Tag: cauda equina syndrome

distressed

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, suicide, suicide attempt

I know I have been writing more and more about my transgender issues and more of my identity crisis that I am. I am deeply distressed right now and don’t know what else to do but write. I started working on a blog for my 400th blog but the meds are interfering with my thought process. I took 2400 mg of neurontin to calm down the horrible burning pains in my foot that I have been experiencing all day. I just can’t take it anymore. I took some of my pain meds with the neurontin and I am kind of feeling kind of out of it but I still haven’t passed out yet. I think I will in a few minutes as I can barely hold my head up anymore as I am fighting the fatigue. I am just so damn upset over the stupid menses. I know that even if I get to my doc there is nothing really she could do. I will still have to wait at least three weeks to see if the next treatment works, that is if I stop bleeding. I would be ok if I would just stop bleeding. It so distresses me and usually I am able to handle it but now this is going on for almost three weeks and I am losing my handle on the rope that is holding me together. I think tomorrow if my flow is still the same I will stop the patch and see what happens. I don’t know what else to go. i will go a few days of not wearing the stupid fucker and see if that helps.

I am deeply suicidal and yet deeply concerned about someone who just wrote to me that she is planning her final affairs. There is nothing I can do to stop this lady, she has her mind set on killing herself. I don’t blame her. I really don’t. There is only so much pain you can take before you finally snap and have to do something to get rid of it. I have been where she is right now. She doesn’t have a good support system and I think she is mad at me in some way that I have abandoned her. I feel bad that I have not called her like I have said before but I just don’t feel like talking. I guess I am afraid of calling a stranger and letting her in my life. I am scared. I once got close to a member of the support group and then she just stopped contact. No more emails, no more phone calls, no messages returned. Nothing. I later found out through her husband that she just got tired of her condition that she became constricted and didn’t want to reach out anymore. It was too painful for her. I lost my friend to this horrible condition because she has the active form due to another dreaded condition that is worse than the other. I would name them but they are conditions that no one really understands. I might as well as be talking about the moon and the stars and how far away they are. I think they name them these big ass names so that no one can understand and push us further apart from the human race.

So Ms. M, if you are reading this, I am sorry that I failed you. I wish there was a way that I could stop you from doing what you are planning but I guess there is no way to stop you. Just like no one can stop me in my planning. I hope that we both succeed. I know that dealing with constant, excruciating pain and loss of bodily functions really suck. I know this first hand. I can’t stand it that someone so sweet could hurt so much and no one notice. It is not fair. But I understand. I really do.

tired of living

by Midnight Demon, posted in blogging, cauda equina syndrome, CES, Chronic pain, chronic physical pain, depression, psychache, suicide, suicide attempt, transgender

I am feeling blah today. I just finished taking a shower and though I feel refreshed, I don’t have any motivation to do anything. I have some time to get my coffee before my therapy appointment in a couple of hours but I just don’t feel like being rushed. Every time I do, I forget something, and usually the essentials, such as the keys to my house!

I responded to an email for my CESSG (Cauda Equina Syndrome Support Group) about physical therapy. I hope that the person doesn’t see a chiropractor. That is how all of my problems started. I think that if I was given adequate pain medication in the beginning of my back pain, I would not have gone to see a chiropractor or if I had stopped once the pain did I would not have ended up with CES. All the ifs that go through my mind, looking back.

I am especially feeling out of sorts today because I still have my fricken, goddamned menses. Just when I thought I was getting over it, it comes back in full force. I seriously am suicidal more so now than I was before. I just can’t take being a woman anymore. I have tried to stop the cycle and I am failing horribly. I am so sad. I hate being in this body. I never am going to be a man. And though I should be possibly reaching out for help, I just can’t. I just can’t bear talking about it with someone because I know I will just start bawling like a baby. Just writing about it is bringing tears to my eyes. It just is a deep emotional reaction. And even though I know there are other FTMs out there, I still feel alone. I just can’t cope with this anymore. I doubt that anyone really knows the frustration of dealing with this. I am trying to cope with it but how do you cope with something you know is WRONG?? I know I should probably go back to my reproductive endocrine doc and be like this isn’t working but why bother? She has been trying to stop this beast and has been unable to do so this past year. My confidence in her is down to nothing. I know I probably should go to the experts and see what they know but this Doc is the tops in her field. I don’t understand how hard it is to stop a fucking period. It just doesn’t make sense to me. And with every mense that I get, the closer I get to killing myself. I am done with it. I just want to die. I am in too much pain anyways. My foot was acting up soon as I woke up this morning. It’s sort of fine now as I took my pain meds.

I just am tired of living. Tired of trying to make sense of all this. I really don’t know what to do about my menses anymore. I wish it was easy to get through this but it’s not. Every time I wipe myself and there is blood I freak out. I just don’t understand why I am still bleeding. It’s been two weeks already. This is my third week. I was hoping it was getting less toward the end of the week but I was wrong. I really hate being like this. I hate feeling like a freak. And nobody understands that I am going to end my life because of it. I wish I knew what I was feeling but all I feel is hurt. I feel pain. I feel hate. Hate that I am not who my brain thinks I am. And I get weaker. I get more tired with each passing day. It just takes so much energy to deal with this. To wear underwear now that are made for females is just killing me inside. I might be called a masculine name but I am far from being it.

what it’s like living with CES, Cauda Equina Syndrome

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

I took a shower today and then had breakfast. I am now at Starbucks having Isla Flores today because they were out of my Kati Kati. I am sad they are out. I don’t know if they will have it again and I am cursing myself that I didn’t buy a bag. It would have been awesome to have at home. I think I am going to have two cups today because it just feels like that kind of day. I am hoping I can work on my book today but I just don’t know where to go with it. I feel like it is already reading but it is only about 50 pages. Not even long enough to consider it a book. It’s more like a pamphlet. If I don’t work on my biography I will work on my lyric book. I started it the last time I was here but I kept on getting distracted and couldn’t so much as copy the lyric into the comp notebook.

I have decided that if I am going to write to my therapist, it is going to be in a comp notebook so that I am not wasting paper, per se. I don’t know if she reads my letters. Most times not because she just doesn’t have the time to read it. Granted the letters are no longer interesting. I no longer have clinical insights that made the letters interesting. I just write about my day, like my blog, and a little about what is happening to me emotionally.

Right now I am so tired, I could go back for a nap. I just can’t keep my mind on track. Maybe writing away from home isn’t for me. I know there are days that I can do it but most often than not I can’t. I have to be shut out in my room to think. I think it is because the voices are kind of shut out. I have the annoying voice back. She has been a constant intruder of my thoughts, wanting me to take more pain medication than I should. I don’t like this voice. I never have liked commanding voices. They scare me.

Today I was thinking about how my living with CES (Cauda Equina Syndrome) has changed since going on disability. I no longer have to think about my bodily functions as much or worry about them as much since I am at home doing nothing most of the day. The days of trying to work two jobs to support myself while constantly being in pain and then in the background thinking about if I will have an bladder or bowel accident are over, least for now. I don’t live freely as sometime I do have a bladder accident or a bowel accident from time to time. I would have had one today had my stools been softer, even though I was home. What I thought was gas was really stool trying to come out. I can’t tell the difference anymore since I lost feeling in my rectum almost seven years ago. It something I don’t talk about often because I know most people think that I am normal. Most people who read my blog do have CES. I don’t have the full-blown version of CES, the complete foot drop, leg paralysis, loss of saddle feeling, loss of bowel and bladder function. I have what I term CES-lite. My CES was caught early both times I got it. I have the weakness in my foot, no ankle reflexes in either foot, and some impairment of the bowel and bladder. I won’t discuss the sexual feelings that I lost because it is painful for me to describe and I have had a tough time dealing with that loss.

I really don’t know how I was once able to work two jobs with the level of pain that I was in. Of course the pain was not as prominent during the day as it was at night. When it started happening during the day and interfering with my work, that is when I had to reevaluate my situation. And I unfortunately, picked the wrong move. I should have stayed with my research job because even though I had work restrictions, my research boss would have been accommodating to some degree. And I could apply for SSD and still work part time. Now that I can’t go back because I no longer have a car nor a good driving record, it really sucks.

Night blog

by Midnight Demon, posted in Chronic pain, chronic physical pain, mental disorders, mood disorders, suicide attempt, writing

this is the first time that I am writing a third blog in a day. I am sorry for the posts but I am in so much pain I don’t know what else to do. I can’t say that I did too much because I didn’t. I just know that my foot is on fire and there is nothing I can do to stop it. I have taken meds to quiet things down and I am hoping with the Ativan I can get some sleep in a little while.

I actually am afraid of sleeping for fear of having that weird dream again. Or another one. I also don’t know why I had an anxiety attack on the bus again. I guess it is getting to be paranoia that I won’t be able to get off the bus at my stop because I don’t want to fall down. My balance on my right foot has been off the past several months, especially when I am turning. I seem to lose my footing because I don’t know where my foot is. It is so frustrating that when I am seen by people it looks like I am drunk.

I got so upset about my menses after my last bathroom break I needed to talk to someone. I just can’t handle this menses situation anymore. I am now bleeding more than I did last week, which technically, I should be bleeding less not more at this stage of the game. I am not a reproductive expert but I know when a period should end. and after seven fucking days, it should be OVER. I should not be continuing to bleed dammit. I am sorry if this sounds gross or disgusting but it is how I feel. I am so upset by this. I am supposed to wear boxers not pads all the time. I am supposed to be a male and because I am not in the right body, this shit happens and I am distressed about it. I was texting to a friend tonight and as I was, I was also writing to my therapist about hanging myself. that is me, I am splitting tonight. In one instant I am texting about marinara sauce and in my writing I am writing about the length of rope I should use.

I should be sleeping because I took some neurontin. But the stuff has not kicked in yet. I also just took my pain meds and some ativan but I am still fucking hyper and in pain. I bet the pain is going to go away first and then the ativan will kick in to put me to sleep. I just hope I don’t wake up at four in the morning again. that is what has caused all this bullshit. I am not sleeping at all through the night. I can’t remember a night where I slept past eight in the morning. It pisses me off. I think I should be up all night and then just sleep during the day. But then my mother thinks that I sleep too much. How can I sleep too much if I am not sleeping during “normal” sleeping hours??

I finished my Lincoln book that I was reading. I just have to read the Epilogue. but I really kind of don’t want to. I like the book because at the end it gives the same speech in the end as in the Lincoln movie. Maybe I should watch that tomorrow. I have not watched it in a while.

God this pain is unreal. It feels like someone is trying to shove a hot poker through my foot. I know it is nerve pain but I usually don’t get the hot poker feeling so I am not sure what that is about. I hope that my CRPS is not getting worse than what it is. I have been getting “hot flashes” in my foot the past several days now. My foot just feels really hot but when you touch it is cool. I don’t know what is going on. I am scared that the nerve damage is spreading or that I somehow twisted my good part of my ankle and now it is sore. I won’t know for a few weeks because that is when I see my PCP. By then, the pain could be gone and I would look like a fool. Either that or the pain will change to something else. I have had so much different types of pain in my foot I think my doc thinks I am making it up just so that I can get pain meds. I swear I am not. It’s just that the worse part of the pain happens at night and not during the day. Though this type of pain, the hot poker, seems to be happening more during the day and then gets worse at night.

Because of this I am constantly thinking of ways to end my life. The problem is that I don’t want my nieces to find my body. And so I can’t kill myself at home. I wish I could just chop my foot off right now. It is so killing me. I know I am not alone with my thinking of killing myself because I am depressed and in pain. That some how comforts me but at the same time it doesn’t. I know that I can’t beat this diagnosis. the pain changes too much for anyone to really believe me. how can they when one day I say that it is a hot poker and another time I say that it is like a barbed wire going though my ankle? or that my foot explodes in pain and I can’t move my last three toes. This doesn’t happen during the day. it only happens at night so when my doc examines me, I am not hurting. I don’t get the exploding pain, the hot poker, the barbed wire. It is SOOOOOO frustrating!!!! I don’t know if my doc believes me. I know my psychiatrist does and my physiatrist does. but I don’t know if my PCP does.

This is what I think about at night, when I can’t sleep. This is why my blog is called the midnight demons because that is truly when the demons come out, either mentally or physically. it truly sucks!