CES (Cauda Equina Syndrome) is a literal pain in the ass. Just when you think you have things going fine, it will flare up on you to remind you of all that you have been through, to remind you that you still have nerve damaged parts of self, whether it be your bottom and genitals or you lower extremities. Just now I got into bed after using the bathroom. I don’t know what I did but I know I didn’t just stub my toe through it feels like I just did. I forgot to use my slippers on my feet because unlike pre-CES I still like to walk barefoot. But there is ceramic tile that is COLD and can cause spasms in my bad foot if exposed to this temp, like it did tonight. So my foot is reminding me that I can no longer walk barefoot around my house and that I somehow stubbed my toe today without realizing it. Wonderful.
I had my sister’s car today and while driving to pick up my dad, I was pretty tired. I didn’t sleep too well last night and woke up early this morning to do some errands. The errands exhausted me and I should have taken a nap but I knew if I did, I probably wouldn’t sleep well tonight. So I am driving my sister’s car and wondering why I am slowing down. I have my foot on the gas, or so I thought. So I push a little harder on the pedal and come to a complete stop. I didn’t know where my foot was. I mentally took a break from the proprioception because I was tired and because of that my foot was on the wrong pedal. From that point on I knew it was going to be a long night. I keep having to remind myself where my right foot was at all times and this gets to be mentally tiring. I am sure those who are reading this have no clue what I am talking about. But think right now, do you know where your feet are? Can you close your eyes and move your feet up and down and then know when your foot is up and when it is down? I no longer have that sense. It was gone. Sure I compensate for it now but when I am tired, all bets are off. It’s like driving on automatic pilot when you go somewhere. You want to get to point A but your mind is thinking point B and when you get half way to B, you realize you really wanted to go to point A and have to turn around. Mentally, I have to be aware of my feet at all times or I will trip or in this case, I will just come to a complete stop in the middle of the road and wonder what is wrong with the car…
I question driving. I don’t like to drive at night because I am more fatigued and my proprioception (sense of sensing) can be off more. This doesn’t happen all the time and luckily I don’t drive that often anymore since my car hit its last pothole.

sense of sensing–proprioception


Proprioception (  /ˌprpri.ɵˈsɛpʃən/ pro-pree-osep-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.