Category: CES

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.

interview meeting with 1st yrs

by Midnight Demon, posted in CES, depression, psychache, suicide, transgender

Started reading a book about sibling suicide survivor. I was apprehensive about reading it because I have siblings that would probably go through the same things if I should die and I didn’t want to know what they would go through. My pain is bad enough but knowing I would cause my sisters pain would be impossible for me to take. I guess that is one of the many reasons I am still here.

I had an interview meeting with some med students today and I don’t know why but I told them I was transgendered and told them what it was like being. The doctor was good about it and I had Dr. P behind me in case I got into trouble. Right now I am feeling like the biggest asshole on the planet because I shared my biggest fear and the main reason why I feel suicidal. I sent a text to my therapist because I just feel so awful and I don’t know what to do about it. She hasn’t called me back yet so I decided to blog.

A lot of feelings came up but it also felt like a relief because I rarely discuss this outside the confines of my relationship with dr. p and bozo. I started to get a little lightheaded and dizzy at the release of my personal feelings about this. I don’t know how it happened but I think I am getting more and more comfortable talking about being transgendered and what it is like to be this way. I hope that the students will benefit from this. I tried to emphasize the alliance between doctors that helps so much in the heath care process because without it, you are not really going to have a good relationship or report with your patients.

I’m still trying to process what happened and how I feel about it but I am soooo fatigued. I just can’t think about today without it exhausting me. I don’t know if what I said was a good thing or a bad thing. I was trying to be honest about what my experiences were and how I got CES x 2 and everything but somehow the transgendered thing took over the conversation. I know it is because it is such a hot topic. More transgendered tend to be more suicidal and probably end up killing themselves more than we think.  I know those that get help become free but I also wonder if it still a constant struggle to be accepted as the gender we say we are once we make the transition. My therapist used the assimilation word on me last week and I am wondering if that is ever going to be possible for me or will I die before that happens. I’d like to think that I can lead this life without going through the “change” but I want facial hair and a mastectomy so bad. I loathe myself for having a chest. It is not what I want. I remember when they were forming I was pissed because it was not who I thought I was. It still is a painful reminder of what I am not.

So “Michael” entered the room to give his little speech about what it was like to be transgender. I didn’t want to use my real name because I hate it so much. I think with Michael I can really relate because I always thought of myself as a “Mike”, more so than Alex. Hell for this blog I am Michael Crusher and I don’t think that is going to change. I think Michael will be making more appearances on the blog, as it is easier sometimes to write under his name than my own.

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.