Tag: cauda equina syndrome

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.

it sucks living with CES

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

I still have been in a weird mood. I don’t know why. Seems so weird that last week I was in the depths of a suicidal depression and this week I am the complete opposite. I am not manic or anything because I am eating and sleeping at least 6 hours. I keep waiting for the shoe to drop. I am a little more depressed today than I was yesterday though so maybe I am going back to my normal depressed self.

I editing my book today and I just felt sad about it. People are going to be reading about my condition called Cauda Equina Syndrome (CES) and know about my difficulties going to the bathroom and my issues with taking a shower. I know I shouldn’t really put it out there but my book is compiled of my blogs. SO the words are out there. I have not gotten any criticisms or negativity on my blog. But I don’t know if my book will make the headlines or anything. It will be the first book that I know of dealing with CES and what it is like living with this condition. The thing is people need to be aware of this condition because it can happen to anyone. It doesn’t discriminate. I am no medical professional but trust me you wouldn’t want this condition to happen to you. It sucks living with CES. You have medical professionals that don’t care after you have had surgery about the nerve pain or the nerve damage that leads to possibly another chronic pain condition known as CRPS (Complex Regional Pain Syndrome). You get this condition and you are pretty much in pain for the rest of your life. I have the milder form of the condition so I am not in a 10+ pain every day but there are days when I do nothing and it flares up. Lately I have been ok with pain so maybe that is why my mood has shifted. But while I was walking home tonight, I got within the corner of my block and my foot acted up. It was killing me by the time I got home. It feels ok now that I have it up and I am laying down in bed. Thank god for laptops.

Not only do medical professionals deny that you have damage, but they also forget when you remind them the next appointment. I go through this every month I see my primary care doctor. It is like I am seeing him for the first time for my ankle pain, every single month! I get so frustrated. And now he thinks he found the cure by having a cortisone injection. I don’t want an injection. I don’t believe in them and I believe they can cause more harm than good, especially to joints. Plus, it isn’t an exact science. There is only a 50/50 chance it will work. Why should I go through the pain of having needles stuck in me for a 50/50 chance? No thank you! I don’t like those odds. Just like I didn’t like them for my back problem. Sometimes it works for people, but with my luck, I will be the 50% that it won’t work. And I am NOT going to be the one to say yea I will have it done JUST to have it done. Again, No Thank you! My body, my rules. I am not going to have anyone dictate what should be done with it. Pain medication is working for me so why not stick with that? I know that eventually the pain meds will stop working for me or I will have a dependence on them but as long as my doctor prescribes them, my life is manageable. And isn’t that the important thing?

thinking of my future is so not me

by Midnight Demon, posted in blogging, chronic physical pain, depression, mood disorders, psychache, suicide, suicide attempt

You know, I never really thought ahead with time before. I found that if I did it overwhelmed me too much so I always stuck with today or the hour or sometimes the minute because I had to. But now with this book that is turning into my baby, I am finding myself looking forward to the future more. Totally a weird sensation. I am not saying this makes me less depressed. It makes me a little less suicidal or have suicidal thoughts that float more rather than linger.

Today I have been in a weird space. I had a good session with my therapist and for some reason it put me in a good mood. Now I am wondering if I am hypomanic because I am in a good mood and have been up since 5. Things with the hypomania can spiral out of control quickly so if I am not my usual pessimistic self I tend to worry.

My writing friend said that I should write about this weird sensation but I am finding it difficult to because it is so not like me to think about the future. Usually my future is pitch black. I don’t have one. I know everyone does, but for a LONG time I just didn’t. Thinking about the future brought worry and anxiety. I had to get through today first and that was always difficult enough so I stopped thinking about future things. I still think that I can get my degree and my doctorate and be the therapist that I want to be. I know that I don’t want to be old and gray though, too. I have Alzheimer’s on both sides of my family so I know there is a good chance that I might get it. I already am having trouble with memory. I often write things and I forget that I write them. I don’t know if it is the dark side or just another part of me that was in the moment and I had these ideas. I am sure when I look back on this post, I am going to be like WTF, I wrote this?? That is so unlike me! And it is and that is what is weird.

My friend also thought that I don’t reward myself because of my suicidality. I have been suicidal for so long that I don’t think I can look past a month at a time without fearing losing my life. It’s like I am a Klingon and wake up every morning asking is this the day I am going to die? People don’t understand this. I know my family would be watching me like a hawk if they had any clue just how suicidal I have been the past few months. And the past two days I have felt like I have been in an alternate reality or something because thinking of my future is so not me. But this book that I am writing and sort of slaving over has given me a different perspective. I want to see this book published. I want to see this book successful. If I sell 100 copies, I will be happy, least for a little while. But I didn’t go on disability to be a successful writer. The bad stuff is still under the surface. I was re-reading “Touched with Fire” and came across a quote from Hugo Wolf “I appear at times merry and in good heart, talk too, before others quite reasonably and it looks as if I felt, too. God knows how well within my skin, yet the soul maintains its deathly sleep and the heart bleeds from a thousand wounds”. This is so true of me. I appear to be merry, cheerful, happy to the outside world but inside I am tormented and my heart bleeds. Nothing can stop the bleeding. I thought that working on this book would help the ache, and it has to some degree but it is still there. I might not be feeling it 100% of the time, all the time, but it is still there. I can’t deny it anymore than I can deny my foot pain that also is my nemesis. I am my own worst enemy. But today I can say that I am more a friend.

I’m an idiot

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

I started writing a paper for today’s blog but I kept on getting distracted. I will have it for you probably tomorrow when I am more clearheaded.

I finally edited more than 100 pages for my book today. I am past page 100 so I only have about 60 more pages to go. Then I can go to the editor and see what she can do. I have to say that I am taking out more than I am putting in. This is going to be a short book. But I still have the intro and ending to do so maybe that will add some pages. I got some good news…the editor can take me earlier than I thought! I could have this baby done by March instead of later than that! I am excited. I just emailed her to see what her status was and if she is still interested in working with me. I just have to work out a payment plan or saving the money. I really want this to work and I am not the greatest at saving money. But I think I have worked out a plan. I just hope I don’t have to borrow money from my mother. That will suck because I don’t think she knows I am writing this book and I don’t want her to read it. She never really supports me like my sisters do. I don’t think she would approve. Granted I have kept talking about my family to a minimum.

My back is not doing well today. I was looking for the article for the paper I am writing and tweaked my back because of bending down and then my mother wanted help with her new “toy”: a hard floors cleaner. My back is so not happy with me right now. But I have meds to take care of it and some stretching to do later should it act up. It definitely didn’t like me kneading the muscles with my knuckles so I know it is angry. Plus the weather is not helping me. Fricken cold and rainy today. It was supposed to “warm up” but it never did. I think there is a possibility of snow if the temp continues to drop. FUN! I am not going out until Monday anyways. But I need some fricken half and half. I cannot believe I fricken placed an online order for Stop and Shop and forgot half and half for coffee. I am an idiot!