Tag: complex regional pain syndrome

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?

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.

rambling 58

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

Literally spent the day in bed. I was so tired that I couldn’t be bothered getting out. I woke up with pain again, took my pain meds, and it was lights out. My mother woke me up to say dinner was ready and I just had it now. I hate it when I have days like today where all I want to do is stay and bed and do it. Tomorrow I have to get some editing done as I didn’t get any done today. I didn’t even so much as read. I played on the computer for a little while this morning after having breakfast and then it was lights out. I hope this doesn’t disrupt my sleeping pattern. I was really getting some sleep with me adding the remeron to my regimen. If I am able to get some good sleep tonight, I will ask my pdoc to write a script for it so I can get some decent sleep. I find that I don’t wake up in the middle of the night like I did without taking it.

My biggest thing that I had to do today was take a shower, which I still have not done yet. Last time I showered was I think Sunday. So yes, I am pretty gross right now and smell so rosey, not. I was trying to see if my family members would notice if I didn’t shower or anything and no one did. I wasn’t expecting them to.

I started to re-read Touched with Fire by Kay Redfield Jamison. I finally found the entry I have been looking for regarding Edgar Allan Poe’s letter. I have it practically memorized. It is a good account of what it is like living with a torturous depression such as lucky me, I have. And what makes me all the more special is there isn’t a medication I can take to control all the symptoms. It sucks. I don’t know why I bother taking my mood stabilizer sometimes because I still feel like shit. But I know that if I am feeling like shit now and I stop taking it, I am going to be beyond shit.

One of the other books that I dug out from my stash was Paul Quinnet’s book Suicide the Forever Decision. I have not read that book in years. I have to say it is one of the well known books and it is free online in PDF form if you want it here. When I met him last year at the AAS conference, BOY is he fricken tall. I am like 5 feet tall. He is like at least 6 feet 2 inches. The picture that someone took for me is unreal. It looks like I am next to a giant. If I was good with media, I would place the pic in this blog but I don’t know how to do that. Anyways, when I was talking with him, he was trying to get the book on kindle for free. It’s not yet, but it is a low $2.99 (USD). But go on the website and get yourself a free copy of it. I printed it out and have it in a binder because I forgot where my copy was. It’s not the original that I had because the spine is fairly new. My copy would have been a dead spine. I have read that book so often. It really helped me when I was a teenager and it still helps me today.

You can say that I didn’t have time for suicidal thoughts today. I was too sleepy and drugged to be suicidal. I wish my pain was gone so that I didn’t have to think about what lies ahead for me with it.

The next few months are going to be hard for me financially. I am going to try and save some money so that I can pay the editor to edit my book. Thing is, I have to wait until fricken March for her to take my book. I don’t know if I can wait that long to have my book just sitting on a hard drive. I do hope by then I can have some people read it and tell me it is a good book or if changes need to be made. I might have to ask the people in my support group to help. I just need one or two or three people to look the book over and see if there are things that I missed or don’t make sense. But these people would be someone I have to trust and be able to work on my book without backing out of the commitment. And I know some of the member deal with pain all the time and would really be a challenge for them to read a book in a selected time frame. But I still have lots to do before I get there because I still have no table of contents or introductory passage or a solid ending. The ending that I had, I had to take out because it wasn’t kosher (long story).

I hope I am not getting sick. My throat has been hurting me for most of the day. I hope it isn’t that same virus that I got a few months ago. That was horrible. I couldn’t swallow for almost two weeks. And I really don’t want to be sick for Thanksgiving.

dealing with ignorance

by Midnight Demon, posted in blogging, chronic physical pain

Today I posted a status on Facebook about someone who wanted me to find religion as a way of coping with my pain. I found it offensive as I am not a religious person. I then get a response to the status that I should grow up and deal with the pain like this person does. What. The. Fuck. How dare you tell me to just suck it up and move on. Don’t you think I have tried that method. And here is news for you…it doesn’t work! I am still in pain regardless. If I don’t take my pain meds I am screwed, royally. And that was what started all of this. Me ranting about my doctor and him telling me I should lose weight. I then commented on how I should just starve myself this way I would lose the weight faster. I then got a response saying that my family would not want me to whither away and die like that. Again…What,the,fuck!! So I am done with Facebook because I should grow up and I am done with my CESSG support group because I should join a religion and not whither away and die. And I have no idea if any of this makes sense!! I seek support and when I want it I don’t get it and it is so frustrating. Granted there are a few exceptions. There are people that actually get that I have pain and don’t want to see me die. But then there are others that I just want to strangle and be like WTF!!!! But the growing up piece is the best advice I have heard. Shows you how ignorant people can be regarding pain. I understand this person suffers from pain too but come on. Grow up? Really? Is that the same as cheer up things could be worse with my depression? Oh I am sure she would shit her pants if she read my nothing man blog. I am just so frustrated that I am taking it out on the one place that I can…my blog. It is the only safe haven that I have where I am not criticized for what I write. Think I am a little tired of this crap. I am tired of feeling like a lump on the log. I set out to do nothing today and I wrote two blogs. Now it is not even seven o’clock and I want to go to bed. Dealing with pain is exhausting. So is dealing with ignorance.