Category: cauda equina syndrome

cup of coffee

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

Cup of coffee

I was up for at least 20 hours yesterday. Pain was the chief factor in keeping me up. Other than the ghosts in my head. Talking about stuff stirred things up. My goofy therapist thinks that I should write about it but there is really nothing to write about. What happened, happened and writing about it is not going to change the facts of the matter. I don’t think I will ever get closure to what I am feeling but oh well. Such is life.

I made breakfast this morning, pancakes. I didn’t think it was going to exhaust me but it did. It also flared up my sciatica. The temp is dropping so of course my back is acting up. But I really wanted a cup of coffee but I couldn’t make it. I was in too much pain. I waited till after therapy to make it. I used my last K-cup of Starbucks coffee. I just hope I will have at least 10 extra bucks next week to get another pack. Coffee is very good made on the Kuerig, though it is stronger than the coffee at Starbucks. It just is brewed that way.

Been listening to Pandora more than my MP3 player. The nice part of listening to Pandora is you don’t have to buy the songs you are hearing, unless you want it really bad. But it’s a nice alternative to my 200 songs that I have been hearing since last year. Those songs are about 15 hours of play time, though the shuffle doesn’t work right. And today the player just stopped working so I decided to listen to Pandora instead of turning the app back on. It is so aggravating that it will stop playing in the middle of a song.

I am not planning on going anywhere today. I am feeling really down since my therapy appointment. I need to shower and I really don’t feel like it. Thursday when I have my appointment with my father, I have decided to wear a diaper and I am not looking forward to it. The only bright side of it is that I will be dry. Thing is, I showered yesterday so I don’t feel like I should shower today. It is going to take every ounce of my being to do this task. I just am not looking forward to it. And I know it will suck all the energy from me. I really don’t remember the last time I took a shower that woke me up rather than tired me out. Obviously before I was in chronic pain. I could just cry right now for some odd reason. I just am so tired of being tired and in pain all the fricken time. But the coffee I had did its job and I feel a little more awake than I was before.

My psychiatrist has nicknamed the new part, Jekyll. I think it came out while I was in therapy today. I almost blurted out “I hate you” while I was on the phone with my therapist. It just came out of no where. I just got really angry but I didn’t show my anger. I kind of stepped back and talked really low. It was weird. Last night I finished reading the book of Jekyll and Hyde. It was very strange but enlightening. I loved the author’s use of language. It was a very good book. I don’t know that it has anything to do with dissociation, but the fact that evil could exist between one man and two parts is incredible. Hyde is like my evil part. He holds the suicidality that I hold close to my chest. Jekyll is the part I am clueless about. Though the part in the book is that Jekyll is benevolent and charitable, my part is angry, far from being kind. He holds hatred and disdain.

I do wonder if this part is what has been stirring up the memories I have been experiencing. It just is making feel really uneasy and I don’t want to deal with them. I rather they just stay where ever they were before I remembered them. They are not flashbacks, thank goodness. But the images I am seeing might as well be intrusive thoughts and I don’t like what I am seeing. And all of this started because I drank a cup of coffee that woke up my consciousness instead just taking a nap.

Don’t dream it’s over

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

Don’t dream it’s over

I heard this song today and am reminded that despite a long road to recovery, I am still stuck with the condition known as Cauda Equina Syndrome (CES). Today I talked a lot about it in my interview with the 1st years of medical school. There were like 5 or 6 students and three physicians in the room, one of whom was the person that interviewed me. He knew nothing about CES as he didn’t ask me one red flag symptom. He was an older gentleman so I am sure that he never heard of such a syndrome before. My psychiatrist was grateful I brought it to the students. She said she owes me one. But I don’t really know what that means. I just laughed because it was fun doing the interview.

My therapist read the last blog post that I sent her. She said that I summed up my traumatic experiences all in one paragraph. This left me feeling like “what is she talking about” so I had to read it. I always feel like my writing is cathartic so once the words are in a word doc or a piece of paper, they quickly lose their power in my memory banks. The paragraph was powerful and I couldn’t believe I wrote what I did. It made me wonder if I am ready to face the trauma I have endured over my lifetime, just one piece of it anyways. It is something that I have not discussed in great detail, not even with my therapist. But there is a song that keeps reminding me of what I went through and so it is on my mind a little more these days.

I have a beef with my doctor’s office. I saw my PCP’s Nurse Practitioner (NP) for a blood pressure check. My blood pressure is still in prehypertensive range. Not good. So instead of playing with the new blood pressure med I am on, she decides to add another medication. WTF. She was almost a half hour late so I couldn’t argue as I had to meet with my psychiatrist, and even my psych was like why am I being put on a third medication for the same condition?? I emailed my doc’s office to sort this out. I am not going to take it because it also acts as a diuretic, something I don’t need to be on. I already have issues with my bladder leaking and me being on something that is supposed to make the kidneys work better just isn’t going to fly with me. I also said that in the email, about the leaking piece, not about it not flying with me. I have enough problems and don’t really want to start wearing pads or diapers. So far I have been lucky to avoid them, but I think on days that I am going to be out more than a few hours, I might have to consider wearing them. I would use pads but they just don’t fit in boxers. I really feel bad for men who have to use tighty whities for pads. Least that is what I think they would have to wear. But I hate them as much as some men do.

I was talking to a friend today about a CES issue. She didn’t reassure me and said that I should talk to my neurologist about it. I haven’t seen her in over a year. And this issue I rather not be apart of my medical record. So now I am conflicted on what to do. I don’t even know if going to my neuro will help me with the issue. Course the easy thing is to stop doing what I am doing to cause the issue and problem solved! But I don’t know if I am having more nerve damage or not by ignoring the issue. What worries me is that I have a disc that is touching the nerve root of my issue. It isn’t compressing the nerve root so no one thinks I should have surgery. Although I am not advocating for more surgery as I most likely will need a fusion, I think that might be why I am having my issue. Either that or my nerves have suddenly have become awakened and now I just got to deal with them. Either way, it doesn’t look promising to me and it is an especially embarrassing topic for me. If I do see my neuro, at least I won’t have to mail her my book. I could just hand it to her!

The thing about my neuro is that she is great and all but her office staff sucks like yesterday’s garbage. Making an appointment is always a hassle, getting through to the office is always a hassle and then if I don’t have the copay, they cancel my appointment. Last time, they told me the wrong day of my appointment and I got charged for it. I have not paid it because they screwed up, not me. If they didn’t change the original appointment to begin with, none of this would have happened.
It has been a month now that I have been on an antidepressant. Since that time, my suicidality has decreased dramatically. I might not be euphoric, but I am doing okay. I don’t have mood swings like I used to. My sleep is still wonky but it’s better than it has been. The only sucky thing is that no matter what time I go to bed, I am always up before six. And on days like today where I had to be all over the hospital between my two appointments, it sucks. Even though I worked there for fourteen years, I goofed and made a wrong turn, thinking it would take me to the building I needed to go. NOPE. No access from the 2nd floor. It sucked because I then had to walk back to where I came from to go outside to get to the building I needed to be in. Lot of walking today. And my ankle is thanking me, oh so kindly. NOT.

Normal vs Abnormal

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

Normal vs. abnormal

I realized today that since having a nerve injury, I don’t know what is normal anymore. I don’t know what it is like to not live in pain every day. I don’t remember what it was like working a full time job while suffering from chronic pain. I also don’t know what it is like anymore to go to the bathroom and not find surprises. This is what my life has become since getting Cauda Equina Syndrome and being diagnosed with Complex Regional Pain Syndrome (CRPS).

I can also say that I don’t know what it is like being normal without having voices in my head that talk to me all the time. My therapist and I were talking about this during our last session. I have to hear a “voice” while I read. It narrates the words. It usually is male as I frequently buy books that are authored by males. But it is the same male voice that hear. Without this voice, I cannot read. The words just do not make sense. Apparently, my therapist has told me that this doesn’t happen with someone else. She doesn’t have a voice that narrates when she reads something. I find this curious and so does she. As she puts it, “someone” has to “read” to me. But I have always heard the voice. Maybe it is just my muse reading to me. I don’t know. But then, I have lived my entire life since the age of five with hearing voices and keeping it covert. I guess the only ones that know I hear voices are the people that read this blog and read my memoir. Few family members know. I think my mother thinks I was “cured” I first hospitalized at the age of 16.

I was thinking about this whole normal vs. abnormal thing because I don’t remember what it was like having a normal bowel movement. I have to take stuff to go where as before, I just went whenever. I might have been constipated but if I don’t take stuff for it now a days, I can be backed up for a week or longer. And then I am really uncomfortable. I also don’t remember what it was like to actually feel the stool leave my body. I don’t have that sensation anymore. It has slowly come back but if I have loose stool, I really don’t feel it. Just like I don’t feel when I leak urine. My boxers will be wet but I don’t feel it. It’s not until I actually urinate that I notice I leaked.

I also don’t remember what it was like showering and feeling invigorated by it. Lately, it just has been an energy draining experience. I might have energy to take a shower, but then by the time I am done, I find that all my energy is gone. I was talking about this with a friend of mine the other day when we met up for coffee. She said that she would say this to her daughters, and they wouldn’t understand how it could be so draining. I thought I was the only one to feel this way but apparently, those of us with chronic pain also feel like this. I haven’t showered since the day I met my friend (three days ago). I plan on taking one tonight, before bed, so that if it does drain me, at least I will be going to bed anyways.

Also, since having the nerve injury, I find that I cannot tolerate heat. I never could stand the heat before my surgery, but after it I found that if I wasn’t in cool surrounding, I get very irritable and cranky. I don’t know how my mother can stand the humidity of the house today as the temp is in the 90s. I barely made it home but thank god for an AC’d bus. Waiting for it in the heat was very unbearable but there was not much I could do about it. There was a kid, probably around 4, that was playing with his ball at the station where I was waiting for the bus. He was annoying me because the ball was going all around me. I know that if the temp was cooler, I probably wouldn’t have been so annoyed. But I wanted to get out of the house as I have not been outside since Thursday when I met with my friend. My ankle does not like me right now, but I don’t care. I have the rest of today and tomorrow to rest it. I have plans for Monday to have lunch with my Aunt. I hope she doesn’t cancel on me again. We have been rescheduling this meet up for months now. I know she wants to chat about my book and about me. I am kind of nervous about it because although she is family, we aren’t exactly close, least I don’t feel that way. Then again, even with my sisters I don’t feel “close”. Some days I feel more like an outsider than part of a family, and I live with them!

I have decided to look over the letter that I wrote to my therapist the other night. I am going to type it up and then “blog” it so she can read it and try to make sense out of it. I will send it to her, too. She like having an archive of my letters. She is a weirdo, that is for sure.

Random Sleepless Post

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

Random Sleepless Post

I took my meds a couple of hours ago and then took my pain meds afterwards. I should be sleeping by all accounts but I am not. I think it is because I had coffee late in the afternoon. I am tired but my brain keeps going.

Last night, I was feeling the same way when an alter, or some part of me, came out and wrote my therapist some nasty, commanding, stuff. It scared me. I was going to type it up and blog form it so she could read it, but I am scared that part of me will write again. I thought Hyde was writing but it wasn’t his style. His is usually a goodbye message. Not an angry, commanding tone to it. I don’t know what to make of it. I might have an appointment with my therapist on Monday but it’s not definite. She said she will let me know if she has the time available. Otherwise, I won’t talk with her till Tuesday.

I know I have an angry self. Everyone has one. But nothing provoked this side of me to show, I wasn’t angry until I was writing and the weird thing is, after he wrote, least I think it was a he, I fell asleep for a little more than 8 hours. I didn’t have any weird dreams. I didn’t sleep for a few hours and then wake up, none of the usual sleep pattern that I have been having for weeks, least since I left the hospital. I didn’t sign the letter. I just don’t know what to do or who to talk to about this. I am not in danger to myself. I don’t feel suicidal. I am upset but not horribly. I just am confused. This has never happened before. And I am pissed off because I don’t have a name for this person or this person didn’t tell me its name. I am so mad at myself for allowing this to happen. I knew someone wanted to come out. It was on the surface, I felt it. But it was unfamiliar to me. I would read what it wrote but I am so afraid of being triggered. What if it writes again and is more nasty? I don’t want that to happen or worse, what if I lose control and totally dissociate and it does something?

If I remember the argument, it was something to the effect of letting me be a female rather than a male. It was arguing with the notion that I am not really a male, but a female, and my therapist needs to stop giving in to the transgender idea. Least I think it was referring me as a she, rather than a he, and it was calling himself a he, if that makes sense. It is so bizarre. I don’t know if the handwriting changed as I haven’t looked at the page. Once I get enough courage to look at it, I will type up the letter and blog it for my therapist. Now that she has mastered password protected blogs, I can do so without having to send her snail mail letters.

Ankle is killing me and I am hungry. I think I am going to make a peanut butter and jelly sandwich on scali bread. It is my favorite types of bread. Tomorrow I am going to get a fricken burrito. I have been craving it for a while now. Actually, I have also been craving burgers but I can’t have them because I am watching my weight. My sister was supposed to bring home a black bean burger from her work. I hope she did because those were so good. It was like Spanish beans with spices but in a burger patty (no meat just beans). I don’t know how they make them. I tried looking for the recipe online but none had refried beans as an ingredient and I think that is what held the patty together. I also love refried beans. I am going to keep hounding my sister until she brings them home again or at least gives me the recipe for them. They are very yummy!

My ankle is still being a bitch. I don’t understand why. I haven’t done anything in the last few hours to warrant such pain. I just wish it would go away and never come back but that isn’t going to happen. So I just have to take more pain pills because otherwise, there is no chance of me getting relief. Nothing else works for me, not even the nerve pain meds. If the nerve pain meds aren’t touching me, obviously it is not nerve pain. I have tried explaining this to my PCP before and it just falls on deaf ears. But I know it is physical type of pain, a tendonitis like my physiatrist thinks, coupled with complex regional pain syndrome. I don’t know how I got it or the tendonitis. Well, the tendonitis is because I don’t walk correctly and I still have foot drop. That was caused by my initial injury of Cauda Equina Syndrome. I still have weakness in my foot, which causes me to walk incorrectly. I have to wear an orthotic to walk right. But even then, my ankle still hurts. It constantly feels like someone is trying to rip it apart like you do a chicken wing. Or it feels like someone is jabbing me with a knife. Either way, it sucks feeling this pain every single day, 24/7. Right now my pain is an 9 on a scale of 1-10. I just took a couple of pain pills so it should quiet down some. If not, I will take some more in an hour or two. Last night I was hurting so bad, I had to take a stronger pain pill. I hate having to take that pill because it constipates me to no end. And I hate being backed up. But I took my senna tonight so I should be ok for tomorrow. Sucks that I have to take a pill for this and that, just for normalcy. It sucks having a chronic pain condition on top of mental illness. Just makes you want to harm yourself sometimes. And people just don’t understand the chronicity part. They think that once you are out of surgery, you should be healed and be okay. Well, you aren’t. I have scar tissue on my nerves so I know that is the reason for my pain all the time. And there is nothing that can be done about that. Removing it will just cause more scar tissue to form.