Tag: cauda equina syndrome

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.

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.

Baking and upsetting things

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

I have had a painful day. I saw my father after picking up his dry cleaning. My ankle is killing me because I then baked cookies and then cleaned up the mess, washing dishes/pans. I thought I would bake two batches, but it was a pain taking them off the pan after they cooled that I don’t think I will be making cookies again for a long time. I still haven’t had dinner yet. I am too full on cookies and cookie dough. It’s hard not eating the dough while making cookies. If someone can not do this, I give them credit. I didn’t substitute the oatmeal like I wanted to because you had to sift the flour. They came out very good, even though it was a pain taking them off the pan. Oh, and I used Giardelli chocolate chips, which made them really chocolaty.

Doesn’t look like I will be having a therapy session today. I am still hurting, psyche wise. I feel bad for the people of the German plane that went down. And am very sad that a suicidal person took the lives of 149 people to do his deed. I just never understand it. Then I read today that a 13 year old shot his 6 year old brother to death, injured his other brother, then killed himself. How does a 13 year old get a gun?? Why wasn’t it locked up and out of the reach of their kids? Just kills me. But I still believe the more they show things like this in the news, the more it will happen. And it has. There are more and more stories of murder/suicide today than there were a few years ago. Ever since Columbine, you are hearing more stories like this.

Ankle is absolutely furious with me right now. I don’t think I am going to make dinner. Last night, I ordered pizza, late. I will have that if I can make the stairs to the kitchen. I don’t feel like making a hamburger and then cleaning up again. My ankle hurts too much.

I got a message from one of my friends saying she read something and is concerned about me. Then I haven’t heard back when I responded. I had no clue what she was talking about. I posted lyrics and ordering pizza last night so not sure what is to be “concerned” about.

Well, I just fucked up my checking account. After everything clears, I will probably be in the negative because I paid my cell phone bill, TWICE. I paid online through their website AND through bill pay with my checking account. I totally forgot I did that because my memory is not that great anymore. FUCK. I am glad I checked my account before I made any purchases. Oh this blows. I really thought I would have money to give my brother in law for his birthday this year but it doesn’t look like I will even afford a fucking card. I swear I need a CPA or someone to manage my finances because I fucking suck at it. Just when I thought I was on top of things. Least I don’t have to worry about a cell bill next month. That is an extra $90 in my pocket. Now I wish I didn’t purchase my sneakers.

I got my eye appointment tomorrow. I hope the copay isn’t $40. I will be screwed, but I got to get my eyes checked. I have already made an appointment and canceled three times. I can’t do it again. I know I will need new glasses. That’s an expense for next month. I really want to get glasses with either polarized lenses or just get glasses and a pair of sunglasses. I don’t want to get transition lenses again, even though I really like them. I just can’t afford them this time around. Last time I got glasses it cost me $600. I am hoping it costs half that this time.