Category: chronic physical pain

Easter 2015

by Midnight Demon, posted in blogging, cauda equina syndrome, chronic physical pain, depression

Easter 2015

I had Easter dinner same as always, at my sister’s house. And as usual, I overate. I couldn’t help myself as there was a lot of good food and goodies afterwards. I feel like I should nap, but I did that last night and then woke up around midnight. I even had a cup of my coffee and I am still sleepy.

The day would not be complete without an insult from my father. He said my haircut was lousy. Instead of wearing a hat like I usually do, I decided to fix my hair with gel. He never has a nice thing to say to me. I don’t know why I bother sometimes. I told him thank you after he told me my hair was lousy. It is growing out so of course it looks lousy. But did he really had to say that? Of course he did, because the man doesn’t know how to give a compliment to save his fucking life.

Last night, as I was trying to relax and snooze, my phone was blowing up with text messages. I was really like who the fuck is texting me. I knew it was from Twitter because they were successive texts. For some reason, if the text message has a new emoji, I will get up to 3 messages for the same text. It is so annoying to have the message broken up this way. But I have no control over it. I checked my messages and the person blowing up my phone were all direct messages from a dear friend of mine. She was telling me all the reasons why I should be here and that she needs me to be here, etc. I had messaged her the other night when I was in a bad mood. So she wrote a lovely, albeit multiple, message about all the reasons I should be here. It was really sweet. I haven’t responded yet because I am trying to think about what to say.

I missed the weekly BPD chat this week because I was spending time with my family. For some reason 4 pm comes very quickly on Sunday, no matter what I am doing. I like attending these chats because I know many BPD people and it always gives me insight into trying to understand where they are coming from.

I didn’t sleep as late as I wanted to today. I kept on waking up every couple of hours. I don’t remember the last time I slept more than 5 hours straight. I keep waking up due to pain. I can’t seem to sleep on either my left or right side or on my back. And I can’t sleep on my stomach because that is not good for my back. So I am constantly waking up to change position. It totally sucks. And don’t get me started on relieving my bladder. That starts around 0630 and continues until I wake up. Then I don’t go again until I drink a lot of fluid, which could be hours. It amazes me that I can pee three times, without drinking a drop of liquid yet when I do drink, I don’t pee once! Fucking CES.

Since writing the rant of CES the other night, my stats have gone through the roof. I am a number nerd so I keep track of my numbers. I still want to pass my one day view of 172 one day. But the closest I have come is 118 views. But my goal every day is to have at least 20 views a day. I am happy with that. Anything more than that is a gift.

Religious Freedom Act and other things

by Midnight Demon, posted in Bipolar Disorder, chronic physical pain, depression

Religious freedom act and other things

This act makes me sick. It is a downright discrimination against my sexuality. It pisses me off that I cannot openly share my loved one with someone in those states that have this act passed. No matter. I am boycotting these states, like most people are doing. I am just grateful that no major baseball teams are in these states. I would not be watching their games. I guess I can also boycott the Indianapolis football games as well. I guess the separation of church and state doesn’t apply to homosexuality. Just about whether the word “God” should be in the Pledge of Allegiance.

I saw my father today. He is not feeling well. I hope he gets better soon without the aid of seeing a doctor because I hate his PCP. I know he will say he has a virus but as far as the pain goes, I am clueless. But then my sister was telling me he was lifting some bags from Boston to his home so I think he might have strained himself a little bit. He is 83 and still thinks he is young to do all these things. What can you do?

Last night, I was wicked hot. So hot, I had to turn on the ceiling fan and now today, I am freezing. I was out in the cold for about a half hour because the bus was late, as usual. I was going to go to the Super Stop and Shop to get my prescription but I don’t think I am going to. I will go tomorrow. I am super tired anyways. I didn’t sleep well again last night, despite going to bed at a decent hour. I must have woken up at least three time after 3:30 and then I was up every stinking hour. My app alarm kept going off, reminding me to take my pills. I just couldn’t get out of bed to do so. I still am tired. I might go to bed soon after I finish this blog. I can’t stand being this tired. I didn’t have coffee today. I didn’t have time to make it. I thought about getting it at Dunks but the last time I had their coffee, it was a waste of money. I didn’t like it at all. I am getting hungry. I should make a couple of hard boiled eggs for my dinner. My mother is at a birthday party so I know she won’t be making anything for supper. Another reason I need to go to Stop and Shop. I still want my fish and chips!

My mood is in the toilet. I just don’t want to do anything. I tried to watch the baseball game today, hoping it would get me in the mood, but it didn’t. I just am really tired all the time and want to sleep. I’ve had a busy week, though I didn’t really go out every day. It just felt like I was doing something nearly every day. I am just exhausted from fighting pain all the time. That is a full time job in and of itself. Except you don’t get benefits or get paid for dealing with your pain. You just get exhausted and cranky. My sister called me and told me to come to the party my mother is at. It’s my cousin’s birthday party but I really don’t feel like seeing the family, again when I saw them on Sunday for my brother in law’s party. My ankle is throbbing and I just finished getting undressed and into my pajamas. I really didn’t want to get dressed again.

Rant of Doctors about CES

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, chronic physical pain

A rant on doctors (CES)

You are diagnosed with Cauda Equina Syndrome. A misunderstood syndrome that is a medical emergency. Yet the doctors never provide adequate after care. They think that once the surgery is done, you should be healed. They don’t tell you it could be up to 2 years or more before recovery is seen. Meanwhile, you become an infant. You have no bowel or bladder sensation. Are given catheters and told to do your own bowel program. I have tried this and has taken me 13 years to figure out what to make me go and what doesn’t. I was fortunate that I didn’t have to use catheters but I know others that do. What really pisses me off is that there is no help dealing with this syndrome mentally. It shatters you to the core. The pain that is dealt with is intolerable. The burning, the zaps, the throbbing, the stabbing. It never ends. You might get relief for a few hours but most of the time you have to learn to tolerate the pain. You want to give up and when you tell someone this, you are thought of as crazy. People don’t understand the mental anguish chronic pain has on you. I am feel so bad for those that didn’t have the help that I did while I was in the hospital. I was on suicide watch a few times but I got through it. I still have strong suicidal feelings because I just cannot tolerate pain any longer. But I am still here, despite these feelings.

Doctors don’t know everything. You may have to see several different specialists to deal with CES. I would strongly recommend finding a psychologist or therapist in your area to help deal with the debilitating pain, disability, and loss of self. Whatever you were before CES, it is now gone. You will never go back to that life. I will never be able to walk a 20 mile walk a thon because I can barely walk around the block without severe pain. As tough as it is, you must get used to this new life. There are no doctors that specialize in CES. Some have never even heard about it and if you look it up in a textbook, I am sure it is just a small paragraph. That is what makes this syndrome so damn frustrating. You have to see a neurologist if you want the best care. A GP or internist is not going to be helpful. Finding someone to listen is also key, though it may be hard to find. Don’t give up looking. They are out there! The weird thing is, as I was in the ER unable to walk, surrounded by neurologist residents and neurosurgical residents, not one of them told me that I had CES. It was my psychiatrist that told! I paged her at 4 in the morning to talk to her and get her opinion on what to do next. I needed to hear her voice because I knew she knew what I had. I have been lucky that both of my CES surgeries happened in the early stages and within the timeframe. Otherwise, I doubt that I would be writing how I recovered. It took a long time to get use of my legs again. I went from walker to cane to AFO to nothing. It didn’t happen overnight. It took months of rehab and perseverance. If I can get through the pain, you can too.

late night, wicked tired

by Midnight Demon, posted in Bipolar Disorder, chronic physical pain, depression

Late night, wicked tired

Last night, despite being tired, I was unable to sleep till almost 0230 in the morning. I had been up almost 24 hours. Hyde came out but I think I removed the damage he might have caused. Though, I haven’t gone through my Twitter account to see if he left any messages there. From what I remember, I went south, fast and furiously. I was suicidal but had no intent on going through with the thoughts. I was just too tired.

I sent an old blog post about body image to my therapist. I wish I didn’t. OMG she just did not shut up the whole session. I don’t remember what it was about, I just tuned her out. She just kept rattling on and on about Teflon shields. I was getting pissed. Then I called her a bitch, which she thought Jack did. She said I can’t be “hitting him” anymore. WTF does that mean?? I never hit anyone, unless it was my sister and I was pissed off at her, but that was when we were kids. Never in my adult life have I hit someone in anger. Maybe in joking around, but that is all. A slap on the hand or a slight punch on the arm, that sort of thing. But I don’t intentionally go around hitting people, for fuck’s sake. And Jack is not someone I can hit. He is too angry and might kill me. So what the hell she was talking about, I have no fucking clue. She also wanted me to talk back to my mother. Yea, that will happen when hell freezes over.

My mood just turned bleak and if I make one more typing error, I am done with this blog. I am so tired I can’t type. Sure I am fixing them, but the errors are making me angry at myself. No, this blog doesn’t have to be perfect but it drives me crazy to misspell something. But getting back to my mood, I am really down. I am going to either listen to the ball game tonight or watch it. I want to at least try and see if I can get into it. But with this sleep deprivation, I might not last. All ready I want to sleep. I went to my father’s and I was hoping to snooze on the bus but that didn’t happen. I did have coffee today, so that is helping me to keep toothpicks in my eyes.

I have decided that I am just going to eat protein bars today. I have NO energy to cook anything. If my mother makes something tonight, I will eat it. I think she is making pizza as I saw dough thawing on the kitchen counter. That will be good. Last night I overate. I had a cheeseburger and then some stuffed chicken. My stomach couldn’t handle all the food, which is part of the reason I stayed up so late. I felt so sick.

I told my therapist, again, that I am only going to be around for a few more months. She still has not read her goodbye letter because of the anxiety it is causing her. I understand that. I told her she could read my story. Maybe that might be better. As I think I mentioned to Twitter last night, I just am never going to be accepted by society as a male. Hell, not even my own mother can accept that. And that is why things must end. I am not going to live or start another decade living like this, though I really have no idea what “living” really means. My therapist also knows that I have a date though she doesn’t know the specifics and she is not going to. I am not changing my mind this time. I have to do this. I just have to die. I am tired of struggling all the time. I am a man of my word and this is what I have to do.

Last night I wrote my psychiatrist her note. It was exhausting, to say the least. How can you say goodbye to someone you have known for over 20 years. It was the most difficult thing I had to do. I expected it to be longer but I think a page and a half is good enough. I kept telling her to seek help after my death. I hope she does. I also hope my therapist does, too. There are a lot more support networks for clinicians who lose their clients to suicide. I also told my psychiatrist that she isn’t a failure. She tried more than anyone to keep me here. And thinking about leaving her is the hardest thing that I have to do but I need to stay the course with this plan. I don’t want to turn 40. I don’t want to write another book. I just want my ashes to be spread over Chelsea Creek.