Category: CES

flashbacks and memory lane

by Midnight Demon, posted in cauda equina syndrome, CES, depression, medical, psychosis

Yesterday’s blog still has me reeling. For some reason I still feel like the world’s biggest jerk and I don’t know why. I think it just could be the depression coupled in with the voices. I keep on getting psychotic breaks despite being on medication but this week is my anniversary of my first CES diagnosis. Last night I was having flashbacks. Every time I closed my eyes, I was in a hospital bed. Being in pain last night didn’t help. I am trying to cope with this but it is just so hard to deal with all the time because CES affects everything I do. It’s like no matter what, there is a reminder. Like yesterday I was drinking fluids because my urine has been dark the last couple of days, indicating I was dehydrated. Well, I drank and drank only to leak and leak. Then I had to have a number two and almost didn’t make it to the bathroom in time. People think that I am doing fine because I am not walking around with my walker anymore but I am not. I still have nerve damage to sensitive areas, areas that are not part of the normal conversation. Sure we can talk about walking and standing and shit like that, but we hardly ever talk about bathroom stuff. Only a few friends and family members know that I have this problem. Granted it is not as severe as some one else with CES but that doesn’t mean I have CES any less.

The depression I know will fade one of these days, maybe when baseball returns next month. I just know I am stressed out over this book. I am reading it and wondering if I can truly put out the dirty laundry more so than my blog, because once it is out there, I can’t take it back. Having the flashbacks last night made me realize that I still am never going to get over this. Every year there is some reminder and today my scar is itching. I remember after surgery how nasty it felt to move the muscles around because they weren’t together anymore. I remember not feeling “whole” anymore because I had stitches in my back and pieces of disc taken out of me. You never know what that is like until you go through it. Sure people have surgery all the time to take the bad stuff out of them that is causing them disease but they hardly have to face it again and again. And I got CES twice. Lucky me. I have had four back surgeries. The first two was done thirteen years ago. The first was to remove the disc that was causing my legs not to move properly. The second was to remove the infection that happened two weeks later. I had a nice staph infection and had to be on strong antibiotics. These antibiotics almost killed my kidneys and liver. I went into kidney failure and they weren’t sure if I needed dialysis or not. It was a wait and see game. Luckily, after they stopped one of the antibiotics, my kidney function tests came down, albeit slowly. It took almost two months for me to have normal kidney function tests after I stopped the antibiotics. I also was very weak as my blood count got really low. To say that I was anemic would be an understatement. I was told I might need a transfusion if my count got any lower. I didn’t want a transfusion as I always heard stories about things that happen, like a transfusion reaction where you reject the blood you are given. I was scared. And I was alone. It took a few nurses and several family members just to get me to consent to the second surgery. I wanted the infection to kill me. But I am glad I got it because the pus pocket was close to bursting and if the stuff got on my nerves, I would really be in bad shape.

Memories such as these keep popping into my mind. I can remember stuff like this but yet I can’t remember if I had breakfast or not. The brain is a funny thing. I guess it just remembers what it wants to. I just wish it would happen during the day and not at night when I want to sleep! But the depression remembers these things. I know that if I was in a better mind set back then, I probably would have been over this a long time ago. But it’s important to tell people that those with back pain can get CES if they are not careful. All it takes is a herniated disc to rupture and boom, you will have this dreaded condition. I just hope that if this happens to you, you get the care you need within 24-48 hours after onset. Or things might be permanent. I was lucky that my CES diagnosis was caught early to reverse the nerve damage that was preventing me from walking. I can walk without a limp but I still need an AFO (ankle foot orthotic) because my foot is still weak, even after all this time. And no matter how many times I have been to physical therapy and there have been quite a lot, I still can’t regain the strength I lost. I am at 90% recovery. The bladder and bowels were after effects. And most likely caused by the second surgery/diagnosis that was at a different level. That happened five years after my first. I was a lot calmer about the second go round than I was the first. What truly helped me was finding a support group (www.caudaequina.org). Knowing that I wasn’t alone and knowing what to expect truly helped me recover and keep my spirits up.

Is suicide ever justifiable?

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

Is suicide ever justifiable?

I read an article about this today and it has me thinking. Would my suicide be justifiable? I am living in chronic physical pain every day that is sometimes helped by opioid medication but yet is not at times. I suffer from depression but no anti-depressant seems to help me. I am on a mood stabilizer that helps with the ups and downs but doesn’t help with the lows that I get. So would my death be justifiable because I have exhausted every available method of treatment for both conditions? I think I have. I think it is time that suicide should be given more thought. It isn’t wrong. It isn’t selfish. Sure there would be people that would miss me but if they know that I have tried everything and it all failed, I think they would rather have me dead than suffer. I cannot not go on suffering like this anymore. Everyday it is a battle. Which pain will cause me more suffering, mental or physical and lately physical has been winning. I am losing the battle and there is no one I can talk to about this. Even if there was someone to talk to about this, they wouldn’t understand. They would want me to try harder but I am tired. I am so very tired of fighting this losing battle I cannot win. So I have been making up my own rules. I have been dosing myself without regard to time tables. If I hurt I take something no matter the hour. But my mental pain is a whole another story.

This pain creeps on your and stays with you like a parasite. It grows on your fears and your doubts and your sorrow like no tomorrow. And nothing eases this hurt. I am frustrated by the psychiatric community that has not found a cure for this kind of ache. This all encompassing ache that is deep down in the soul and blacks out all the good in the world and in your heart. I was free from it at one point but it has recaptured me. Whether it is because the physical pain has gotten to be too much I do not know. I just know it hurts to breathe. It hurts to think. It hurts to be. And I don’t want to be anymore.

They say that if you are suicidal you are not in your right mind. That if you give yourself time, you will not think about it in a week or two. I have thought of killing myself for too long. I want this suffering to end. I am a lowly human being that deserves to die. I have done many things wrongs in my life. But I still feel that I am in my rational mind. In ancient times, if the citizen asked the government three times to die the wish was granted on the third attempt. Why can we have the same kind of rules now? I have asked my treaters if I should die and yet they want me to continue to live in this painful existence. If I was suffering from cancer, would that change their mind? No one is guaranteed a tomorrow. I am just asking that I be put to death to end my suffering because there is no cure for my ailments.

night time blog

by Midnight Demon, posted in blogging, cauda equina syndrome, CES, depression

Night time blog

I did nothing for my birthday. I stayed home listening to the rain fall and watched TV. My family came over and we had some laughs and some cake. I didn’t shower like I wanted to. I fell down the stairs and it kind of wiped out anything else that I was going to do. I am hurting and it’s worse now standing for even a few minutes. I will probably shower tomorrow.

I got a lot of presents that were just for my birthday, not Christmas like it usually goes. My Aunt gave me a Euro in a necklace that nearly choked me because the chain was too small. I like it but the chain didn’t fit right and was aggravating me the whole time I was wearing it. I usually to not wear necklaces. I will wear my Claddaugh ring, but that is only because I lost my high and junior high rings. Our middle school gave out rings because most of the graduates never finish high school. My starting freshman year was about 250 kids. Only about 150 graduated. Granted some had transferred to other schools (like my sister and a couple of my friends moved out of town) but the majority either dropped out because it was too hard or because they got pregnant. One of my friends didn’t graduate because she just couldn’t keep up with school work.

I edited my book for hopefully the last time before the editor sees it. I put in the indents in the paragraphs. I was reading it as I was going along, well, maybe not reading, skimming. And it still gives me chills on certain parts of the book. I know that part of it is because the book is so personal. I talk about every aspect of my life that has to do with my suicidality and the road to seeing therapists and psychiatrists. It was not an easy book to write. I do hope that someone can relate to some of the things I write in it. I know the title alone is a paragraph but I had to get CES into the title. There are no other books out there that deal with Cauda Equina Syndrome, not in the personal sense. People need to know about this syndrome because not all back pain is the same. And back pain can progress to CES if not taken cared of properly or if further injury makes it worse. I try to cover all aspects of getting CES in the book but I am not everyone. What happened to me, might not happen the same way to another person, even if we both had the same disc problem. CES is tricky to understand and most doctors do not know how to treat it, if they are able to recognize it in the first place. And this goes to radiologists too because they are the ones that interpret your MRI’s. They call something wrong because they haven’t seen it and you are fucked.

So this is how my day was. Nothing interesting. Except for the fall down a few steps. OUCH!

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.