Category: medical

sense of sensing–proprioception

by Midnight Demon, posted in cauda equina syndrome, CES, medical

Proprioception

Proprioception (  /ˌproʊpri.ɵˈsɛpʃən/ pro-pree-o–sep-shən), from Latin proprius, meaning “one’s own”, “individual” and perception, is the sense of the relative position of neighbouring parts of the body and strength of effort being employed in movement.[1] It is distinguished from exteroception, by which one perceives the outside world, and interoception, by which one perceives pain, hunger, etc., and the movement of internal organs. (wkipedia 9-27-12)

We take this for granted until you get hit with Cauda Equina Syndrome.  Cauda equina syndrome is a particularly serious type of nerve root problem that can be caused by a prolapsed disc. This is a rare disorder where the nerves at the very bottom of the spinal cord are pressed on. This syndrome can cause low back pain plus: problems with bowel and bladder function (usually unable to pass urine), numbness in the saddle area (around the anus), and weakness in one or both legs. This syndrome needs urgent treatment to preserve the nerves to the bladder and bowel from becoming permanently damaged. I took a bad fall a few months ago and could not figure out for the life of me why I fell. I was trying to enter a cab and missed it by a foot. I just suddenly dropped with no awareness as to what the hell happened. I almost took another header the other day and realized I was tired and my proprioception was off. Usually I know where my feet are. When I lost this function back in 2001, I always made a mental note of all times of where my feet were so I wouldn’t trip over them. This vanishes when you become fatigued, mentally and physically. Then your feet can cause you trouble. I realized this painfully when I fell and nearly broke my arm and sprained my good ankle, again, when I fell a few months ago. I am sure that most people are saying what the hell is it I am talking about and it is complicated to explain. How can I not know where my feet are? It is because the nerves that tell me where they are has been damaged so I no longer have the sense of where they are. A couple of years ago, while exiting work in the garage, my car would stop and I had no idea what was wrong as I was hitting the “gas”. I looked down and found that my foot was really on the brake. Thank goodness or I would have been speeding around in the garage and god knows what kind of trouble I would have gone into. The few times this has happened was again due to fatigue and less awareness, a type of mindfulness, if I dare use the word, that has dissipated as I become tired.

To lose this ability is frightening. Not knowing where your feet are is a dangerous thing. I thought that after 10+ years I had developed the sense back but my fall can tell you I have compensated for it pretty well, that is until I become fatigued. Lately I have been more fatigued but thankfully I have not had any falls or trips. Sometimes if my leg is really tired, it will drag. I just cannot bring it up to where it should be while I walk. The AFO (ankle foot orthotic) has made things easier for me to get around but it still doesn’t help with the swelling and pain that I experience every day. Today I went to my monthly pain management appt with my primary doc. I asked him what I can do about the swelling other than elevating and icing like I have been doing. He says to wear a light compression stocking to see if that helps. Problem is that they are like $40 a pair and when you have a limited budget, it is difficult to spare that kind of cash. He also just advised to keep doing what I have been doing but to try and lose weight. I was like are you fucking kidding me? I can barely walk most days and you want me to keep moving? I love to walk but I get so damn tired that it is hard to do and with my ankle swelling up on me, I don’t think I can walk more than a few blocks without pain. I have tried. I hurt and then trying to get the pain under control just about kills me afterwards. It takes me at least twenty-four hours to recover and I hate spending time in bed doing nothing but keeping my foot elevated. I am glad I bought this trapezoid sized foam elevator thingy to raise my legs to where they should be. I can get very comfortable in bed now except I cannot sleep on my back. I am a side sleeper so the elevator ends up kicked to the floor or the foot of my bed most nights.

So I had planned on going on a diet anyways. A slimfast diet. Except I can’t keep my appetite controlled. I want to eat food not liquid. So I have tried eating smaller portions. Fail. Tomorrow a friend is taking me out for dinner to a restaurant. Now I need to watch the fatty foods and salt that goes into it. I really just want to lose the weight without having to think about it but that is wishful thinking. I have always been heavy. Started in gaining weight in 3rd grade and then when I got on psych meds, I just ballooned out because the side effects of the meds make you hungry. I find that the nerve pain med I take, neurontin, will triple fold my appetite. The hungry horrors come out the next day and all I do is eat. So I limit my nerve pain med to when the pain is so bad I cannot sleep, which is usually when I take it. So far my nerve pain has not been so bad. But then I have not been standing too long on my feet for some time now. Usually if I have a day of standing too long my feet will burn and have shock pains.

a little of this, a little of that

by Midnight Demon, posted in depression, medical, mental illness, suicide, suicide attempt

To write or not to write, that is the question. Been trying the past few days to write something, anything and I came up with nothing. I had jotted down one of my statuses as a starter to write but it too has not gone anywhere. Right now as I am writing this I am becoming exhausted. I was hoping my therapist would call me tonight but it doesn’t look promising.

Been thinking the past few days about needs. Everyone has some need that is not being fulfilled at any given time. Shneidman, the father of suicidology thought there were 20 needs that lead to suicide. I talk about him a lot in my writing so people know this sweet man that called me out of the blue one day. I was actually shaken up by his phone call. To me, he was as famous as Richard Gere. I was so honored that I didn’t know what to say to him when I called. Time was of the essence because his health was frail and if he died before I called him, I would never had the courage to talk with him for a half hour that truly was the highlight of my life. Now if Dr. Jobes ever calls me, I will have a heart attack. He is another person I deeply respect because he writes about suicide and what it is like and not only this but developed an assessment that can be used to help save someone’s life. I will write about his works until my dying day because he has the knowhow of what it is to be suicidal. I am not saying that he is or ever has been suicidal, but he has lead the way in the collaboration of so many professionals for one goal, to end suicide. Granted not all suicidal people can be saved, but he is willing to try, which is more than what I can say for some of the top professionals in Boston. I had my doubts ever since I tried getting a new therapist and failed, ten times!! No one would take me on and then the one, the last one that did was afraid of me. I couldn’t be in that therapy if someone is afraid of me because I am high risk. Sure, statistically I should be dead. But by the grace of some higher power, I am not.

That brings me back to the needs. I have been thinking about what my needs are that are not being met that drive me suicidal. I know that I am not loved, I have a need to feel important because I think I am nothing, I have a drive to succeed but yet I know I will fail. That truly is my biggest thing. I failed at killing myself and feel terrible at that loss. It is a loss that I have yet to get over. I still truly believe that I am meant to die by my own hand though there still is a drive to keep me going. I was asked recently on what it is that keeps me here. To tell the truth I have no idea. Some part of it is faith and hope, others is a pesky therapist that will “die” if I die. The aftermath of a suicide is not pretty. I sometimes wish I could be a part of Jobes world for a little bit and see what he sees in a hopeless case like me. What he would say or do to try and ease my suffering and then I look at my therapist who is doing all she can to keep me sane and alive. There is nothing more that she can do that what she is doing. Suicidal thinking has become a part of me that I can’t let go. I read about it every day to try and ease my pain, I work with my therapist who is a pain in the ass sometimes and she is open to my ideas of what treatment is and does not have the “I know it all you know nothing” attitude. If she did, I doubt that I would have stayed with her for this long.

The twenty needs are abatement, achievement, affiliation, aggression, autonomy, counteraction, defendence, deference, dominance, exhibition, harm avoidance, inviolacy, nurturance, order, play, rejection, sentience, shame avoidance, succorance, and understanding. If I was to fill out the model of the needs, my highest would be affiliation, achievement, succorance, nurturance, and understanding. As I have written in a previous paper (https://midnightdemons7.wordpress.com/2012/09/03/is-suicide-caused-by-psychological-pain/),  the twenty needs are weighted on the sum of 100, though Dr. Shneidman does not say what the scale is for each of the 20, and as much as I have tried to ascertain this information through his research, I have not been able to find it. Everyone has these needs in some way shape or form. And when they become blocked or frustrated, suicidal thinking occurs. I know my need for affiliation is great at times that sometimes I get frustrated. I don’t necessarily become suicidal all the time because I have not been friends with someone but I’ll admit that it is lonely when you don’t have too many friends that call you anymore or that just keep in touch via email. I am a loner by nature but that doesn’t mean that I am friendless.  My online contacts mean more to me than my non-online friends. My family does not know too much about what I write, if they read my blogs at all. But this is my livelihood, writing about suicide because it means so much to me. It is the biggest demon I have had to face in my life and sometimes it gets the better part of me.

This past April I went to the annual conference of the American Association of Suicidology and found out some things I already knew. I met my favorite suicidologist and his trainees again. One of his trainees has become a good friend of mine. I also found out that I am a hopeless case that no one in their right mind would want. I am high risk, psychotic and delusional at times, and have multiple suicide attempts. I asked one of the guys from Mayo about this “case” I was working on and he wouldn’t touch it with a ten foot pole. Thanks dude, you really shown me how much hope I have for my future. It was an exhausting trip. Next one is in Texas and I am not sure if I am going to go. I have never been that far out west. I really don’t know anyone close by. I would have to stay at a hotel for the few days. But it might be fun to meet up with my co-author and discuss my book that she wants me to write. She is the biggest proponent in my writing right now. She had me publish my blog and it has done well so far. Since I started it in July, I have had almost a thousand views. I hope that I am able to meet up with her in Texas but I don’t think I will have the financial resources to pull it off.

I got notification this week that I am found to be disabled. My social security disability has gone through. I now can collect a check every month while I write and not have to worry about how I am going to pay for my Starbucks coffee habit. Starbucks is truly what keeps  me going some days. It is a chance for me to go out of the house, even if it exhausts me. To have that one cup of joy a day is usually all I can get out of my day. Instead of my mocha, lately I have been enjoying the Blue Java of Indonesia. It has a full bodied flavor that I like. I have tried the Panama but wasn’t too thrilled with it. It was a little too earthly flavored. I am going to try the blue mountain as it seems like I will like it. But none of this would be possible if I was not deemed disabled due to my mental illness. Since I found out I have been more depressed. I find it more exhausting to do tasks. Even my writing as dwindled to what it was. I try journaling to keep the ideas going and sometimes I will write something I think worthy of a blog but mostly I keep my personal thoughts personal. There was a time when I used to share my journal with my therapist as a sort of therapeutic processing, but seeing as I don’t see her physically anymore, I might end up sending her an email about my thoughts on certain things. Like my suicide attempt paper I wrote that was extremely difficult for me to write. It stirred up a lot of emotions, some of which I had no idea I was still carrying around.

The reasons I am still around are many but sometimes that is not so obvious in a crisis. It truly is up to the individual to make the choice and no one can take it away. But if they let a professional know they are hurting and thinking of taking their life, they might be able to get the help they need. I just hope that with that help the person finds someone who is understanding and asks, “where do you hurt”?  Because otherwise it is going to be a long road for that person to find the help they need. Not all professionals are alike. They have different disciplines and treatment plans. But if they are able to find a therapist who is willing to take them as they are, that therapist is worth their weight in gold.

A Positive Blog

by Midnight Demon, posted in cauda equina syndrome, CES, depression, medical, mental disorders, mental illness, mood disorders, suicide, suicide attempt

I don’t know what to call these blogs that are just my random thoughts and think ramblings is better than just “random thoughts”. I tend to go off topic, if there is one or when I don’t think there is one so ramblings is more on target than another random.  But if it was just random, I would just call it random, wouldn’t I? But as the title suggests, I am rambling now as I am writing this…

today I get an email from a friend asking me to be part of an editorial board in the organization I am a member of. I am STOKED. This is my first attempt at this blog being a positive note as today was an extremely siked day. Not only did this person ask me to write for this column, soon to be named, but being part of the editorial board on suicide attempters is important to me on so many levels. I struggle on a daily basis with my suicidality, I would have what Maris would call a “suicide career” so to do some thing positive with my negative energy is HUGE. I just hope I don’t let people down with this opportunity. I have never edited any one’s work, just my own but I think I have the knack for grammar and the like. I am not an English major, never was as it is kind of boring, but I have picked up a few things with a creative writing course I took in college. I don’t remember if I finished it or had to withdraw. My college transcripts tend to be filled with more W’s than grades because depression would hit mid-semester and I had to choice which class of the 2 I could pass with a fairly decent grade. I was working full time and going to school part time and it was a struggle for me with my illness. It really killed me when I had to pull the plug in 2008 because my psychosis got so bad and the meds weren’t working plus going into the hospital because I was so delusional was not fun. The meds always made it hard to think so I ended up having to take an incomplete which is now an F because I never went back to school. Some genius I turned out to be.

the second positive thing today was that my psychiatrist asked me to be part of her 1st yr med student course. She has asked me to sit with a group of 1st year medical students and have them ask me questions about my medical condition. I find it fun. The first year I did this I told them about the chronic pain I was having and I think I made an impact on them with my honesty about chronic pain and depression that follows. These are going to be the doctors of tomorrow so it is cool to be a part of this learning process.

Then the nerve condition I had made my day suck! I had a little incontinence of the bowels that made all these positives go away in a heart beat. I just wanted to die with the indignity of it all. How could so many things go right and then this happen? Because I cannot feel myself go to the bathroom because of nerve damage to my cauda equina nerves, that is why. I have what is known as Cauda Equina Syndrome (CES), post. It really sucks because all the nerves that control bowel function and bladder function are affected. It sucked today because for some reason I had the runs and that is always *fun*.  I am literally afraid to fart for fear of Sharting myself. SO now all I can think about is ways of killing myself but then I re-read the emails from my doc and my friend and it kind of helped because if I do kill myself, I can’t be part of the learning process. I can’t be a part of the editorial board for this organization that means so much to me. And I would have let my friends down with my death and I am sure as hell sure that my friend in SA would be lost without me and take his life because I am not around to stop him. I really love you my friend and I can’t bear the thought of you ending your life because I ended mine. So maybe today is a new day where I have suicidal feelings but thinking of the positive helps me to see the light at the end of the tunnel despite desperately wanting to throw in the towel.

Grief

by Midnight Demon, posted in depression, medical, suicide

Been struggling the past few days. I have been thinking of my friend in South Africa who is struggling right now with grief from the loss of his best friend and soul mate. His blog details the pain he is going through and it made me think of my own grief I have with the life I used to have. Of being able to walk without pain, life without taking any meds other than for psych, and being able to work without worry. Now I have no job, walking is no longer possible for long distances and yet I still think I can do it if only if I try harder. I tried for more than a year working two jobs that were physically and mentally exhausting. I went from working 60 hrs a week to nothing in 16 months. Now I don’t know if I can ever work again because soon as I get stressed or the pain levels get too high, I have a psychotic break and develop delusions that I believe are real. Like cutting my leg, I know it will not cure anything yet I can’t help but feel there is a foreign body in it causing the swelling and if only that swelling was cut open, I will be healed. But no doctor believes me. They just tell me to take my little pink pill to quiet the voices down and suddenly the delusions become just that and I realize just how fricken crazy I am. I know one day I will give in to the internal hell I face every day and try and open my leg up to see what is inside this lump on my leg. It is the cause of my grief, of my suffering this raised bump that some days you can’t see and others you can.  My friend has a different kind of grief but I know he suffers the same way I do with this bloody nerve condition we share. It has robbed us of our sanity, our livelihood, and our dignity. It bothers us more than we let on to people because we have to put a brave front on all the time and minimize just how bad the pain really is.

The other night I was contemplating ending my life in a few days time. I know I can really do it. I have the equipment and all that is needed is just a time and place. I know that I can really do it but do I want to leave my friends and family, who I know will be better off without me than with me living? I am tired of struggling every day, of breathing in and out and knowing nothing will change. My contentment period has expired and I want to expire too. I don’t understand why I should go on living when all I do is suffer. People have told me I am a good writer but so far it has not paid the bills and let me live a life that I can call my own. I just have trouble with the fact that I am so miserable. I am a negative person. I cannot be a positive when I do not see the light of day. Yet I just continue to stick around because my friend in SA needs me, my nieces and nephew need me, my therapist needs me.  I feel like such a hypocrite when I am trying to prevent suicides when the only one I am truly trying to prevent is my own. I read about suicide day and night and realize that I don’t know how I survived all the attempts I made over the years.  Reading about suicide makes me realize that statistically I should be dead. Yet I am not. Grief has frozen my heart to love again, and this nerve condition takes every ounce of strength not to throw in the towel after each day. I would love to work again and walk around the block without hurting. But that is no longer possible. I walk with an AFO (Ankle Foot Orthotic) and it is my help aid and my hindrance. People see that I am disabled. It has taken me a year to come to this conclusion and it sucks. Realizing you are disabled is no happy feat. It makes you wonder when you ever will be normal again and after 11 yrs of dealing with the pain and agony of nerve pain, I called UNCLE. I had enough. My friend, bless him, still keeps the fight to support his family and his friend’s son. He gets around in a wheelchair. He has more pain than I ever would dream of but the difference is that his is controlled better than mine. The US frowns upon narcotic use and so I am limited in my pain relief. I only take it when I have pain that is an 8 or higher and days when it is on the cusp of being an 8, I try to stick it out. I don’t do this because I like to be in pain. I do this because the stigma around pain medication makes me. My family doesn’t understand the difference between addiction and dependence. Actually few people do unless properly educated or if they also suffer from chronic pain. I can tell you I don’t misuse my meds. I don’t take it to feel high or to change the way I feel psychologically. I don’t take more than what I am supposed to unless I am close to being in a suicidal rage because my pain is up there and I can’t take it any longer. This means I am not addicted to it. I can go a few days without taking it, but barely longer than that. I can’t say I am dependent on it because on days I don’t take it I don’t notice being sick or worse than what I normally feel. I am chronically exhausted by pain and mental anguish that I hardly notice if I am dependent on the drug. My mind doesn’t think, oh I have not taken any pain meds today so why don’t I take it for the hell of it. I just don’t think that way. Some people do and that is a tragedy. And those are the people I am mad at because they ruin me getting the help I need from pain management doctors. If these doctors truly were able to help me with this and take care of my pain, I probably would NOT have had to file restrictions at work and then be out of work because those restrictions were not accepted by my employment.  That is why I am out of work, because I can’t walk around the lab anymore. It is like a huge city block and walking around and around for eight hours just about killed me. Hell after four hours I was ready to collapse in pain and sometimes I did. I’d have to leave in the middle of my shift because the pain got so bad or I had to rely on my coworkers to bring me work because I couldn’t get up off the chair and get it myself.  It was at times humiliating to be in that kind of pain and not have anything to take for it and then go home and suffer all night long. The hours I lost losing sleep were many.  I would get some relief after a few hours sleep but then it would be time for me to go to work my next shift. I sometimes would call out if I felt I didn’t get enough sleep. You can’t be dealing with a person’s lab values and have no sleep that could cost them their life because I am too sleepy to pay attention. What is worse I could not take any pain meds while working so I had to suffer through my shift without any relief. It sucked big time but I had to be alert in my duties. I had to stay sharp.  As much as I sometimes hated my job, I do miss it. I miss some of the people I have developed close relationships with over the years I worked there. I miss the routine of work. This is my grief and it hurts like hell