Tag: CES

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.

nobody knows

by Midnight Demon, posted in Chronic pain, mood disorders, suicide, writing

Nobody knows…

Nobody knows how bad I hurt

Nobody knows how late I stay up

Nobody knows the pain that I feel

Nobody knows the hours I sleep and don’t sleep. They think that because it is night time, I sleep but I don’t. I usually have the best sleep between 6 am and 10 am. That is all I need. A four hour nap. Because it is the only thing that makes me feel good for a few hours. It is the only thing that takes my pain away when I am in the deepness of the unconsciousness.

Nobody knows the struggle in my chest.

Nobody knows the pain that I feel

nobody knows how bad I want the struggle to end

nobody knows how bad I just want to end my life

I don’t get nerve pain

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

I don’t get nerve pain

Truly I don’t. My room got freezing cold because I had the a/c cranked because it’s hot outside. My foot gets freezing ice cold, even under the blankets and a pillow so I put a sock on it. Now it is warmed up and hurts like holy hell. I am so sick of this shit. I know I put off my suicidal plan but it is back on again. I am not going to live with this shit. No fucking way. I didn’t do anything to my foot though it feels like someone is stomping on it. I have it up on a pillow and it still hurts. I just don’t get nerve pain. I was doing good all day. I thought today might be a day that I won’t have to take my pain medication but NOOOOOOO. My foot had other plans.

But such is my life with CRPS (complex regional pain syndrome). Thing is other than my foot getting really cold and then really hot, I don’t have any other symptoms other than pain. My foot doesn’t change color. It doesn’t swell up like it used to. I just have this exploding pain that comes for no reason. While I am at REST, when I want to go to SLEEP. And the pain isn’t the same. Sometimes it is exploding. Sometimes it is like it is in a vise. Other times it feels like some one is taking a hammer to each individual bone and trying to crush it. It is agonizing. Other times, if it’s not the bones in my foot, it is my ankle bone, the lateral malleolus. This is right where my peroneous tendons are. I have chronic tendonitis of these tendons. And they hurt big time. And when this pain starts it is like someone is driving an ice pick right through my ankle bone. It starts off the same way as my bones in my foot. They get really cold even though to the touch they are warm. Then it gets warm and it hurts like fucking hell. All I know is that I can’t sleep when I am in pain despite taking the meds because then my anxiety creeps in and it’s all over.

See, when my Cauda Equina Syndrome (CES) started, way back when, it started in my left leg/ankle. So now I have a bad association with pain in my ankle flaring up and me thinking I am going to get CES again, which is worse than the pain in my foot! I could lose total function of my bowels and bladder, my back could go out, I could lose motor function of my legs and end up in a wheel chair. It’s not pretty. But it is what I fear because I have a disc in my back that can make this happen at any time. I have been living with this fear for the past few years and it especially troubles me that the disc touches the nerve roots that control all these things but the docs won’t do any type of surgery because there is no compression. So I live in fear instead. My anxiety goes up and it takes an Ativan to get me to calm the hell down and music to put me to sleep (sometimes). I usually have my anxiety in check but when I am in serious pain, like now, it takes forever to calm down from it. I have to constantly move my toes or realize they are there and not numb to make me feel better. But sometimes during these flare ups, I can’t move my toes and that just sends the anxiety up to panic mode. But as long as I can move my hip, leg and ankle, I know that I am ok. But living with this anxiety is no fun. It drains you like no tomorrow.

Meds are kicking in so I will stop here for now. For those that read this, know that you are not alone with your symptoms.