Category: cauda equina syndrome

A Blog About a Paper and Pain

by Midnight Demon, posted in blogging, cauda equina syndrome, CES, depression

Wrote a paper about suicide attempt survivor’s reaction after reading a research article about it. A friend wanted me to write about it but I am having a hard time because this research just justifies the fact that I should be dead by suicide yet I am not. This paper feeds into the feelings I have that I should not be living. My therapist also wants me to write this paper but from the perspective of what it means to be the exception and not the rule. Yet you cannot defy statistics. Statistically, I should be dead and that feeds my self destructiveness all the more.

Lately I have been thinking about my suicidal plan. It has been on my mind all week. The constriction – blinders – have begun to settle in on me. What does this mean? It means all that I am thinking about is ending my life. It is becoming my obsession. I am writing this on a notepad that I have had for a while now. In it there are two entries about how bad my life is with pain from LAST YEAR. There have been too many nights of pain. So despite the day being pain free, sort of, and my mood being slightly content, the night produces the midnight demons that are bringing me thoughts of self-destruction, of suicide.

Yet I feel that I am a hypocrite for belonging to an organization that is for understanding and preventing suicide. The premise is that if I learn about suicide and the more I learn, maybe it will decrease my urges. But everything that I learn goes out the window when the constriction is in high gear.

Like Mary Chapin Carpenter says, it don’t take much to be happy. But for me it’s like a hurdle. What makes me happy is having my Starbucks coffee at Starbucks, writing in my journal while there, and blog. The only problem is that this happiness doesn’t last. It doesn’t sustain me. Sometimes the feeling my therapist has for me makes me want to live because I know my death will bring her pain and sadness. That is not what I want to do. But I also don’t want to be trapped into living by bringing others joy just by me being alive. I can’t live just for others when I am suffering so much.

My therapist and I have been trying to get to the roots of my suicidality. Mostly what we came up with is that I felt like a burden to my family since I was eight. I started hearing voices when I was five. They have been my constant companion throughout my life. In addition, I was made a girl when I am a boy. That brought me great pain when I realized this. At age ten, I had my 1st suicide attempt – I tried to suffocate myself with a pillowcase. I just see life as pain and I so want to escape from that pain. No medication numbs it or relieves it and now that I am in physical pain, I feel like I am being punished for all the sins I ever committed. Despite asking for forgiveness, I am met with more pain.

Went to the Mary Chapin Carpenter concert last night. She was playing with Shawn Colvin. I didn’t like Shawn too much. All I heard from her was “blah, blah, blah”. I am still hyped from the concert, I’m blaring (softly as it is late) all of Mary Chapin’s albums.

When Mary Chapin played “the hard way” it was like she was telling me that I was on the right path but nothing comes easy. I listened to the concert with hope, sadness, and hopelessness. I was hoping MCC might change my mind but I realized I will let myself down if I don’t kill myself this year. It’s like what went on in 2005 when I planned everything but botched it up when I told my therapist (same one I have today). Now my therapist knows I have a date and that means it is going to be harder for me to go ahead with my plans. I don’t know why I feel I have to do this. I don’t. I can walk away from this and never go back but I will feel a form of defeat one feels when they break an internal promise to themselves.

I realized last night that part of the reason is because I don’t have confidence I’m always going to get my pain medication and that scares me. Because if I can’t get my pain pills, then I rather be dead. It’s not that I am saying I NEED the pills, I am saying that if my pain is not going to be taken seriously and treated with serious meds, I am going to kill myself. Because I cannot bear the thought of suffering and having pain flare up and not have anything to take. If Tylenol worked I would take it. If Ibuprofen worked, I wouldn’t need it. If ketoprofen helped, I wouldn’t need it. The only thing that helps is opioids.

So without my pain meds which have the affect of actually taking away some of my physical pain, I want to die. Yet I also want to die because I have chronic physical pain that makes me have to take pain medication. I guess I just feel that it’s not ok for me to get pain relief. I feel it is a hassle because I have to see my doctor every month and when the pain levels vary due to increase or decrease in activity for the month, I feel like I don’t deserve the meds. My doc gives them to me. He has never denied me my meds. Yet I fear that one day he will not for whatever reason. And that is the reason, well one of them anyways, why I feel I should be dead. I should just be dead. My pain cannot be cured. It cannot completely go away. I am sick of being in pain all the time. Sure the physical pain goes away with meds but the nerve pain does not. And that is what truly makes my life intolerable.

more about nerve pain

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

Watched the baseball game. It went to the 10th inning and my boys came through. They beat the Rays 2-1. It was the first extra innings game this season they won so I am hopeful for the season. The Sox improve to 6-4 and still are leading in the AL East.

Was happy to get an email about the blog I write for the American Association of Suicidology has made the news http://hosted.ap.org/dynamic/stories/U/US_SUICIDE_SURVIVORS?SITE=AP&SECTION=HOME&TEMPLATE=DEFAULT&CTIME=2013-04-13-12-09-11.
It was good to see something come off of the hard work of the AAS president, Michelle Linn Gust to get the blog underway and now we have a voice.

It is not even six o’clock yet and I am exhausted. All I did today was run to the pharmacy to get my prescriptions and go up and down the stairs a few times to help my mother with some groceries. I have been up since seven. Seems I cannot sleep later than that. And I even stayed up late too. I didn’t go to bed until around midnight, after watching Lincoln and reading for a bit afterwards. I kept on going on twitter and facebook to wait for my meds to kick in.

Last night my foot acted weird because of the CRPS, complex regional pain syndrome. It got really cold, like ice and really painful. I put on some socks that were heavy and still my foot was cold even under my blankets. My bones were hurting really bad and if I had a chain saw, I probably would have used it to amputate. That is how bad the pain got. Then after it warmed up, it really warmed up. It got really hot and felt like it was on fire. I had to take the sock off and leave my foot hanging off the bed away from the sheets and blankets because it just was burning me. Nerve pain acts this way. The doctors don’t really understand why this happens. I am seeing a specialist on Tuesday to talk about this. I really hope she can give me some answers. All I can take is pain medication to soothe it or use a gel to try and calm it down some but touching it hurts like hell, which makes it difficult to use the gel sometimes. I find that oral meds work well for this type of pain, but the problem is that most doctors don’t want to prescribe it. I have not run into problems but I know I will soon enough. I’ll get the opioid speech how it is not good to be on these meds long term. But I have been on these meds for almost a decade now and aside from constipation which I control with some senna, I have no other side effects. It might make me drowsy but it’s not like I am operating machinery or driving like I used to. Now I just take these meds when the pain flairs up, which will be again tonight. Every night I am in this horrible pain but it’s never the same. Some times it is bone crushing, other times it is a burning sensation like my foot is on fire. Other times it feels like a barbed wire is surrounding my foot ready to be garroted. I can’t say what will be in store for me tonight after going up an down the stairs four times in a row this evening. I am not looking forward to it and there is no sense in taking the meds early. The pain hit unexpectedly, when I least expect it to so I can’t judge a good time. That is the most frustrating this about this condition. I have a HIGH pain tolerance and it usually isn’t until a pain is an 8-9 that I will feel it. Right now it is simmering on a 4-5 on a scale of 1-10. I have heavy thermal socks on to prevent it from getting cold because it is still winter in New England. My house is cold because my mother doesn’t want to pay a large gas bill, which we shouldn’t have to turn the heat on in the middle of April anyways!! So I try and protect my foot from getting cold anyway I can. But sometimes even having socks on will not prevent my foot temperature from dropping. My left will be cold as ice and my right a balmy 98.6. I hate this condition and wish I never got it but I got to learn to live with it and that is the hardest part.

accidents and other musings

by Midnight Demon, posted in cauda equina syndrome

I kind of feel lousy today. My stomach is not doing well and I had to take a cab home to hurry to the bathroom. I hate it when my stomach gets upset but the alternative of having an accident outside the home is more humiliating than having it in the home.

Funny how many will think of the word “accident” as a car or some kind of vehicle accident than a bowel or bladder incident. I had a few while I was working and it was not fun. I often had to go home afterwards to clean myself up. When asked why I said I had an accident and they immediately thought that I had a car accident. They didn’t realize that I had regressed to that of a two year old. How indignant is it that a grown person has a leaky bladder and when the stools are loose, an accident. I can’t help it. I have lost function of my bowel and bladder so when I get a signal from either I have to make it to the bathroom or I lose my underwear and have to take a shower. But no matter how many showers you take you don’t feel clean. It just makes you feel like a dirty person and it messes with your mind.

I am having an okay day otherwise. My foot (knock on wood) has been ok so far. I am sure it will act up in a few hours when I am trying to watch the game. Stephen Drew is back in the line up tonight. Can’t wait to see his début. Hopefully it will be good and he plays solid defense. Everyone has been commenting on how the Sox have no errors so far. I hope they don’t jinx the team because they are commenting on it. I will be upset.

I still have not talked to the group leader about me leaving the group therapy that I started over a month ago. I think it is best that I move on from that group. It is too triggering and I feel bad afterwards. I just don’t think the group is for me anymore, though the down side is not going by Fenway Park every week. Only reason why I have not done so is because I know he will want me to say goodbye to the group and I am just not ready to do that or think that it’s appropriate. Can’t tell a bunch of people I have to leave because I am getting nothing out of this group and need to move on, especially when some of the members are so close to the edge themselves.

Think I am going to watch Lincoln now…

another day of pain

by Midnight Demon, posted in cauda equina syndrome

Usually after a night of pain, I am ok the next day. I usually don’t have pain until later in the evening right before bed. Today was different. I woke up to my foot still hurting so I made some breakfast and took some pain pills and went back to sleep. I have been sleepy all afternoon since waking up at two o’clock. My foot is still hurting, not as bad so took another pain pill. Now I am ready for a nap.

I hate it when I have days like today. It just sucks because I don’t do anything but stay in my pajamas. I wanted to go out today to get my coffee and maybe write in my journal but that didn’t happen. It’s just another day in the house where all I can do is keep my foot up to stop it from hurting. Having a pain syndrome sucks.

I am very tired from the meds and feel a little dizzy, probably because I have not been drinking enough fluids. I could go to sleep right now and I am going to try and resist.

I started reading a new book. It’s about Lincoln’s first 100 days in office. So far, I think the book is badly written as the author has repeated himself a couple of times with in a few pages of each other. I don’t know if I can get through a book like this. Makes me wonder what the hell the editor was thinking or if he or she even read the thing. The book is supposed to be about the first 100 days but yet the author keeps talking about the Emancipation Proclamation, which is not until Lincoln’s second year, which is MORE than 100 days after he is in office. I’m already confused as to what the author is trying to convey.