Category: cauda equina syndrome

pain and sleep ramble

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

Got things done today

Last night I started the process of changing the bedding and sheets on my bed. See, half of my bed I use as my “office”. It has books, journals, my laptop and a couple of other items. So clearing it off was the real problem to changing the linen. Once I did that, I got the comforter off the bed and washed it. I knew it would take a couple cycles to dry in the dryer. I already had a set of clean sheets. Trouble was that today after I took my shower, I didn’t want to do anything. I had a rough night sleeping and thought a shower would wake me up. It had the opposite affect. But once the comforter was drying, I knew I had to change the sheets. I forced myself to do it and it went quicker than I thought it would. Usually I only have one clean set of sheets because I always put the clean sheets somewhere and forget where I put them. But the last time I washed my sheets I put them in my bureau where it wouldn’t get lost and hopefully the clean smell would stay on it. Score for me.

This is hard because it always hurts my back when I do change the sheets. It would be easy if I didn’t keep my bed as an “office” but it is easier to work from my bed than from a desk. I know sleep docs would have a fit if they knew. But I won’t see them as I know my problem with sleeping comes from my mood disorder than any other cause. Last night, I slept a few hours and was up at 0230. I wrote a nice blog, something about demons and that is all that I remember of it. I was in a lot of pain when I wrote it and also was a little drugged up with my pain meds. But I had to write. It was the only way I would get back to sleep. Around 7ish, I was finally ready to call it a night. I wish my sleep schedule would be normal but when I am in pain, all bets are off. And I was in so much pain last night it woke me up. Then I started getting cramps in my neck that just wouldn’t allow me to go back to sleep. It was a really bad night. Probably the worse since being home from the hospital. And I was so angry at my treaters. Angry that they had kept me alive. Angry that I was in so much pain and couldn’t sleep. Angry that I couldn’t vent with someone because it was 3 in the morning. I was so WTF at everything.

I am to have a lunch date with my aunt this week. But I don’t think it is going to happen because I have my appointment with my PCP this week. It’s an appointment I am not looking forward to. My blood pressure is still borderline high to high at times. It seems to be worse in the evening. I don’t know why. I will mention that to him as well. He isn’t going to be happy with me because I gained a few pounds while in the hospital. I have been trying to work it off but it’s been so difficult as all I want to do lately is sleep because my nighttime sleep schedule is so fucked up. Maybe I will go for a walk tonight. It can’t hurt. Well, I suppose it can. I just never know what will jack my pain up. Sometimes it is over activities. Sometimes its doing NOTHING but resting. I just don’t get it. I know that if I go up and down the stairs more than a few times, I will hurt. My ankle just doesn’t like the normal flexion it is supposed to have. But I really have no idea why I woke up in excruciating pain last night. I am so baffled. I know part of it is because I was sleeping on my left side (I usually sleep on my right). But I was in a deep sleep and for me to be woken up in severe pain, I just don’t get it. I wish I could talk to some doctor about it to help me figure it out. My PCP is useless when it comes to trying to figure out my pain. But then, he is not a pain specialist. And the pain specialists don’t have any answers for me either. So I am stuck with figuring it out on my own. I need to become a pain expert and study pain but the brain is so damn complicated. I am lucky if I remember the structures of the brain. I can’t even remember the amygdala from the gyrus. It has been too long since I looked at it and its pathways. My memory is not the same as it once was. I used to have photogenic memory. Now, I am lucky to remember things such as when I had lunch or breakfast.

Still hurting big time

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

Still hurting big time

I tried to take it easy today, I really did. I only went out to pick up my niece from school and I stayed in. I iced my ankle and leg while I read with my foot up on a chair. My niece was good, entertained herself with TV or the computer. I made her read for a little bit after watching a TV show. Only time I got mad was when she wasn’t careful taking out something from the fridge and dropped dip on the floor, then walked away from it like she did nothing wrong. She didn’t even bother to attempt to clean it up. That got me really mad but I didn’t yell at her. Just grabbed some paper towels and cleaned it. It hurt to do it because I am not supposed to be on my feet but I couldn’t let the house stink of sour cream and onion dip!

I went up to my apartment after my niece decided she wanted my mother to show her how to operate a sewing machine. It was a little one. Well, that was it for me climbing stairs. My leg gave out after I made myself something to eat for dinner. I shuffled to the kitchen to make myself a glass of ice tea and then retired to my room, where I have been the last couple of hours. I still am hurting despite the rest. I just don’t know what I am going to do. I have a friend from Australia in town and I really want to meet up with him but I am not sure I can. He is only in my neck of the woods for a few days. I left him a message that tomorrow night might work but I don’t have a car like I used to. He came here a few years ago and I am hoping to meet him at the same place as it is more convenient for me. But he hasn’t answered my message.

I had therapy today and it was determined that I am dissociating from my pain. Makes sense because I can feel it but not feel it. Like this morning. I woke up at 0600 kicking my leg and moaning but I didn’t know why. After I woke up a little more I realized I was hurting so I took some pain meds. It was the oddest sensation. My left leg was really hurting but I couldn’t figure out why until I woke up. I just remember it being odd that it was hurting and me shaking the leg like as if a bug was on me or something. Usually, if I move my position, the pain goes away. But I was laying on my left side. I was on my right so I was confused why it was hurting me so much. Then it dawned on me that I have nerve damage and that it was acting up. I hate waking up in pain. But my brain couldn’t process it so only gave me a little hint that it was hurting. My therapist says that I should take my pain meds even though I am not feeling the pain. It just feels so far away from me, like my leg is another person’s or something yet I am feeling their suffering. What is driving me nuts, is that the pain is there but it’s not. I feel it for a few minutes and then it tones down. I still feel it but unless I concentrate, I really can’t feel the intensity. My brain is zoning out on it. I can’t handle the pain I guess and that is why I am dissociating from it. Either that or my leg/ankle/foot are all numb and I really can’t feel it. But I can wiggle my toes, as painful as it is. Any movement in my foot causes me leg pain. It is half way down the side of my leg just in the middle of my calf muscle and goes down into my toes. I know the perneous tendon runs that way and it is all inflamed. I took some Aleve today to try and calm it down but it hasn’t done shit. I still am all swollen and hurting like a SOB. I have to take my meds every few hours to keep from hurting or I am in trouble. But I was able to sleep most of the night. I am grateful for that. Just sucked that I have been up mostly since 0600. I only got about 2 hours of sleep before I had to get my niece. I made breakfast and thought today was going to be ok but I guess the pain meds wore off and now I can’t stand to save my life. My foot keep going asleep on me and when I move it to “wake” it, my leg pain starts up. I really am miserable. It’s awful not being able to walk. I wish I could cut my ankle off. Then if it hurt, there would be a reason. But right now, there is NO fucking reason why I should be in pain. I didn’t do anything but normal stuff like walking up and down stairs. I didn’t stand too long anywhere. I just rested. But I guess I did one too many flights of stairs and now I am paying for it.

My therapist wanted to continue with the SSF and she tried to assess my mental status. Frankly, I don’t know what my mental status is right now other than being really pissed off because I can’t walk. It really is killing me that I can’t do a damn thing without setting my leg pain off. And the swelling is hurting me more than anything and I can’t get it down. I tried elevating it and icing it. NOTHING. I really flared it up and I don’t know what I did. I could kill myself but why and with what? I am trying to just be comfortable being a suicide attempt survivor who is now an author. I don’t think it would be good if I killed myself two months after my book is out.

my book

by Midnight Demon, posted in blogging, cauda equina syndrome

BookCoverImage

If anyone wants to read and review my book, please comment. Book is available where ever books are sold, including amazon.com

troubles

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

I am having a hard time tonight. It started with some panic attacks about my nerve condition. I had to talk to someone about it as I was getting really nervous but didn’t want to go to the ER. One of my friends from the support group gave me her number and we talk for a few hours. We exchanged stories and the like. It was good talking to her because she knew what I was talking about and that made me feel better.

I still haven’t had a chance to fall asleep. I am still in a lot of pain and it is keeping me up. I have my little sound machine on so that it calms my thoughts. I took two ativan and it still hasn’t knocked me out yet. I feel calmer, just not sleepy.

What set me off tonight was my bladder not functioning the way that it should. All day, I have had some hesitancy that has me worried. It could be because of my pain medication or my bladder getting worse, but as I have had back pain over the last few days, I am hoping it is not disc related. I see my PCP next Tuesday and that is a long time to wait to see him when you are anxious. I hope the symptoms resolve by the time I see him. I know what to do if things get worse but I rather not think about it. I hate having MRI’s done. I will need an IV for contrast so I will need to be hydrated so the nurse/technician can find a good vein. I just am really scared and my friend calm me down some. I know I will be better by morning, if i ever get to sleep. I am very tired but just not sleepy. I hate that.

I thought I would write because sometimes writing helps to put me at ease and help me to fall asleep. I just hope that I am not getting CES x 3. I will be very devastated if this happens, especially when I know I didn’t do anything. I have not lifted anything heavy. I have not picked up anything that might twerk my back or slipped or fallen. The only reason my back could be hurting is the change in temperature. And the pain has gone away. I am just left with my regular stupid ass leg/ankle/foot pain. And tonight it does not want to calm down. Course I took my meds a little later than usual. I was watching the Sox game so time escaped from me. I should have taken them when I came home from my cousin’s house. That would have helped some because I know it was going to flare up tonight.

I feel like I am going crazy. I emailed my psychiatrist to let her know what was going on. I usually don’t get panic attacks like I did tonight. I am usually able to handle them better but tonight I just couldn’t deal. My defenses were down for some reason and I just couldn’t cope. It was really difficult asking for help but I am glad I did reach out and someone answered after midnight. It is now 0400. I am going to try and sleep now. Just hope I don’t dream of being back in the psych ward again. That dream totally freaked me out. I was dreaming of ending my life and got very upset that I couldn’t have the pills to end my life. I woke up wrecked. It has been a bad day for me emotionally and physically. No wonder I needed to talk to someone. I am so glad I have therapy tomorrow. I am also going to see if the Bozo has time Thursday. I am supposed to go to the Sox game but maybe she has an afternoon time before the game. I don’t know. I hate feeling vulnerable. PTSD makes you feel that way.