Tag: chronic physical pain

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.

book is done! And other stuff

by Midnight Demon, posted in blogging, chronic physical pain, suicide

Book is completed. I finished it up today, sort of. I still don’t have a solid beginning or ending but the bulk of the book is done. Now I just have to wait for the editor to put me in her queue, make some changes and boom, I will be ready for publishing. I feel like a huge weight has been lifted off my chest and now I can open and read my reward!

I even got the acknowledgement of one of the consultants so I need to add his name or maybe just leave it as treatment team. He is apart of that.

I am so excited about this. I could if I really wanted to, publish it today, but I want a few people to read it first and give me their feedback before I proceed. I also want to print it out so I know what it looks like. Right now I know it is 160 pages but after formatting I think it will be double that. I was looking at some other publishing sites and they wanted as much as $9K for self-publishing! I couldn’t believe it! You got a lot of stuff for that price but still, that is still a substantial amount of money to put into a book. But I guess if you want it to do well, you might as well put the money into it. Unfortunately, I don’t have 9K so I will just publish for free and hope that it does well.

I am kind of scared that I am getting closer to the end product. All my doubts and fears are there. I know when it comes down to the last page of writing and hitting send, I am going to take a long hard look at that click button.

My side effects seem to be ok today. I didn’t take my dose last night because I didn’t want to be an elastic ball today. I paged my pdoc to talk to her. Just in case those feelings come back, but she hasn’t returned the page. I also sent her an email so she knows that I am paging her. Sometimes I don’t have the luck of sending pages through. Symptoms for the past few days have started around 4 pm and so far I don’t have any other than the soreness of the past few days. I hope I can take my dose tonight or that my pdoc doesn’t want me to lower the dose. I am so afraid of the voices coming back but I also don’t want to be an elastic ball being stretched and have restless limbs where I have to keep moving them.

I had a therapy appointment today. I also got snuck into one tomorrow. I don’t know how that happened. But the 17th is still off the table, as far as I know. I just need that day off away from my therapist as it is going to be a hard day. And I don’t want her to know why. I will just keep this to myself this time. I am not going to share it with my blog because it just seems too personal. I hope that you will let me keep my privacy. If I do write about, the blog will be a protected blog and the password will be midnight.

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.