Tag: CES

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?

Shouldn’t have gone out today

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

Shouldn’t have gone out today

Today is a CES day that I should have listened to my body instead I gave into my coffee needs. What does a CES day entail, well, when it involves the bowels, you stay home so you don’t shit yourself. And today was one of those days. I thought after going twice already I would be ok. Wouldn’t you know that the third time was the trick?? I was not even a block from my house when my bowels erupted. I was hoping to make it and I failed. I feel humiliated and disgusted with myself. It’s not every day that this happens. And it was more than just sharting (farting and shitting at the same time). I didn’t even fart, which to me was the worse of it. Then I could say that it was more than a fart but not this time. I soiled myself and I felt degraded like I do every time this happens. I was having a good day and now I just want to die from the humiliation I feel. Worse part is that I can’t even share this with anyone but myself and therapist and maybe my support group.

As I was in the bathroom, I decided I needed a shower. I had to. So I asked my mother to bring me a towel. She saw that I didn’t have underwear and figured I had messed myself as I was crapping my bowels out. She didn’t say anything. I don’t know if I was relieved or angry. But at least I didn’t have to explain myself. I think that horror would have really brought out the cutting urges. I stood longer in the shower than I probably should but didn’t care. I know my ankle is going to thank me later for this indiscretion.

I am listening to David Nail because that is what kind of mood I am in. He sings sad songs and it resonates with me. I need that kind of soothing that his voice brings. I think he is the only male artist that touches me this way.

I’m waiting to hear back from my therapist. Hope she calls soon.

nerve pain sucks

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

I woke up this morning and it felt like my little toe on my nerve damaged foot was cutting into my other toe next to it. It was really hurting but I just cut the nail so I knew it couldn’t be the cause. I was feeling kind of crummy and decided to shave my goatie off as it was annoying me and then take a shower. Whatever was causing my toe to hurt, was worse when my foot hit the water. As much as the shower felt good to the rest of my body, my toe hates me now. I asked my mother to look at the toe as I can’t bend down to see it nor have the agility to look at the stupid thing thanks to four back surgeries. She said that it looks like I have a blister forming or a corn. Great. Now I just have to wait and see what forms and what kind of pain I will be in over the next couple of days.

I hate having nerve damage. My toes are extremely sensitive because of the after effects due to Cauda Equina Syndrome. I got this syndrome more than ten years ago and I am still dealing with it. I hate waking up in pain or staying up in pain almost every single night. The doctors have nothing to do for me. I just take pain meds and hope for the best.

I really am tired of dealing with the nerve pain. Everything intensifies when I try to touch my toes. Cutting my toenails are the worse. I have to wait till the nerve pain is down to a minimum in order to get a hold of my foot to do the deed.

This leaves me very depressed. I miss my old self where I could do the things normal people take for granted. Like taking a long hot shower, taking a long walk, or just standing for more than ten minutes. I have since my original diagnosis have another painful diagnosis of CRPS, Complex Regional Pain Syndrome. This is fun (said with severe sarcasm). My toes and foot become as cold as ice and then when they warm up, I am in such severe pain all I can do is think about death.
Not only is physical pain exhausting it drags you down mentally. You feel like you are a loser because you can no longer do the things you once were able to do.

I hope my pain is not going to be exhausting tonight. I am hoping to catch a nap now as I am overcome with exhaustion just from taking a shower. I hate when that happens.

distress intolerance

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

Tolerating distress

I have been in a bad mood for the past hour. I have been in wicked bad pain and it has me thinking of ending my life once again. It is after midnight my time and there is no one that I can really call that will really understand what it is I am going through. I tried reaching out to a few people but as it is a late hour, I got no where.

Then I thought about all the DBT bullshit that I have been through and thought I am doing this wrong. What if I am supposed to be feeling the distress as much as it is intolerateable? I don’t know if that is a word but it is the closest thing that I can think of to describe what I am feeling. The thinking is that if you tolerate the feelings you are better off. I am not sure how. Feeling this way sucks and all I want to do is get rid of it. I mean I am feeling this way only because my foot is killing me and there is nothing I can do except wait for the pain medication to kick in and give me some relief. Listening to my favorite playlist is helping me. I listened to Laura Branigan and her voice always soothes me. I thought about writing in my journal but I am not up to putting pen to paper just yet.

My AAS blog was just published and it started off with today I am in distress because I wanted to kill myself. Why am I still alive when I want so badly to be dead. I just can’t go through with it and it is killing me, being alive, and suffering so much. I know that if I were a dog or cat, I would have been let down already. Funny how we are more humane to animals than we are to humans. The reasons are many and I won’t get into it because I am just not sure it will help me calm down. Anytime I talk about hurting myself I get riled up. And when you throw in that humans suffer because it is, well, expected, it just pisses me off. Would you expect a person dying of cancer to suffer?? Or Parkinson’s disease or any other terminal illness? That is what irks me so much, I have a non-terminal illness and am expected to suffer and go about my life like it is not weighing me down. I hate being like this. I cannot tolerate it. So the hell with the distress intolerance bullshit. It is not helping me just making me wish that I was dead all the more.