Painsomnia and Midnight Demon Friday 22 June 18

I had started a blog on my laptop to publish yesterday but my brain kept getting foggy and couldn’t focus. I knew if I forced myself to write, it would come out crappy.

Now it is after 2 am. I can’t sleep. Midnight Demon is out. Has been since 10 but had no writing urges. I’m just writing now because I felt like it. I feel suicidal. Been planning for months and now it is almost time. I’m wondering where the weeks went. I haven’t done much other than look over my will. My pension is still wherever it is with my employer. I have emailed my psych that my death is inevitable. I asked her to let me go.

Pain has been decreased by 50% since my new longer acting pain med was started last week. But it does nothing for flares. I am not in a flare. Just pain that is left over from the meds. It doesn’t take all the pain away. Nothing will do that. But this pain is what is keeping me up. That and the thoughts of ending my life. It is like a monkey on my back. It goes away for a while and then comes back full force.

It is a familiar feeling. A part of me knows it will pass. Another parts truly believes this will be the end. I am tired of fighting this. I had made my decision 3 months ago. Now the 3 months is almost up. I extended the date due to circumstances beyond my control. Next week I will check out the location. I hope it will be suitable. I am still afraid I won’t go through with it. My psych might intervene. I don’t know if I will end up back in the hospital. I told her it was useless.

My hope level has been fluctuating a lot. My friend reminded me I’ve been in rough patches before and got through them. I didn’t tell her this was it. I feel so stupid. One of the suicidologists I know that is the president of AAS did a study on the effects of a suicide. In the study she found that >132 people are affected. If that holds true, I will have ~400 or more. And that just includes my online/high school/ co workers friends. Doesn’t include my humungous family.

I feel guilty about this. Today she posted saying that it was a reminder to suicidal persons as they often feel no one care or that no one will miss them. Makes me mad. I don’t want to cause pain to others yet why should I go on in torment of my CRPS and depression? I feel it is a guilt trip. A huge one at that. I stuff those feelings when I am deeply suicidal. Then when it lowers or I look at the people I love, I wonder how could I do this to them? I am in agony over this. It is truly hurting me. Call it ambilvalence. Call it selfishness (please don’t as that is NOT what it is but i don’t know another word). I just am so conflicted as to what to do. I can’t stuff them. I want to die. I need to die. My time is coming. Question is, to be or not to be.

Feeling shitty and can’t sleep

It is almost 2330. I had a burger later and then got sleepy. I’ve been trying to sleep for an hour but my damn foot keeps acting up. Bottom of my foot has this pressure pain. I am getting zaps in the side of my foot near my toes. My metatarsals are being ripped apart.

Then my brain is working none stop. For some reason, the source (evil demon from Charmed) keeps popping in my head. I will be talking to someone and then their eyes change to black and they want to envelope me. I don’t get it. I don’t usually have nightmares, not since I was a kid.

Pain is driving up my suicidality. I have been thinking about canceling my therapy appt for Monday. But I want to see him. I got 3 appts this week. I was going to have 4 but I am going to cancel my eye appt. I’ll just reschedule it. I have been trying to do the exercises my PT gave me but they are different than the ones we did when I saw her. I can do the one for my right foot but my ankle is too angry to try to do. I have no idea if having my knees up and doing one exercise is going to upset my foot/ankle. It was alright with the AFO on but I don’t wear it around the house. The. There is one exercise that sounds more like part of my notes than an exercise. Have no idea what that is about.

I think I am going to go back to regular pillows and not use the body pillow I have. It is annoying me. I also need to change my sheets but I have accumulated a bunch of shit on my bed that will take a few days to get off. I started clearing off some stuff. I have a gazillion pharmacy papers from my meds. I tried using the privacy stamp on it but it didn’t work. So it is back to the “to be shredded” pile, which is overflowing at this point.

Last night I was in a suicidal mood and sent my psychiatrist an email about things running through my head. I was expecting a phone call today but nothing and no reply. I forgot she was on vacation last week so that was why she didn’t read the article and blog I sent her. I really wanted her to read the article. But because she didn’t, I couldn’t talk to her about what was on my mind. She said she will get to it. I hope so.

Foot is hurting really bad. I took the breakthrough med a little while ago. I think a placebo would have worked better. I also took some more fiber pills. I went a little bit today but that was all. I am expecting a colon blow. But it just feels stuck. I feel really uncomfortable. Usually one will work and I am taking 3 different things. I don’t think the senna works for me anymore. I hope i go tomorrow.

Colon blow and other Cauda Equina Syndrome “fun” things

Colon blow and other Cauda Equina Syndrome “fun” things

I didn’t write my blog yesterday. I only got a few hours sleep due to pain and worrying that I would sleep through my alarm. I went to my psych appointment and she put me on a new antidepressant that is out. I came home and had a severe flare. My pain was through the roof. I was supposed to go to the ball game but it wasn’t happening. After my mother made dinner, I took about an hour and half nap when my phone’s med alarm went off. I took my night meds and got so sick. I haven’t moved my bowels all week so been feeling ill and I think the new med just made me nauseous. I thought I was going to hurl. I took my Zofran and laid still. I also took some Mylanta because I had gas really bad. When I didn’t feel like puking anymore, I took some fiber to help my bowels move along but a few hours later, nothing happened.

I decided to try some Miralax to help move things. I was hurting so bad and I swear my stool was moving into my small intestine rather than move along to my colon. I was still passing gas but nothing else. I went to Walgreens and bought some and a Gatorade to take it with. Having suffered from Cauda Equina Syndrome (CES), getting constipated is a HUGE thing. There is a varied range of people’s degree of injury to their bowel nerves. Some don’t feel themselves go so become incontinent and being constipate helps to prevent accidents. Some have a designated shit day where they take laxatives and spend the day on the can to relieve themselves. Taking medication for pain can be constipating. I have no feeling for soft or loose stool so can pass them with gas if I am not mindful of it. Never trust a fart is a common saying among those with CES.

I usually have hard stool and can go with senna. Lately, because of my flares and needing more pain meds, it hasn’t been working. Usually fiber helps me move along and I try not to have plans the following day so I can go to the bathroom in the privacy of my own bathroom. I hate using a public restroom when out because I don’t have the mobility to reach my behind like I used to due to my back surgeries. When the fiber and senna do not work, I take Miralax hence why I went to Walgreens today. I have been having a ton of flatulence which I cannot trust. I was able to have a few movements after taking the Miralax but now I am having what is known as colon blow where all you do is go to the bathroom. Since I can’t trust a fart, every time I get the sensation of urges (I can’t tell if it is a stool or gas urge), I run to the bathroom. For the past hour, I just have been shitting little turds, which is annoying me as the stool is messy. My bottom is so irritated and I have to use the incontinence spray that you don’t have to rinse to soothe it.

The most undignified thing is, because I can’t trust a fart and I have a lot of gas, I am now wearing a diaper to prevent my underwear from being soiled. I already had one accident today that required a shower. With the comfort of the diaper, I can let loose and if some stool comes out, I don’t have to freak out and be constantly changing my underwear. I have taken some stomach stuff for gas so I hope it helps. I don’t want to take Imodium because I don’t have loose stool even though I know it would help the gas part.

Another lovely “perk” is nerve pain after moving hard stools. This rectal pain can drive people who have never been suicidal to become suicidal. Nothing is worse than a pain in the ass that no pain meds can touch. Sometimes the pain can last a few minutes or hours or days. It sucks. No doctor knows why, even the colon experts.

The worst part of this day from hell, is I have been going up and down the stairs all day as the bathroom is downstairs from my bedroom. I hope it doesn’t cause another flare. Yesterday’s flare is still giving me nightmares. My ankle has CRPS (complex regional pain syndrome). It doesn’t like movement. I am sure I will flare later tonight, despite taking a nap. Rest doesn’t always help my pain like some pain conditions. I hate the unpredictability that CRPS brings. I wish there was a way to control it but there isn’t. I long for the days when my pain was driven by activities during the day. Now, it doesn’t matter. I can be at home all day and I will hurt. I can go out a few hours to have a cup of coffee and write for a bit only to hurt later in the night. It is awful. I hate it. It has taken away all the things I love. I feel beaten. And then I will have days like today where I am crapping my pants. It’s too much. I just always hope that tomorrow will be a little less painful because that is all I can do.

Tired of pain taking away things I love

Yesterday, I had a bad flare. I tried writing but after around 100 words, I was exhausted and couldn’t continue. I had therapy yesterday and for some reason my legs were really sore so walking was difficult. I thought it would get better as the day went on and I did my things but it only wore me out with each step I took.

I was in agony most of the night. I didn’t get to sleep till 4am. I kind of lost track of time as I was trying to find a tea kettle. I had made a cup of tea and the kettle we have is all rusted on the bottom, making things taste different. I told my mother and she refused to change the kettle and there is no way of getting the rust out.

I made coffee using spring water and saucepan. Coffee came out perfect. Then we had a t storm and I got a migraine with severe nausea. I still feel sick to my stomach. I didn’t think I was going to write today as I really am tired. I don’t know if my writing means anything to anyone. I’ve just been writing for me, because I like doing it. But after yesterday, it was the first time in over a year and a half that I didn’t write. I thought I might be able to write later but then it was after midnight so I just posted the pic of the pup. I might do that on days I am not up to writing more than a paragraph.

My writing means a lot to me. I have been pushing through tough days because I didn’t want to give in to chronic pain. Yesterday was the worst in a very long time. I usually am able to write how bad things are and yesterday, words just couldn’t come to me. I kept staring at the screen cursor wondering what to write next. My head just was filled with blankness.

Today was a little better. I slept most of the day, despite my med alarm going off to remind me to take my pain meds. It is really hot in my room though the temps have cooled off. I want to open the window but I still haven’t put in the screen. Maybe I will have my bro in law put in the AC and the screen. It kind of early but at least when it is humid, I can cool my room down. I cannot tolerate heat. As hot as it is in my room I have to keep my sheet covering my foot because the ceiling fan air hurts me.

If you are a daily reader, please like or comment if you can. I’d like to get an idea of who is reading. My stats aren’t really a good indication. Thanks and I am sorry for not posting yesterday.