Tag: cauda equina syndrome

you never loved me like I loved you

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide

You never loved me like I loved you

I am listening to Brett Young because his song “Mercy” is in my head. I am feeling low. Despite the soundwaves bothering me, I am listening to music because I need the distraction. I wish I could say that I had some kind of day but I can’t. I’ve been sleeping most of the day. I have no recollection of when I went to bed. I know that I took heavy duty drugs as I feel so hung over. I said in a tweet that I “OD” on gaba but whatever I took was not gaba as I was so out of it. I wet my underwear because I woke up too late to get up to pee. When I did get up I was a fucking zombie. I really haven’t drank anything. I tried the last few hours as I needed to take some miralax as the bowel have been stuck. Now that it’s about midnight, I think they are going to unleash.

I thought about telling either the psychopharm or therapist or both about what happened last night but I don’t think I am going to be cause I am too afraid of being punished. Or worse, being forced into another hospitalization. I am not saying I don’t need to be in the hosp, I probably do, but I don’t want to go there because my ankle is being a fuck right now and if I can’t control it with my meds at home, there is no way I would be able to control it while on a unit somewhere. Worse case is that the NP restricts my meds to a two week thing which will suck. I am so afraid of that happening because I am so suicidal but I don’t have any intention of overdosing on my meds. I just want to take ginger or a knife to the chest to end things.

Last night I was curious on how my psychologist friend died. I did a google search and found out. I wish I didn’t. He died by suicide. I broke into a million pieces. He is the second friend of mine to die this way in the last five years. I wish there was something I could have done to prevent it. He had been posting just once a day, which is kind of not like him. I met him on Twitter. I even went to his office to drop off cookies. We talked about cooking and stuff. He loved to cook. He sent me this awesome Christmas recipe for a cake that I love so much. It is Nantucket Cranberry cake. It is so damn good. I am hoping to get some ingredients tomorrow for my chocolate zucchini bread. I want to give some to my therapist and to share some to my friends on Thanksgiving. I don’t think she will mind a few pieces gone. Least, I hope so. I would make two, and maybe I will. I have never been good at separating batter so I might have to make it twice so I can have some for breakfast. I really love it. Sucks I was out of it today as I wanted to make cookies. Guess it will have to be another day for that. I just want to make the zucchini bread and that will be all. I think I can do it both at the same time so I don’t have to wait for one to be done for the other to go in the oven. HA. Genius!

feeling hurt and exhausted

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide

Feeling hurt and exhausted

I’m going through a little (or maybe a lot) of gender dysphoria right now. Yesterday at the occupational therapy appointment, the therapist asked if I was going to have bottom surgery. Why the fuck do they need to know these things if this is NOT the reason I am seeing them!?!? If I was thinking or had it done, don’t you think it would be in my fucking record??? I am getting so pissed at handling this and then she said that there are a few doctors that work with women with spinal injuries. I went from being a male to a female in one fucking sentence. I am feeling so suicidal about this. I really don’t want to go back to the hospital where my care is at. It just hurts too much to be exposed this way.

This might sound sad but seeing as my therapist doesn’t want me to text her mundane things, I have decided to send those things to my alternative phone. This way I still get whatever I need to get out and there is no repercussions of whatever it is I say. I won’t be sharing this information with my therapist. There is no point in letting her know how pathetic I am.

Ankle/foot pain exploded about a half hour ago. Pain is a 14 right now and all I can think about is death. I emptied my bladder so I shouldn’t have to pee any time soon. I hope so anyway and as much as I want to drink right now because damn mouth is dry, I am not going to. I am sucking on lemonheads candy. Probably not a good idea it being right before bed but I don’t care. Sour taste can distract from pain so I am going to use it.

Next week I got appointments for the behavioral therapist, the NP psychopharm, my therapist, and the OT. Tues I see my therapist and then I won’t see her for two weeks. I get a break from her. She is out for the holiday and then she is leaving the country for a week. Totally messed up my plans. The day I see her when she is back is the day I wanted to end therapy or at least have a better idea about it. I am hoping to end things before my next birthday. I really don’t want to be a year older. It’s weird that I feel like I am twelve yet I also feel like I have the body of an 80 year old. Just feel like things would be better if I were dead.

I got an app thing where I can send texts now from my laptop. I’ve always wanted to be able to do that. I am such a geek.

You are king so go into the light…

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide

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.

chess club and other stuff

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

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.