Tag: chronic physical pain

I just don’t know anymore

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

I just don’t know anymore

I have been in pain for more than 24 hrs now so if this is a little squirrely, that is why. I just cannot take the pain anymore. It is driving me absolutely insane. I spent the last hour or so writing in my journal things that shouldn’t be mentioned in the blog (stuff my therapist wanted me to write). I felt so ashamed afterwards. I was stuck with images in my head of the events that happened to me. I just want to be dead again. I know it has been at least a month since I last felt this way. Certainly was around the time of Robin Williams’s death. I felt like it was my turn. Well, dammit, why the hell not? I am so sick of being in pain.

I have tried to control my pain but my meds seem to be ineffective. I think I might have to take the stronger meds to break the cycle. But I don’t want to because the last time I took that drug, Jekyll appeared. I am wicked tired and all I want to do is sleep and I know that if I take this drug, chances are that Jekyll will come out. And god only knows what he will write. I find it odd that I have two “alters” and they are both male.

I didn’t take a shower today. I got a migraine and then things kind of went downhill after that. My pain worsened to what it is now. It is throbbing like a SOB and stabbing at the same time. It hurts right at the joint where my foot and ankle bone meet. That area is the most painful right now. I just want relief. I have contemplated taking the handful of pain pills that I have left. It will really suck if I take them because then I will have NOTHING. I know I am going to run out of my meds before the 28th of this month. My doc is supposed to write a 28 day supply but he wrote it for 30 days. Big help, not! I don’t know why I told him I needed less pills. But then, things were going well and I wasn’t in pain as much. The past few months have been awful and I keep meaning to tell him I need more pills because it just isn’t enough but I keep forgetting. Plus I am scared that he will say no. I doubt it, but you never know. I bet if my pain were under control, my blood pressure would be too.

I keep fighting sleep. I know that if I go to bed now, chances are good that I will wake up around midnight or 1 or 2 in the morning. I took my meds so I don’t have to get up again but I might have to go to the bathroom. I drank a lot of water at dinner because I am dehydrated. I didn’t eat too much, just had breaded cauliflower for dinner. I wasn’t that hungry. Which is good because I feel bloated.

My mother just struggled to get up the stairs. Her life would be so much better if she would take something consistently for her pain. But nope. Won’t even take a damn aspirin. Pisses me off because she always complains she is in pain. I refuse to give her sympathy because I know there are meds out there she can take but she won’t so there.

I have the ceiling fan on despite it being cool outside. I have been having hot flashes for most of the day. It is only about 70 degrees in my room so I don’t know why I have to put the fan on but I am hot and I hate being hot. I think it is because of the damn pain I am in. 24 hours. I didn’t even do too much yesterday so I don’t know why I am in so much damn pain. But I guess walking is my downfall. And my sister thinks I will be able to walk a dog. Please. I can barely get to where I need to go without hurting myself and you want me to take care of an animal?? NO. Not happening. Get a cat. I will clean the litter box twice a day. That I can do!

I don’t know why I am in so much damn pain. It’s not like I did anything today. I didn’t go up and down the stairs too much, but maybe I did. I never know what is minimal and what is a lot. My body doesn’t bother to tell me until it has surpassed its limit and then tells me the next day or later that night when I want to fucking sleep. It is terrible. Normal ankle movement should not bring you such pain!!!

The only thing keeping me sane right now is listening to music. I need that muse in my head because without it, I think I might do something drastic.

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.

Sleepy Sunday

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

Sleepy Sunday

I slept most of the day today. I only woke up to use the facilities and then go back to sleep. I got up around 3. I then played my game for a little bit. I had some stuff to harvest but didn’t feel like doing it last night.

I think I leaked while I was sleeping. It has me a little bit worried but I will be taking a shower shortly. My clothes just felt wet. But they were dry to the touch. Very weird. I really have to psych myself up for showering because all I want to do is sleep.

I was having weird dreams, like I was still in the hospital and stuff. I woke up in sweats though my room is cool. It is a very cool day today. My mother has the windows and kitchen door closed. She normally has them open. She made chicken soup for dinner.

My leg is hurting me and I really don’t know if I want to shower. I know I need to. It has been more than a few days since I last showered. But if my leg is hurting, showering is going to be difficult.

I must have been in a bitchy mood last night. I read and re-read the text I sent my therapist and it makes no sense. Good luck to her if she can figure it out. I was really tired yesterday as I was up at 4 in the morning. I guess that is why I am so sleepy today. The weird thing is, that I haven’t taken anything that would make me so sleepy. I haven’t take not one pain pill all day. All I did take was my blood pressure medicine.

Still can’t find the pill that escaped. If I don’t find it soon I might have to take a week off the pill so that I am back on schedule. I just don’t know where it would have gone. It’s a small white pill against gray carpeting so it should be easy to spot. It is pissing me off that I can’t find it. I keep hoping it shows up but it hasn’t so far. Rascal.

I think I am going to go back to sleep. I can barely keep my eyes open typing this.

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.