Tag: CRPS (formerly RSD)

let it snow, let it snow

by Midnight Demon, posted in blogging, cauda equina syndrome

Let it Snow, Let it Snow…

I went to the store early this morning to get some food for the weekend. I have been dying to try out a chipotle mayonnaise on a chicken sandwich. Today I finally made it and it was so good. I also did some shopping for my mother who needed milk.

My day started off early as I woke up at six. My foot acted up about a half hour later so I took some pills and went back to sleep. I thought I would chronicle the day but I realized I already had a blog called a day in the life of the midnight demon so I nixed it.

I have been in a relatively ok mood. It’s neither good nor bad, kind of in between. I still am fretting over what my therapist will do/say about me taking this week off and then her being off the next two weeks. But I guess I will find out Monday, that is if the snow doesn’t cancel school. I will be pissed if that happens. It started snowing around 3 and is supposed to continue until tomorrow. My back is not liking this weather at all. I am having a flare up and sciatic pain in my left buttock. I just took something for it because I don’t want it to get worse.

I am concerned about a fellow blogger. She is having some psychotic symptoms that are out of control but because of some issues with an upcoming vacation, she can’t go in the hospital, where I think is where she needs to be as she is getting worse not better with the increase in medication. I am really worried because I know how bad things can get with psychosis and paranoia. Been there, done that. But I am not her so I can’t make judgments of the hospital kind, only express my concern. I hope this quiets down for her and she gets better soon. I also wish there was a better system for her other than just going to the ER because it is the weekend. I always have my pdoc on call in emergencies. But I guess not everyone has that and that is a shame.

I haven’t heard from my writing partner in a few days. I hope things are ok with her. I know she had a speaking engagement yesterday but was expecting an email today at least. But she usually takes the weekend off from email. I don’t know if I could do that. I am almost always on the laptop, playing games and such so it would be hard for me to ignore an email if I got one. Plus my friend usually emails me before we set up a time to meet up so it is kind of good that I don’t keep off the email on weekends.

Wind is rattling the windows. And it is so fricken cold. I don’t know what my mother did but she turn the gas on a pilot and didn’t light it. I came out of my room and smelled gas. I didn’t use the stove today so I know I didn’t turn any knobs accidently. I opened a window to let the smell out for a few minutes but she closed it while I took a shower. The kitchen is the coldest room because my asshole cousins didn’t put enough insulation when they were rebuilding it. We also have a crummy radiator that works when it wants to. The heating system is a joke. We have to turn it on to 70 for the house to get warm, 80 to get it hot. We have gas heat, which I find more convenient than oil heat. I grew up with oil heat and I hated it because you had to have at least $300 (USD) to get a decent amount of fuel in the tank and that was a lot of money when you were on welfare. I am sure the cost is more now than it was back then. I feel for those that can’t afford heat. I know what it is like to be cold. We were never on the streets or close to it but the house I grew up in was drafty and my room had no radiator. So I had to pile on the blankets to keep warm during the winter. I didn’t mind it as I liked my room being drafty and cool. It was better than it being too warm. But since getting my nerve injury, I can no longer tolerate either hot nor cold. The cold weather causes spasms and arthritic pain. Hot weather, I just can’t tolerate, at all. That is why I need the AC. I used to love the cold but it doesn’t like me anymore.

you learn to live with it

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

You learn to live with it

It didn’t happen overnight. It didn’t happen in a week. It took some time but you learned to bare it. Except on nights like this when the pain keeps you awake and nothing eases your mind to bring on sleep. You think of death as your only way out. You think of what more your doctor can do to ease the pain but he doesn’t know because it’s fucking midnight and he’s not on call anyways. Besides, they don’t want to hear you cry in pain. They just want you to live with it. And that is the toughest thing to do.

I have been battling pain since seven tonight. And it’s been a trigger for me. CES started when my left leg went out on me and then I was left with foot drop. I wasn’t told to live with it. I was told my ass was going to have surgery for a condition I had no knowledge of. I still don’t have complete knowledge of cauda equina syndrome because it varies in so many people. Sometimes the right side is affected. Sometimes it is the left. In my case it was the left and I still have nerve damage twelve years later.

Yet I haven’t been told to live with the pain. No, not yet. But you have to or you lose your mind or your life. It is a conscious effort every day to not stare at the bottle of pills or some other weapon of destruction and not think, why not? You have to take the walls down piece by piece of the strength you have and build it back up again with new ones to block the pain out the best you can. But sometimes, like tonight, the walls fails you and you are in mega pain. My foot/ankle/leg are hurting all at once and all you want to do is scream. But you can’t because it’s after midnight and everyone else is asleep. Thoughts of wanting to amputate run high on these nights. It’s a good thing there isn’t a chainsaw in the bedroom.

Meds kicking in is a joke. They may lessen the pain some but they do nothing to ease it 100%. At my best, the pain is always on the level of 3 on a scale of 1-10. At my worst, like now, it can be an 8-12. So I will have to take a third pain pill to quiet it down or I won’t be waking up at 0645 like I need to. Got to take dear old Dad for his tests.

I hate my leg right now. And I should be able to live with the pain. And I will. But not tonight. Tonight I am writing and writing until I pass out because people should know that despite having surgery for CES, you are still left in pain. It is called nerve pain and it sucks. Nothing eases it except narcotic medications or some anti-convulsant drug and that is some of the time. Oh how I wish I could call my doctor now. Have him see the veins popping out on my foot, how swollen my ankle bone is and how I can’t get it down with ice or elevation.

But I got to live with this? I can’t kill myself? That really sucks when you know you are in so much pain, physically, and you can’t end your life because of it. I have too many people I’m responsible for. People say they will miss me. I often wonder if that is true.

My psychiatrist told me tonight to take my meds and get some rest. How am I supposed to do that when I got pain this bad? I keep hearing her voice telling me to go to bed. But I can’t sleep. Pain is just too fucking bad.

I didn’t do anything to cause this. I didn’t stand too long, I didn’t walk too far. I didn’t go up and down the stairs too much today. Well, maybe I did, now that I think about it. I went downstairs a few times to empty my recycle bins and get rid of some boxes in my room.

I wish I could just disappear, permanently, where there is no more pain and no more agony. No more depression. But I don’t want to be happy all the time. That would be too weird for me. Just being content is all that I want. Content means being neither sad nor happy but not being miserable either.

I just want the pain to stop permanently. Then I maybe I could live my life a little better. Third dose of meds and an Ativan have kicked in. And this is how I live with it, without putting a noose around my neck. I put my hat on backwards and I write, until the meds kick in.

It helps to write. It really does.

this is me swallowing my pride

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

I worked on my book and I think that it is a good book. It might not make the New York Times list but as long as it sells 100 copies I will be happy.

I have been in a disgruntled mood. My therapist never got back to me because of her commitments yesterday. I just wish she could have texted me something so I wasn’t hanging all day. I am not having so many flashback symptoms but I think that has more to do with not being in a lot of pain today. I have been experiencing more side effects from the Abilify than anything. I have to take Ativan to deal with it. And it makes me feel sluggish and sleepy. But as long as it takes away this rubber band feeling, I don’t care. I can’t lower my dose because the psychosis will come back, and quickly like it did before. I also don’t want to be in the hospital for Christmas. I haven’t called my psychiatrist yet. I am hoping they will settle down some so I won’t have to. Not much she can do about it anyways other than tell me to take Ativan. If that doesn’t work, I am sure I can take benedryl to help. I have the need to be snowed anyways. I have been in an awful frame of mind and my stupid therapist wants to activate Mr. Hyde. WTF, really?? My suicidality has been on an all time low and you want to activate the demons? I was toying with her today about it. But it’s not going to happen. I can’t risk taking my life for no reason. I have an appointment with her all this week to make up for Monday I guess. And next week she is trying to get me to open up about the personal reason why I need the 17th off.

I need the 17th off so that I can think. It is going to be a very depressing day for me. And I want to spend it alone, without having therapy. I think I am going to finish drinking the rest of my crown royal bottle. I think alcohol will go nicely with the end of thinking of suicide, but no one has to know about it. I don’t want anyone to know the real reason. My therapist doesn’t read my blogs unless I send them to her. So I am safe.

I have no idea if what I wrote makes any sense. Please leave comments if you think this is a good idea or if I should see my therapist on the day that I am not going to be thinking of ending my life anymore.

I don’t know what this blog is going to be like after I set this into motion. I know there will be blogs where I talk about death. It is the nature of this beast called pain. And of course the first song from my “Just Taylor” playlist is “back to December”. “so this is me swallowing my pride…”

PTSD and of course CES

by Midnight Demon, posted in blogging, chronic physical pain

I took a break from writing today. I got overwhelmed with my book and decided today I was just going to do nothing about it. Actually, other than eating, I haven’t done anything today. It was icy today so I didn’t want to venture out. I texted my therapist last night and just about a half hour ago to try and get her to call me. I am feeling stressed out about the flashbacks I have been feeling since my writing yesterday. The pain in my ankle and it going to sleep on me hasn’t helped. When I first was diagnosed with Cauda Equina, that was the first symptoms. I had numbness in my leg from midshin down to my toes. And OH MY GOD the pain I felt if I put any pressure or weight on my leg if I tried to walk on it. I had forgotten these details until I wrote that stupid introductory paragraph.

I am kind of pissed off that my therapist hasn’t responded to my text. Usually she writes back if something will open up. I hope that she will call me. I just need her reassurance that I am not losing it. This book is taking a lot out of me than I ever dreamed about because it is so personal. I know I have posted a few blogs that dealt with the details of my injury, the bowel and bladder problems, etc. I am in chronic PTSD model anyways and throw in a lousy couple of memories and BOOM, Flashback City! I know I am seeing her tomorrow. But it would be nice to talk to her after the long weekend away from her I had. And we didn’t have a chance to talk on Thursday.

I have been sleeping on and off most of the day. It’s been too cold to leave the comfort of my bed, except for eating. I didn’t even make myself a cup of tea. I might make a cup later. I just feel so cold and my ankle isn’t helping because it is cold all the time. Like now. I swear I just want to amputate the thing so I can go on living a somewhat better life. Granted I would need a prosthetic but at least I won’t have pain. Or if I do, I will know the reason for it. My ankle hurts for no reason and it is all because of nerve damage. I don’t know if it is new or old. My neurologist doesn’t think getting an EMG will be useful at this point. I have to agree. There is no way to tease out the old from the new.