Category: cauda equina syndrome

You know you’re having a bad day when

by Midnight Demon, posted in cauda equina syndrome, CES, chronic physical pain, depression, mood disorders, physical pain, suicide

You know you’re having a bad day when…

You know you’re having a bad day when you wake up and a half hour later you are in severe pain. I just can’t believe my foot acted up. But then, this has been happening for the last few weeks. I can’t stand it anymore. I lose sleep because I am in pain and then when I do wake up, I am in pain again? It’s not fair! Usually my day time hours I am in manageable pain. It has gotten to the point where I don’t even notice it anymore. Now all that has changed. I don’t know if something else is going on with my foot, if I did something to cause it to be this way or if it is just nerve damage. I don’t really care of the cause, I just want pain relief. Luckily taking pain meds in the morning are working but it leaves me exhausted the rest of the day, even with a cup of coffee. Though my Starbucks funds are running low, I won’t be going there soon until my next pay period. I guess I over indulged when I bought myself some treats. Can’t help it. I love their coffee cakes.

Yesterday I was reading my support group email and a friend was telling the group how you need to mourn the loss of your old self as you are never getting back to it. Then a fellow blogger wrote the same sentiments about her illness and how disabled she felt but didn’t realize how much of herself had gone by the way side since becoming ill. She was crying as a way to mourn that loss. It got me thinking…maybe I am so suicidal because my grief is just too great. I got CES, Cauda Equina Syndrome, at the age of 25. It is a syndrome of nerve damage caused by compression of the cauda equina nerves, the horses tail, that is at the end of the spinal cord. These nerve control the function of everything below the waist, from leg movement, to going pee and having a bowel movement, to sexual function. It also controls sensation and proprioception, the awareness of where your legs and feet are. Once this is gone, your balance is affected. You might lose control of one or both your legs. You might not walk correctly anymore.

I have been through a lot the past year and a half. I have been diagnosed with a nerve condition called complex regional pain syndrome (CRPS), which is the chief source of my foot/ankle/leg pain. It is caused by already damaged nerves and aren’t I the lucky one to get both conditions. Since I have been diagnosed, I have been really depressed. I know there is no treatment other than opioid therapy. Though I have been in therapy with the same therapist for the last twelve and a half years, I still have not thought how much these conditions have affected my life until now. I no longer can work. At one time I was working three jobs. Now I can barely do one. Before going on disability, I was working two jobs. I wasn’t happy. Both jobs were stressful and caused me sometimes sleepless nights. But then I sprained my ankle and everything started to go down hill after that. I couldn’t figure out why the ankle, which should have healed in the allotted time, was still causing me pain. Why my leg still had swelling, why my foot and ankle were swollen. It didn’t make any sense. I saw one doctor after another. Podiatrist, orthopedists, physiatrists, neurologists. None could give me a clue until the symptoms became worse and a picture of CRPS started to emerge. By that time, I was having difficulty working both jobs. I ended up going to the emergency room in severe pain, pain that was causing me to think of suicide as a solution to end it because nobody could help me. I went to physical therapy and they were the ones to notice I wasn’t walking correctly. My foot does this swing thing that pulls at muscles it’s not supposed to while I walk, but only does so when I become fatigued. Which, one physical therapist showed, happens very quickly. And that is because I never regained my strength in my foot after getting CES. I never thought that at the age of 36 I would be disabled. And it hurts. Not having the social support of my coworkers anymore hurts. Not having contact with people outside of my family hurts. My friends that I thought would always be there are there no longer. They all went on with their busy lives and stopped texting and calling to see how I was doing. I don’t blame them. But I do miss them.

I guess when I have had uncontrollable sobbing episodes it was because of my grief that I have been avoiding all this time. I don’t know how to deal with it. I never thought that I would be in mourning. I never thought that I would lose my job because I couldn’t walk anymore. I still am able to walk just not for long distances. I can’t stand for more than twenty minutes without pain. I used to be able to do so much and now I can’t do anything. And because I am not financially stable. I can’t even go back to school while I ponder what my next move is. College is too expensive for me to afford. Even at the state school. I know I should put some time into getting a grant or something but I wonder if I am too “old” to get it. I have had to put my college education on hold because of my mental illness back in 2008 and I have not returned to school since then. But then I am not sure I can walk around campus and do the stairs like I used to. There is a lot of loss in my life on a very personal level. How do you mourn the loss of your functions? How do you get used to not doing something as “simple” as walking. I have had to relearn to walk again twice in my life. How many people can say that?

It makes me angry at times. I guess that is why I have been having fits of anger for no reason. I will just be in my room playing on my laptop or writing when all of a sudden these waves of anger will wash over me. I guess it is all part of the grieving process. And isn’t one of them denial?

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.