Tag: cauda equina syndrome

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

bitchy blog

by Midnight Demon, posted in suicide attempt

peroneous tendon

I feel wicked agitated and angry right now and I don’t know why. Nothing has specifically set me off other than the Sox losing but I don’t have control over that. I just want to start a fight with someone and I tried that with a friend and it didn’t work. She wanted to just hear my voice and I refused to call her or have her call me. I can’t stand it when she gets into one of those moods. Because whatever I say goes in one ear and out the other. I don’t get listened to.

I know I am partly enraged because I am in pain and I don’t have an outlet for it. Plus I still have my stupid fucking menses and the feminine product is irritating me. There is nothing I can do about that but I can’t not wear underwear while bleeding. My sheets will get messed up and so will possibly my mattress. UGH I am so aggravated!!! If I could cut I would. All I could do is just ride out the storm and this storm is big. I can’t even find the right music to calm me down so I am just listening to my mix of country tracks. I finally got Brantley Gilber’s More than miles song. I have been playing it non stop on Youtube the past few days. I love this song. Right now Luke Bryan is playing. I love him too. Not in any way of a sexual sense just voice wise.

I also feel frustrated because no one got back to me on my papers that I sent out today. I know that I shouldn’t expect a quick response for a three page paper but an acknowledgement would have been nice. I sometimes think I send out emails and it just lands in cyber no where land when I don’t get a response. I should probably take an Ativan to calm the hell down but that is going to do nothing for my pain. Pain has moved up to my leg because like a fucking dummy I had to stand on my leg while my foot was asleep. My peroneous tendon didn’t like that one but so the WHOLE fucking tendon is inflamed. I guess I won’t be getting my hair cut tomorrow like I wanted to. I know I won’t be able to walk the distance. Not after a painful night like tonight. I am so fucking angry. Angry that I can’t do anything about my pain, Angry that I can’t stand for more than a few minutes at a time. That I just can’t do what I used to do. And the surprising thing is that I am fucking hungry but I know I can’t make it down the stairs to get something to eat. All I had to eat today was a coffee and a cold cut sandwich. NOTHING else. I just wasn’t hungry today. But now I am and there isn’t anything I can do about it. I have to sleep with one ear open tonight because my mother had a hypoglycemic episode and she tried to keep it from me. I could tell because she was slurring her speech as she was telling me why she was eating cereal. WTF. I hope I don’t have to call an ambulance. I really don’t need to be going up and down the damn stairs to let emergency personnel into my house. But if I have to, I have to. I should go check on her but my leg is still tender. So much for the fucking pain meds working tonight. I should take two and see if that helps. I just been taking one hoping that would be enough. WRONG.

I know my friend is going to ask me about why I was in a nasty mood tonight and why she didn’t call me like she wanted to. I fucking hate when people don’t get that I just don’t want to talk. I gave her a choice. Either don’t call or just text me. That was the only way I was communicating. Take it or leave it so she left it, and I hope she leaves it at that.

I just checked on my mother and she is sprawled out on her bed. Doesn’t appear to be in distress so maybe I can sleep tonight. But I doubt it because I just acted up my leg again. God forbid I should walk. All because of a stupid disc material. I know it is because I have scar tissue on my nerve root. That is the fun part of having Cauda Equina Syndrome, the emergency ends but the pain doesn’t. You still have to live with the repercussions of the after effects of surgery. So frustrating to live like this.

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.

Pain is NOT my Friend

by Midnight Demon, posted in cauda equina syndrome, chronic physical pain

Pain is not my friend

Most people have pain for a good reason. They break a bone, there is an infection, they stubbed a toe. But my pain is not because of that. It is because my nerves were damaged by a disc fragment that I am hurting and even though the disc is no longer pressing on my nerves, I still have the pain.

Tonight this pain is keeping me up. I think it has to do with the temperature change and thunderstorms that have moved into my area. I am like a human barometer. I am so tired that I am kind of falling asleep while typing this but the pain is preventing me from actually going to sleep. I have not had this type of pain in a few weeks. I almost forgot what pain was like. Now I remember and I don’t like it. I want it to go away again and let me live my life even if I was depressed and unhappy. Being in pain is horrible. It drains what ever energy you feel.

Even though I felt ok for a few weeks, I kind of missed the pain. Not in a masochistic sense. Just that after dealing with this for over two years, it felt weird NOT being in pain. Felt like something was missing and I just couldn’t figure out what that was. I had gotten so used to the pain being there all the time that without it, I was lost. Could I walk a little farther than I wanted to? Sure and I did. No pain afterwards. Today I walked a little farther and I think that is what caused the flare up. I don’t know if this pain is staying or going. I hope that it is going because I was really getting used to not being in pain again. Now I have to worry about things, like how long it will take for a shower. Just how many spoons it will take to do my daily routine. Even now I can’t find a comfortable spot to rest my foot without pain. And my foot/ankle is screaming at me. I am not doing anything to aggravate it. It is just resting on a pillow as I am typing this. I don’t have it elevated as I probably should because it will make typing a little difficult. But even then I don’t have relief. I wish the pain was telling me something but it is not. There is no bruising. No redness. Not even so much as a little swelling to indicate to me what I should do to relieve the pain other than to take pain medication as I have done. That is the MOST frustrating part of this whole complex regional pain syndrome. It is a difficult diagnosis to explain and I don’t even know the beginning to try to explain it. Other than my nerves have become so damaged it doesn’t know anything else except to hurt. And you can’t touch it with anything. Socks or even your hand will make the pain worse. I tried putting on a brace to steady it because it just felt like it needed it. It did help for a little while but then the pressure of the elastic was too much and I had to take it off. Soon as I did, the pain intensity increased. My ankle hates me and all I did that set it off was moving my big toe to stretch it out. Stupid I know. But really? Probably not. I am sure lots of people can move their big toe without pain or causing their entire foot to go haywire. But that is what I deal with. Every day. Every night. Pain is not my friend.