Tag: complex regional pain syndrome

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.

Rest Day

by Midnight Demon, posted in chronic physical pain, depression

Rest day

I decided today would be my rest day for the week as I did too much yesterday. I was in a lot of pain and I think I wrote some interesting stuff to my therapist that has me worried. Mr. Hyde wanted to come out, least I think he did, but what was actually written was not his style. I don’t know who it was. I was really tired when I wrote it so maybe it was my deep, dark, true feelings about myself. I don’t know, it was just creepy. Then after I wrote it, I feel asleep for eight hours straight! I woke up around 7ish. But I didn’t get out of bed until my mother left the house around 9. I really didn’t want a conversation with her. I made breakfast (no coffee) and then took my pain meds and slept until about an hour ago. I had something to eat and then went to visit my sister. She is babysitting her friend’s baby and he is adorable. I want to see his baby toes. They are so cute! And he loves when I tickle his feet. He cracks up. So funny!

I haven’t worked on the TG paper at all the last few days. I am trying to make it shorter but am finding it hard to do. Plus every time I edit it, I seem to make it longer. I gave a copy to a friend for her opinion on it and to see where I should make the cuts, but I haven’t heard back from her. I probably will tomorrow. Least I hope so. But it’s not like I am in a rush. I still have a few weeks to work on it. I have taken the blog down and placed it as private so no one can read it. It will be available whenever it gets published on the suicide blog.

It’s really hot in the house, even hotter outside today. I still have time to walk to the post office before they close, but my ankle is bothering me so not sure I would be able to walk that far. It’s like three, maybe four, blocks to the post office. I really want to get this errand done today but not sure the pain afterwards is going to be worth it. I just took another pain pill so maybe if it settles down, I will go. I hate walking in the heat though. And it will be silly to take my sister’s car for such a short distance. Maybe the walk will wake me up a little more, though I am debating making coffee. Thing is, I don’t want to be up all night if I drink it now, though I usually have my mocha, latte, or coffee at this hour at Starbucks so I don’t know why I am so finicky. I will make the coffee and then go to the post office. Sounds like a plan to me! But so much for this being a rest day if I go out. I did rest most of the day and being out for 30 mins isn’t wasting the entire day, right? Right.

Day started off good…

by Midnight Demon, posted in blogging, depression

Day started off good…

Well, my day started off good. I met a friend this morning for coffee and we chatted until her train came around 1115. It was so good talking to her in person. She is someone that I have known via email for years and we don’t get to see one another, in person, that often.

As my father is almost a week late for his blood draw, I decided to take him today, thinking we would be in and out. Wrong. We were there almost a half hour and I hadn’t eaten anything all day so I was getting grumpy. The grumps got worse as I hit every single red light on from the health care center to my house. Then the bastard decides he wants to go home after staying a half hour. I am like WTF. I could have taken him home and be done with him, but noooooo. He wanted to see my sister. I am so annoyed.

My therapist hasn’t texted me with an opening today so I am guessing I won’t have a chat with her. It would have been nice given the level of aggravation I am feeling right now. Plus, a fire alarm is beeping because it needs a new battery is making me more annoyed than I should be. We just changed them this year so I don’t know why the hell it is beeping, other than the fact my mother buys cheap batteries. I had something to eat as soon as I came home because I felt dizzy. All I had prior was my mocha and some cross buns. I couldn’t finish the cross bun because it was so dry and I didn’t have anything to drink with it. So I ate half and went to pick up dear old dad. I am such an idiot.

My friend and I talked about whether or not I am gay. I still call myself gay even though I have come out as being transgender because I like women. I don’t think I can call myself straight just yet. It is confusing me. Something to talk to my therapist about next week. I was supposed to see my pdoc tomorrow but she canceled on me. Had to reschedule because she won’t be in the office tomorrow at all. Nice. So I have a day of rest. I should just go to the post office to mail my book out to my editor. I was supposed to do that last week but things just kept popping up. It’s all packaged and ready to go, I just have to go to the post office to pay for shipping charges and I am done. I thought about doing it today but didn’t think I would be able to walk after my meeting with my friend. It turned out to be a good decision (though in hindsight, maybe I should have gone to the PO and avoided my father entirely). My ankle started acting up by the time I got home to get my sister’s car. I should have had something to eat then, but I wasn’t hungry. Oh well. My mother is making soup for supper. I hope the dizziness goes away by then.

I thought my blood pressure might be low because all I took today were my blood pressure meds. Nope, I am still pre-hypertensive. Probably because I had a bad day on the road. I was behind every moron in my state, they didn’t know where they were going. Some turned their left blinkers on and went right instead. I am like WTF. I swore the whole time I was in the car while singing to country music. That annoyed my father. Good!

I hate being in pain and not being able to take my pain meds. But I was driving and can’t risk being under the influence while driving, though with my blood sugar being low, I don’t think that was good either. Oh well. I was careful. I am home now and not going out again so I can safely take my meds. I shut my phone off because it was annoying me too. I kept on getting text messages every few minutes from the T, my public transportation system. It was telling me of delays. Well, that is good but I wasn’t using the system today, other than the morning. I really don’t care that the buses and trains are late now that I am home for the evening. I have a headache, that I am hoping will go away on its own. I am out of my headache pills but I know once I have something solid to eat, it most likely will go away. My stupid father had to hit me on the head, saying there was a mosquito in the waiting area of the lab. Yeah, right. Did I mention how much I can’t stand my father?? If I get possessed to take him somewhere again, please shoot me or knock me on my head or something!