Category: cauda equina syndrome

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…”

I am lazy

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

Bitch rant

I have to complain about my game that I play consistently, on a daily basis, a few times a day. I love that this game gives you missions to complete but now they are getting ridiculous! For even the missions have missions. And you need the help of your neighbors to complete them or you might as well kiss the mission goodbye. I have opened other Facebook accounts just to play this game and then I realized the other day that I am just playing against myself! But unless you have a “neighbor” to give you all that you need every day, there is no other way to win the game/mission. Unless you spend money on the game for horseshoes. I used to do that when I was working. Now I pick and choose when to get horseshoes. I know none of this is making sense because I don’t think anyone plays Pioneer Trail on Facebook but if you do, don’t start. I have a lower level account and finished ONE stinking mission and got NINE, 9!!! In its place!!!

Talked with my therapist today. Though I don’t know if you want to call it really talking. She was quiet today. So I was too. Weird how that worked out because usually she is excessively talking about something. We talked about the transgender issues again and she pulled a name out of a hat, another doctor for me to see. I told her she doesn’t get that I don’t want to see any more doctors. I am DONE seeing doctors. The only one that I want to see if my primary care doctor and that is it. I don’t want to see any of his colleagues either. Unless I develop another fricken problem, I am not seeing another doctor. I know this doctor is different and will help with the transgender stuff. But there is a chance she could be another bitch that refuses to listen to me and then where will I be? What if she deems me too suicidal and decides that treatment for transgender is just too much for me. I can’t go through that type of rejection. It will kill me.

We also talked about the consultant. I wanted her to have him as a support and she only wanted to hear that I will see him again. Well I can’t because I can’t afford him, not with my insurance. I hate my insurance but I have to make do with it. But I can’t see an out of network doctor and this consultant is that.

I don’t remember what else we talked about. I really wasn’t in the mood for talking. I just wanted to go back to sleep. I have the same time appointment tomorrow to talk with her. Yay…not.

I didn’t work on my book today. I felt like crap too much to do much of anything. I didn’t even make myself coffee. I should start psyching myself up now to maybe leave the house tomorrow and get coffee. I knew that having Keurig cups was going to be the death of me. Why should I leave the house when I have coffee at home. And I have two different flavors of Starbucks coffee. I have the house blend and my Pike’s coffee. Both are sooooo good. But I need to get out of the house. I have been in since Saturday, maybe? I don’t even know the last time I left the house, oh dear. That should tell you something…And tomorrow is Wednesday. So almost three days in the house. I don’t think I have showered since Sunday.

And to make the day worse, my favorite catcher for the Red Sox is now going to a National team, the Marlins. Great. Now I got to deal with the likes of a guy’s name I can’t even begin to spell. You say it Perninski, but there is a z and J in there somewhere. I have to look it up and I am too lazy.

Am I a writer?

by Midnight Demon, posted in cauda equina syndrome, depression

I haven’t done much more than drink coffee and take a shower, which both seem to be an accomplishment given how I have been feeling lately. The weird mood has ceased and I am back to my depressed self. I am not thinking about harming myself but it is in the back of my mind. I am listening to the same country music songs over and over. It’s a compilation of artists that suit my fancy, from The Band Perry, Taylor Swift, Luke Bryan and Blake Shelton to Daughtry, Goyte, and Rob Thomas.

I should be working on my introduction but have decided today is my Sabbath and I am not going to work, other than write my daily blog. I thought about doing some editing but I am just not up for it. I should make a table of contents. I might do that later.

I just can’t seem to get motivated today. I woke up in pain. I don’t know if I was sleeping wrong or my foot just decided it was time to get up, but it has been throbbing since eight this morning. I guess the pain meds that I took before bed wore off. But the pain didn’t deter me from taking a shower. And I rested after I took a shower because I am not going out today.

Thanks to a fellow blog reader, she found me the blog that I was looking for yesterday. I added it to the grief section of my book. I still have to come up with another three thousand words or more now. Just 3,000. Oh boy. I don’t know if I can do it. I know the ending is partly done as I am going to stick in the future blog in it with what I got already. Now I just have to work on the introduction and call it a book. I started the intro yesterday but didn’t get too far. Words were coming out like I was pulling teeth. I only wrote a page and a half and that took quite a bit of effort. I don’t know why words come easily to me at times and other times it so painful. I know when I am feeling content, I don’t write at all. It’s only when I am darkly depressed or slightly depressed that I can express myself. Reading Touched With Fire again is confirming this. Though I don’t really consider myself a writer, if only because I have not published anything formally. I know my therapist will bring up the paper and poem I had published when I was a teen but I don’t really count that as writing. Well, maybe. If I could find the book I am sure I could tell.

Thing is, I never wanted to become a writer. Sure when I was reading Star Trek: TNG books, I thought I could write one but it always seemed out of reach for me. I wanted to study medicine, to help other people. But when that went up in smoke, I just quit. I suffered and I managed a job that at times I hated for fourteen years. I wasn’t making big bucks working at the hospital. Decent money sure with benefits and all, but it didn’t make me happy. I did the work of three people and still managed to do it accurately. It makes me sad that I can no longer work at that job, least not when my foot is still the way it is. And because of my mental illness, I am not sure I can really hold a job again. I probably could hold a part-time job, but even that will take some doing. I know that I can’t work as a barista at Starbucks because there is too much standing and lifting. But I might be able to get away with it for a couple of days a week. But I don’t know if I want to go back to retail. I swore after my days of Somerville Lumber, I would NEVER go back. I couldn’t stand the bitchy customers who would argue over a nickel or penny difference. I so wanted to reach in my pocket and give them a dime, just so they would leave!

But when the time comes for me to look for work again, I hope that I am well enough.