Tag: chronic pain

Rant of Doctors about CES

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

A rant on doctors (CES)

You are diagnosed with Cauda Equina Syndrome. A misunderstood syndrome that is a medical emergency. Yet the doctors never provide adequate after care. They think that once the surgery is done, you should be healed. They don’t tell you it could be up to 2 years or more before recovery is seen. Meanwhile, you become an infant. You have no bowel or bladder sensation. Are given catheters and told to do your own bowel program. I have tried this and has taken me 13 years to figure out what to make me go and what doesn’t. I was fortunate that I didn’t have to use catheters but I know others that do. What really pisses me off is that there is no help dealing with this syndrome mentally. It shatters you to the core. The pain that is dealt with is intolerable. The burning, the zaps, the throbbing, the stabbing. It never ends. You might get relief for a few hours but most of the time you have to learn to tolerate the pain. You want to give up and when you tell someone this, you are thought of as crazy. People don’t understand the mental anguish chronic pain has on you. I am feel so bad for those that didn’t have the help that I did while I was in the hospital. I was on suicide watch a few times but I got through it. I still have strong suicidal feelings because I just cannot tolerate pain any longer. But I am still here, despite these feelings.

Doctors don’t know everything. You may have to see several different specialists to deal with CES. I would strongly recommend finding a psychologist or therapist in your area to help deal with the debilitating pain, disability, and loss of self. Whatever you were before CES, it is now gone. You will never go back to that life. I will never be able to walk a 20 mile walk a thon because I can barely walk around the block without severe pain. As tough as it is, you must get used to this new life. There are no doctors that specialize in CES. Some have never even heard about it and if you look it up in a textbook, I am sure it is just a small paragraph. That is what makes this syndrome so damn frustrating. You have to see a neurologist if you want the best care. A GP or internist is not going to be helpful. Finding someone to listen is also key, though it may be hard to find. Don’t give up looking. They are out there! The weird thing is, as I was in the ER unable to walk, surrounded by neurologist residents and neurosurgical residents, not one of them told me that I had CES. It was my psychiatrist that told! I paged her at 4 in the morning to talk to her and get her opinion on what to do next. I needed to hear her voice because I knew she knew what I had. I have been lucky that both of my CES surgeries happened in the early stages and within the timeframe. Otherwise, I doubt that I would be writing how I recovered. It took a long time to get use of my legs again. I went from walker to cane to AFO to nothing. It didn’t happen overnight. It took months of rehab and perseverance. If I can get through the pain, you can too.

delusions continue

by Midnight Demon, posted in Bipolar Disorder, psychosis

I had therapy today. I read her what I wrote on Twitter and to my psychiatrist. I heard back from my psychiatrist about what I have written. Here is an excerpt of what I wrote on twitter:

having delusions are fun. I think I can write a story if they keep up. Or maybe I’ll just make it up as I go along. Fiction has no rules. Seth, who was killed by bratec, is now living in ISIS. He is now big Ben and is being controlled by the G’oauld. Allah is their god but big Ben thinks he is their god and everyone must bow to him. See it makes an interesting story. The G’oauld is a parasitic alien that lives at the base of big Ben’s neck. It gives Ben powers of mass destruction. That is all I will say. Voices are yelling at me to sleep and keep this info a secret. But it is all true. The G’oauld are going to take over earth. Just watch.

I just sent it to her. I don’t care anymore. These delusional are real to me. I am getting paranoid when I think about the destructiveness of the aliens so I try not to think about it. It really scares me. And the fact that no one knows about this. But then the aliens have been hidden for centuries in humans. My therapist thinks that I am caught in some kind of sci-fi fantasy of some sort. Whatever. I know this is real. My therapist was kind of in awe of my delusion. But she didn’t talk me out of it. Part of the agitation last night was because of pain hitting new levels, despite taking pain meds. All I could do was write and what came out was the delusion of my thoughts. But is it a delusion if you can’t reality test? No one can prove to me that I am wrong so therefore, I am right?

I am watching my niece. I think I have eaten practically anything that my sister has. I have had corned beef and cabbage, Hershey choc chips, corn bread, popcorn, and water. I am so full it’s not funny. And I had a bacon and cheese sandwich before I picked her up from school! Must be the meds that are making me hungry. I feel really bloated and sick so I don’t think I am going to have anything else tonight.

I just hope my psychiatrist doesn’t want me in the hospital. I told her they will plant stuff into me, which I think they will. They won’t understand the meanings of what I am saying.

The weather has been weird today. This morning was raining, then it was sunny. Now it is windy and raining again. But it’s warm out so I am happy about that. Just weird that things got dark all of a sudden and the wind picked up. I want my sister to come home soon so I can lie down on my bed. I got a stomach ache. I shouldn’t have had so much corned beef but it was so good. My brother in law makes a good boiled dinner, though I wish he would cut the meat and cabbage up before boiling everything together. That was why I had a huge piece of meat. But oh well. Now I just want to put my feet up and relax, but mostly just put my feet up because they will hurt less later than they would be now.

Funny thing. I was reading something last night and found that the editing was terrible. I couldn’t believe that they published it with so many errors. For example, they had ” x, x, x and” with no comma after the third x. It was like that the whole thing that I read. It annoyed me so I stopped reading it. I am no grammar police but to see that in a published book was sad.

A quote

by Midnight Demon, posted in Bipolar Disorder, chronic physical pain, depression, mental illness

“Never kill yourself while you are suicidal. You can, if you must, think about suicide as much as your wishes and let the thoughts of suicide –the possibility that you could do it- carry you through the dark night. Night after night. Day after day, until the thoughts of self-destruction runs its course and a fresh view of your own frustrated needs comes into clearer form in your mind and you can, at last, pursue the realistic aspects, however dire, of your natural life”. –Edwin Shneidman, Suicidal Mind, p166

I came across this passage on the last page of the book. I found it meaningful because I have spent night after night, day after day, thinking about ending my life. I have even thought about ending my life when I wasn’t so depressed and hopeless, but I never felt the urgency to end it when I wasn’t in horrendous emotional pain, or physical pain as it has been the last few years. I posted this, during a chat last night. I guess you can say that I interrupted the chat. It wasn’t my intention. I forgot the chat was taking place during that time. I tried to participate in the rest of the chat but as usual, I didn’t. Yet a few of us had a discussion on the side about how we let our providers know if we are suicidal or not. My experience with my PCP is not to let on that I am suicidal, unless he asks me directly. I cannot bullshit my way out of a paper bag so I will answer honestly when asked a question. Most times, I get the third degree about my suicidal tendencies and my narcotic medication. He wants to make sure I am “safe” with it. What he doesn’t know, even though I have told him a million times, is I am more afraid of the Tylenol content than I am of the narcotic content. But I still get the drill of asking if I am safe with the medication. I really want to say that I have other plans that are more lethal but I don’t for fear of getting tossed in the psych ER.

I am feeling like a caged rat these days. I haven’t been able to get my coffee/latte at Starbucks in weeks because of the severe snow we have been getting. I thought I would be able to go out today but the buses are on a reduced schedule because of the holiday and still trying to get dug out of the snow. Plus, it’s a measly 1 degree out. So I am just staying in my room, again. I am listening to the radio today. Unfortunately, my favorite DJ is off today. We sometimes chat on Twitter.

I found out that my book is being sold on Ebay in the UK. I think it’s funny, but whatever gets my book sold, I am for. I am supposed to send out my book to reviewers, but because of my depleted funds and mail being disrupted due to the snow, I think I will wait until the end of the month. Hope by then, the storms will have gone away. Tomorrow and Wednesday we are expected to get more snow. It’s terrible. I don’t remember a winter this harsh. I just fear flooding when it all melts.

I guess today would be a good day to work on my short story. I will try and work on it after I write this blog. The nice thing about this story is that it’s new. I haven’t posted it on my blog and I don’t think I am going to. Unlike my “Darkness will Win” post, that is going to be published. I am working on collecting a few blogs and short stories together to make my second book. I just hope that formatting goes easier the second go round. The first time it was a nightmare. I literally had to go through all 150 pages to make sure they were formatted correctly on each page. And for the life of me, I could not get the acknowledgements page to be on its own. Drove me crazy! The first copy of the Kindle was all messed up. Luckily, only a few people bought it. I fixed it best I could but I still think there is a blank page in there somewhere.

I haven’t had much appetite the last few days. I don’t know why this is. I am depressed but I am not “that” depressed. At least the day time sleepiness is gone. My therapist is on vacation this week. It sucks having her away. My psychiatrist is still out with her broken hip. I just communicate with her via email. I sent her a couple of emails and got no response as usual. I wish she would acknowledge the damn thing so 1) I know she got it and 2) I get a little feedback. I just feel like I am roughing it on my own these days. I stopped taking my antidepressant because it stopped working. I wasn’t going to increase it without her being in the office. Plus it was causing me to keep the weight on as it increased my appetite. I haven’t noticed a big change in my mood since stopping it. I really don’t miss taking it. One less pill to take at night.

Three feet from the bureau

by Midnight Demon, posted in Chronic pain, chronic physical pain, depression, suicide attempt

Three feet from the bureau

In October of 2012, I was caught in another flare up. It was night time, well past business hours of doctors and therapists. Normally I am good at reaching out. I text my therapist. I write in my journal or blog to get through the episode. But this night was different. I snapped. I couldn’t bear any weight on my foot that night and it really made me feel like I couldn’t go on. I was so tired of feeling like an invalid. I wanted to die in an awful way. Problem was that I couldn’t get to my bureau three feet away to get the meds I needed to do me in. Any time I tried to move, I was in agony with horrible foot pain. I could barely move my foot out of the covers of my bed let alone stand long enough to shuffle to the bureau. I cried as there was nothing I could do but take what I had at my bedside. It wasn’t much but it was enough to make me unconscious and away to dreamland I went.

When I awoke the next morning, I was in a dreadful mood. I wondered if I had really done what I thought I did. I checked my pill box and it was empty. I checked the contents of my pain meds and it was close to empty. I couldn’t believe what I had done. But I survived it and am living to tell about it. How I woke up I don’t know. I felt ashamed of myself, not in surviving but of making an attempt and not seeking help. I had promised my doctors that if I felt like I did that night, I would call them. But no phone calls were made. I had a confidential suicide hotline to call but I didn’t. I had made suicide prevention part of my treatment plan but yet the crisis response plan went out the window that night. I didn’t implement any of it. I just took pill after pill until I passed out.

This scared me. I was no longer in pain yet who is to say that if this happened again I wouldn’t try to end my life again? Dealing with chronic pain is a beast. And so many times it doesn’t get a flag for suicide risk assessment. My better judgment wasn’t in gear that night. I not only wanted to end the pain, I wanted to end everything. I spend the next few days in a haze, and not from medication. I was scared to let my practitioners know what I had done. I finally broke down and told my therapist. It was very difficult admitting my attempt. I then told my psychiatrist and she shocked me by saying that if I wasn’t in pain, I wouldn’t have done what I did. And it’s true. Chronic pain changes you, not only physically but mentally as well. It took me a while to write about what I had done on my blog. After all three feet was the only thing stopping me from ending my life or attempting to. I’m still fearful about making another attempt while in the throws of another flare up. I keep a small portion of my meds by my bedside so they are not lethal. I was lucky I didn’t need medical intervention the next day. I still am not quite sure how many pills I took that night. And that also scares me because who is to say that the next time I won’t count them out.

Chronic pain is not something to underestimate. Hundreds try to end their life year after year because of physical pain. Most people see their doctors before an attempt is made. The question remains whether an assessment is made for either depression or suicidal thinking. My primary tries to assess my mental health but mostly just asks when my next appointment with my psychiatrist will be. It might be followed up by will I call him if I feel like taking an overdose of my pain medication. Yet he knows he is not the first person I will call. In my order of people to call: my psychiatrist, therapist, primary, then ER if I can’t get a hold of one of them.

That night, I didn’t call anyone. All of my safety plans went out of the window. All because I was overwhelmed by excruciating physical pain. I think if I could go back in time, I would have taken the time to breathe. And think more of self-preservation rather than self-destruction. I am more aware now of what to do but it’s not that easy when you are in the heat of the moment. A month ago I was again in excruciating pain for three days yet suicide was the furthest thing from my mind. I knew what to do to cope with the physical pain. And luckily that didn’t involve a bottle of pills. I felt the attack come on so treated my pain much earlier than I did in October. This helped to keep the suicide demons at bay. I texted my therapist, I emailed my primary that I was in excruciating pain. I also got in touch with my psychiatrist who help me to see there was a tomorrow. Doing these things didn’t make my physical pain hurt less but made my psychological pain bearable. It helped me to cope through this rough patch.

Being mindful about pain is how I get through bad flare ups. I have no control over these pain attacks. But I do have control over what I do with it. I learned my lesson from that October night.