Tag: chronic pain

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.

another shitty night of sleep

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

I had another shitty night of sleep. I was in pain for most of the night and then when I woke up this morning, I was in the same amount of pain. So I took some pain meds, made breakfast, and then went back to sleep. I didn’t wake back up til after 3. I still am tired but not in so much pain. It has quieted down some, though I don’t know for how long.

I just had dinner a little while ago. I swear I could go back to sleep but I know that if I do, the same pattern of sleeping is going to resume and I am not going to get anything done. I still have to put my edits into the word document file. That is going to take some doing. And when I do it, I am shutting off my fricken phone because I don’t want any distractions. Even as I am typing this, some text messages are coming in or alerts for Words with Friends. I don’t need them. Ok I am a little grumpy because I have not had a good sleep and I am tired. If it wasn’t so late, I would probably go to Walgreens, get my half and half, and then make me a cup of coffee. But it’s after 6 now and if I have coffee now, I am going to be up half the night. I should make myself a cup of tea. That will wake me up but not keep me up. I really need to go to the grocery store this week (after Thanksgiving) to get more tea and pick up my coffee for the Keurig. Now that I have edited more than 100 pages, I can get my coffee reward. It might sound strange but it’s the little goals that keep you going when you are working on a project.

Last night I emailed my writing partner and told her I was thinking of going to Amazon for publishing and what did she think of it. I haven’t heard back because we really haven’t talked about how to get my book published other than me writing it. And I will be damned if this thing just sits around while time goes by. More and more people are publishing their stories about suicide. I would like to be among them. I also told her about my worries about the first few months of this being successful and then nothing. I just hope this doesn’t end up making me lose my disability. I will be so upset because it took me so long to reach that point to admit being disabled and go for it. And then I will be flipping out because I don’t know what I will do for income. But on the other hand, if my book is really successful, then I don’t have to worry about it. But I know it’s not so there is that fear as well.

Might write another blog later. I can’t keep up with this one so I will stop here.

nothing man

by Midnight Demon, posted in blogging, depression, suicide, suicide attempt

“she loves him// she doesn’t want to leave this way// she needs him that’s why she’ll be back again”. Better Man, Pearl Jam

This is how therapy goes with me. I need it, she needs me.

****Warning might be triggering****

I was thinking about writing a story about my suicidal thoughts and I think I have it all set. Here goes:

He cuts the length of rope that needs, enough to cover the bed and his neck. He doesn’t know why they don’t sell a smaller rope size. 250 feet is really too long to do the deed for such a small space. All he needed was about 50 or so feet. If they sold it in bulk, he would have asked for that but the Home Depot didn’t. Somerville Lumber did. How he misses working in that store. He misses the people more than he did the regular customers that really kept the business alive.

He figures out the length and then carefully double knots everything so it stays in place. All attention to detail must be made. The biggest fear he has is that the bed will come with him as he hangs out the window. It is a cold day today. Maybe he should put on some heavier clothing, he wonders then laughs at the idea. He hopes God will forgive him as he take the final step out the window. Good-bye world he says, to himself. No one else can hear him. He struggles with the rope around his neck. He wants it off, it is strangling him. He feels like he is going to lose consciousness and finally he does. He just hangs there, lifeless. His task completed. His horror over.