausted. I am still fighting sleep just to write this blog. I am glad that my psychiatrist said that she will be there should I need to page her. I don’t see her again till the 10th. But I might check in with her sooner than that. Probably after I find out about my father’s scans. Even though I take Ativan, I don’t think that will cause me to worry less between now and then.

I am hoping my leg isn’t sore tomorrow. I had to have the AFO tighter than usual so that I could pull down my pant leg on my Khaki’s. I would wear dress pants tomorrow but it is going to be cold and snowy. Another snowstorm is in the mix for the day. Just wonderful.

a little of this and that and transgender too

by Midnight Demon, posted in Chronic pain, depression, suicidality, transgender

Had a horrible day. Spent the entire late morning/afternoon at the hospital with my dad. They still have no idea what is wrong with him and it is starting to piss me off. I feel like my father is living my life in the “I don’t know what is wrong with you” circle. He had some scans done and we will be back next week to find out the results of those scans. Just lovely. Another day of boredom. I will be bringing my laptop and my manuscript so I will have something to work on while waiting for the doc.

I got to talk to my cousin today. Found out my aunt’s wake is tomorrow and the funeral is Saturday. Not looking forward to it but you have to show up and pay respect and say goodbye. It’s going to be a sad day for me.

I am pretty exhausted from today and in pain. I was in pain most of the day yesterday so all I did was sleep most of the day and then be up most of the night. I rather sleep during the day and be up all night. I miss working second shift. It was the perfect balance of not being a day person and being a night person.

I talked with my therapist for the last time this week and she is on vacation next week because it’s school vacation. We talked about my book and how it is affecting me and then she wanted to know more about the voices and I flipped out a little. I couldn’t tell her but did tell her that the voice I hear is actually her, well, not really her but her persona or something. I can’t explain it. It is just something that happens to me. I hear a voice and it will get stuck in my head and start talking to me is the best way to put it. That is why sometimes songs get their go around in my head and I can’t stop it unless I take medication. I had this one voice last summer that just wanted to talk to me at night, just before sleeping. And boy, was she demanding. I would nod off and she would get all offended. And the more sleepy I was, the more she would ask questions! So annoying! I am glad she is gone and hope she doesn’t come back!

I have to get dressed up tomorrow. I hate getting dressed up. I don’t have clothes that fit me anymore except for one pair of pants. And it is going to be cold so I have to wear a long sleeved shirt, which because I gained weight, I have only one that fits. If I didn’t have breasts, I would be fine. Things would fit nicely. Pisses me off that I have them. But then I will never be a “guy”. Just in my head I will be one. To the rest of the world I am a FEMALE, like it says on my medicare card I got the other day. How degrading. I could have killed myself over it. But I guess I am getting better at living this double life, even if it is painful. I recently heard that Facebook has changed gender roles. I wonder what that is about. I haven’t looked at it because in my mind you are either a female or a male. I am a male, but in a female’s body. So, yea, I kind of get the confusion. UGH. This sucks. If only we were to choose what we wanted to be at the age of five none of this identity confusion would exist. Just because you are born one way doesn’t mean you are truly that way. Now I feel suicidal because I hate myself so much. I can’t stand myself. I am despicable.

flashbacks and memory lane

by Midnight Demon, posted in cauda equina syndrome, CES, depression, medical, psychosis

Yesterday’s blog still has me reeling. For some reason I still feel like the world’s biggest jerk and I don’t know why. I think it just could be the depression coupled in with the voices. I keep on getting psychotic breaks despite being on medication but this week is my anniversary of my first CES diagnosis. Last night I was having flashbacks. Every time I closed my eyes, I was in a hospital bed. Being in pain last night didn’t help. I am trying to cope with this but it is just so hard to deal with all the time because CES affects everything I do. It’s like no matter what, there is a reminder. Like yesterday I was drinking fluids because my urine has been dark the last couple of days, indicating I was dehydrated. Well, I drank and drank only to leak and leak. Then I had to have a number two and almost didn’t make it to the bathroom in time. People think that I am doing fine because I am not walking around with my walker anymore but I am not. I still have nerve damage to sensitive areas, areas that are not part of the normal conversation. Sure we can talk about walking and standing and shit like that, but we hardly ever talk about bathroom stuff. Only a few friends and family members know that I have this problem. Granted it is not as severe as some one else with CES but that doesn’t mean I have CES any less.

The depression I know will fade one of these days, maybe when baseball returns next month. I just know I am stressed out over this book. I am reading it and wondering if I can truly put out the dirty laundry more so than my blog, because once it is out there, I can’t take it back. Having the flashbacks last night made me realize that I still am never going to get over this. Every year there is some reminder and today my scar is itching. I remember after surgery how nasty it felt to move the muscles around because they weren’t together anymore. I remember not feeling “whole” anymore because I had stitches in my back and pieces of disc taken out of me. You never know what that is like until you go through it. Sure people have surgery all the time to take the bad stuff out of them that is causing them disease but they hardly have to face it again and again. And I got CES twice. Lucky me. I have had four back surgeries. The first two was done thirteen years ago. The first was to remove the disc that was causing my legs not to move properly. The second was to remove the infection that happened two weeks later. I had a nice staph infection and had to be on strong antibiotics. These antibiotics almost killed my kidneys and liver. I went into kidney failure and they weren’t sure if I needed dialysis or not. It was a wait and see game. Luckily, after they stopped one of the antibiotics, my kidney function tests came down, albeit slowly. It took almost two months for me to have normal kidney function tests after I stopped the antibiotics. I also was very weak as my blood count got really low. To say that I was anemic would be an understatement. I was told I might need a transfusion if my count got any lower. I didn’t want a transfusion as I always heard stories about things that happen, like a transfusion reaction where you reject the blood you are given. I was scared. And I was alone. It took a few nurses and several family members just to get me to consent to the second surgery. I wanted the infection to kill me. But I am glad I got it because the pus pocket was close to bursting and if the stuff got on my nerves, I would really be in bad shape.

Memories such as these keep popping into my mind. I can remember stuff like this but yet I can’t remember if I had breakfast or not. The brain is a funny thing. I guess it just remembers what it wants to. I just wish it would happen during the day and not at night when I want to sleep! But the depression remembers these things. I know that if I was in a better mind set back then, I probably would have been over this a long time ago. But it’s important to tell people that those with back pain can get CES if they are not careful. All it takes is a herniated disc to rupture and boom, you will have this dreaded condition. I just hope that if this happens to you, you get the care you need within 24-48 hours after onset. Or things might be permanent. I was lucky that my CES diagnosis was caught early to reverse the nerve damage that was preventing me from walking. I can walk without a limp but I still need an AFO (ankle foot orthotic) because my foot is still weak, even after all this time. And no matter how many times I have been to physical therapy and there have been quite a lot, I still can’t regain the strength I lost. I am at 90% recovery. The bladder and bowels were after effects. And most likely caused by the second surgery/diagnosis that was at a different level. That happened five years after my first. I was a lot calmer about the second go round than I was the first. What truly helped me was finding a support group (www.caudaequina.org). Knowing that I wasn’t alone and knowing what to expect truly helped me recover and keep my spirits up.