Category: cauda equina syndrome

more thoughts on my blog

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

More thoughts on my blog

A reader emailed me and I thought about what she said. This is my blog and last time I checked, calling someone stupid wasn’t breaking any laws. So on this note, I have decided to keep my blog open, not password protected. If that monitor person wants to continue reading my blog, there is nothing I can do to stop them. I do know that my stats seem to go up when I post so even if I don’t know who you are, I know you are reading.

I’ve had a horrible day so far. My middle sister has been cleaning my mother’s room. When I got out of my room to take a shower, she said that I had to go through my stuff so she can move her things there. I also had to move the stuff in the living room so she can also move her stuff there. I took my shower and found that the shampoo bottle that had a pump on it, she threw away because the bottle was empty. I was so fucking pissed. I called her an asshole and she got pissed. I don’t care. I am tired of her thinking she is the only person living here and has to make the house the way she wants it to be. I got really suicidal after our exchange. She just doesn’t realize how upset she gets me, like I don’t matter at all. Yesterday she left crap on the stairs, which made it hard for me to go down. I really don’t want to fucking fall and she doesn’t get that my balance is off. She also placed a bin right at the bottom of the stairway, which I kicked out of the way. I got so mad. I texted her, in a neutral way, and got no response. I have no idea if she has blocked me or what but every text I send her, she doesn’t respond to anymore. I sick of her shit. I emailed my psych to let her know what was going on. After the disaster of a family meeting via phone, I really don’t know how to get through to the dumbass. Yet she has the audacity of calling me selfish. Such a projection.

After my shower, I made something to eat. My foot started bothering me but I still did what I had to do. By the time I made it back to my room, it flared up big time. My foot and ankle are competing as to who is going to hurt more. I so want to nap as I have been up since 0630 but I really don’t want to. Will be hard to anyway as there is so much light in my room due to my window being open. I have a hard time sleeping when there is light in my room.

Never had a nap. Just had dinner with my mother. I made hot dogs and beans. My foot wants to fucking kill me. I hate it when simple things cause me pain. You think I was walking miles. Speaking of walking, I really need to get my AFO (ankle foot orthotic) adjusted as my foot keeps slipping. I think I have a bit of atrophy plus with the weight loss, I don’t think it is fitting right. I hate that I gained about 10 pounds while in the hospital, mostly because I was eating three meals a day, but they were huge dishes. I tried to eat a salad with chicken or just a turkey sandwich but it wasn’t always possible because I would forget to fill out the menu for the next day. Sometimes I would skip breakfast as they served eggs at least every other day and I don’t like them. I rather make it. I am just picky like that. The rest of the days they had French toast, which wasn’t bad but it was filling. Since being home, I have been having much smaller meals at least twice a day. Yesterday I just had steak and then a protein bar because I was in too much pain to go downstairs to make something. I forgot how painful stairs were.

I got to fill my med boxes for the week. The doc in the hosp increased the Lamictal and I think it has finally improved my mood somewhat. I kind of feel like what I was before I was in the pit of doom. I am just more tired and on a “day” schedule. I went to bed early, or tried to before pain kept me up till at least 1 am. Then I woke up around 630, only because I had to pee. I am glad I woke up because I leaked. Both my pjs and underwear were wet as I didn’t wear a diaper. I bought a much comfortable brief style while in the hospital because they didn’t have a good kind. I should have brought my own but didn’t think I needed them. Now I know better.

Neil Gaiman’s Good Omens came out the end of May. I got it free because I am an Amazon Prime member. I downloaded the episodes to my Kindle, but I still haven’t watched it yet. I keep meaning to but pain has been a chief distracter. Usually watching a movie or something helps but I don’t have the attention span lately. I can watch short videos and then I get bored if it is more than 10 minutes. I think the only thing I can watch for longer is the Rachel Maddow show. I haven’t watched it in a long while because it was just annoying me. She seems to say the same thing in three different ways over and over. Then she goes on only to come back to the original question or point. I had to take a break and haven’t watched since. Maybe I will watch one episode of Good Omens later tonight, if my pain doesn’t get worse after I do my med boxes.

Clearing room and pain

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, painsomnia, physical pain, suicidality

I’ve been slowly making some progress in my room. I was making room so some office stuff could go in. Then I talked to my youngest sister and she said I should just be clearing my room so they could rip up my rug and fix the wall in my room that is bubbling. News to me. I know they wanted to do this but where they were to put my bedroom stuff and office stuff remains a mystery to me. Unless some of it goes in my Mother’s room while they do the stuff and then vice versa. Yes, they want to rip up my mother’s rug, too. I wouldn’t mind having linoleum. I have always hated having a rug but it was what my mother wanted, not me.

I have been talking to someone on Twitter past couple of weeks, maybe more. My moods have been volitile, not in a violent sense, but in how morbid and suicidal they can become when my chronic pain flares up, which has been awful since the stress and moving/clearing stuff has started. So me and this person talking and I’ve been telling them how suicidal I was. Last night, I was letting go of my feelings, not only talking privately but also in my Twitter feed. The person got concerned so reported me. I was pissed off, worried cops would show up at my house later this morning. I am not sure how Twitter handles such a threat. I may lose access to my account for a bit or I would get a thing of saying someone reported me and I should call a hotline. Or both these should occur as well as a wellness check by local PD. We ended up talking through stuff. I venting to her the frustrations of things but not really saying why I stressed. We go into the dynamics of suicide prevention. She suggested moved to Houston. I told them I thought of going to Menninger for treatment but they just use treatment as usual, which I am not quite sure what that is. I just know it is a 6-8 week program which may help keep some of the demons at bay. One study they did was actually successful in preventing relapse. I forget the discipline they used, but I think it was some kind of CBT. I know David Jobes had tried CAMS with suicidal persons but there was a lack of communication between study personnel and staff. Also some staff had attitudes of “they are just going to do it anyway”, which is a myth. Anyway, as moving doesn’t seem to be an option, I am unable to access the programs the Twitter person mentioned. They were still concerned for my safety and I kept reassuring them I okay. I couldn’t say it with 100% certainty but I knew I wasn’t going to do it last night. I have a baseball game I will be going to tonight and then I am to see my psych Friday. The weekend is up in the air.

I’ve been thinking of ending things for so long now. I probably should be in the hospital but I can’t for fear of what my sisters and mother will do with my stuff. My middle sister has “given” me a month to go through my stuff in the living room. My youngest wants me to go through the stuff in my bedroom. Problem is I cannot be in two places at once. Nor can I do stuff on a daily basis. My pain was through the roof just to finishing clearing 1 box in my room and then setting up my new modem. Now I just need to vacuum the area and go through my bookcase so I can get some books off the floor. I got approximately a shelf and a half, maybe more as there are some books I just want in boxes to put the newer books. I also want to get rid of my subwoofer and desktop computer to make room on my desk. I was going to part with it but have decided not to. I can put some more books on it as well as store my office supplies once I go through the drawers.

There is no doubt my mood has tanked horribly and so fast. My appetite has come back but my normal level of depression has not. I am so stressed with my sister here. She has taken over nearly every room. The kitchen is full of her stuff that there is no counter space like there was. I have no idea why she wanted to have her kitchen stuff here. We don’t need two mixers and can openers as well as towels and utensils. It is too much. And the bathroom! Omg. Her son and her have so many bathroom stuff. I know my mother and i had a lot of bathroom stuff but they have double what we have. JFC.

I need to have my eyes checked. I am not sure if my pain or exhaustion causes my eyes to become unfocused at times or my glasses just need to be updated. Although with my current “extra” money going towards my cable bill this month, I am not sure when I can afford new glasses. I have a pair of frames that I want to have the lenses but not sure they will do that at the eye place I go to or if I have to go else where for the lenses. Last time I just tried to do this, it costed me the same price as getting a frame and lenses. But I think my I insurance will cover the cost so it won’t be as expensive. I want to get the kind of lenses that repel dust and smudges, a type of oil repellent as well as anti glare. This kind is expensive but if it saves me from having to clean my lenses two, three times every day, it will be worth it. The type of frame I have I think will be better for multifocal lenses as they are bigger than what I am wearing now. I hate having to wear glasses all the time because if I don’t my eyes become unfocused and everything becomes blurred. It really hurts my eyes because I am straining them to see.

So this is the update. I wrote this on my phone so if there are typos or words missing (my phone has gotten in the habit of erasing words after I type them) please let me know so I can fix it. Thanks

Just a ramble about chronic pain

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, chronic physical pain, CRPS, depression, mental illness, mood disorders, physical pain

Never thought I would ever be on so many meds for one illness. If it was for my mental illness that would be one thing. But for chronic pain there are like 4 or 5 plus patches and gels and ointments. I’m tired of taking them when flares hit. And there is nothing I can do but let the pain be a 20/10 and hope morning comes so the hell will be over. A family member once said you are on pain medicine, why are you still in pain? Because it is not the pain it was meant to be dealt with. Nerve pain is different than physical pain. Then you have the pain go away and another pops up in another place on your fucking foot or ankle. Chronic pain sucks and need different things to keep it in check and then there is nothing to keep it in check. It just is. That is what CRPS is. Complex regional pain syndrome. So I am off taking another pill that might work. And if it doesn’t or changes to something else, go through the list. So exhausting. This is why I constantly think of death. I have no strength left

Saturday Blog 15 Dec 18

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Saturday Blog 15 Dec 18

I just realized the month is half-way over and I have yet to change the calendar to Dec. Oh well. I didn’t sleep yesterday. I was up for about 21 hours since Thursday and then tried to crash when I got home from my psychiatrist appointment. Because I didn’t sleep and wake up as early as I wanted to, getting a urine sample proved to be impossible. After 2 hours, I left and the emailed my psych telling her I would drop it off Monday. She said the blood and urine had to be same day. Oh well. Next time, I won’t go to the lab unless I know I am going to pee because my damn bladder retention sucks! And it gets worse when it sees a cup or there are noises around. I just can’t relax to go. I tried and tried and nothing was working. I even went to another building’s bathroom and nothing! So hard. Then when I got home, it took a while to pee. I have been feeling off. I really didn’t eat anything yesterday except a protein bar at 3 or 330 am. I just wasn’t hungry. I wanted to have a burrito when I came home but I wanted to sleep, too. I had another protein bar and then took my night meds an hour early though I really didn’t get to sleep until my mother went to bed, like usual.

I was fricken freezing since I came home and could not get warmed up. I had to put the Red Sox throw on my bed. That helped. But then in the middle of the night, I had to take it off because I was fricken hot. I was able to go right back to sleep and then a couple hours later, I woke up with my bladder ready to explode. Oh now you work??!! It was 5 am. I went downstairs and then went back up. I checked my phone for messages and surprisingly, I laid back down and passed out again. I woke up again a few minutes before my morning med alarm. I took my meds and used the bathroom because my bladder was ready to explode again. I thought I would eat but I was too tired. My mother was cleaning out the back porch so the living room was a disaster area. I didn’t see her. I just used the bathroom and then went back up to bed. I wanted to make cookies but I fell back to sleep and then when I woke up, I was too tired to do anything. My stomach was bothering me, probably for lack of food. I went easy. I had some toast. Then made some ramen noodles and a cup of tea. I started sneezing in the kitchen after I ate. Some thing was making me sneeze but I have no idea what. I went back upstairs hoping to finish editing my book but was too tired. I took another nap. I was cold and hot off and on. My throat was hurting but it was okay swallowing. I think my mother stirring up the dust on the porch just set off my allergies. Or I am getting a cold. So much for testosterone causing energy. I haven’t had a decent sleep routine since the Sox won the World Series. I am either not sleeping or sleeping too much. If I was hypomanic, that would explain some things but I am not. I feel down most of the time. Maybe it is depression. I don’t see my psychiatrist until after the new Year.

After my psych appointment, I got my haircut again. I want to start shaving the sides and back again. When I am going to start this again, I don’t know. I wanted to start today but I don’t feel like it. I need to shower. One thing that might be gross to say is that my sweating has changed. I stink more now than I did before. I showered Wed and I smell like I haven’t in a week. I was so tired yesterday that when I came home, I didn’t even wash my hair so if there are hair clippings on my bed, I don’t care. I will try to shower tomorrow. I know I am just playing sleep catch up since I slept poorly yesterday and then was basically on the go all day. I left the house around 930 and didn’t come home till around 5ish. Long day on 3 hours sleep and no food.

I thought with the start of my transition and taking selfies, it would make me not think I am an ugly faced person. But I was going through my gallery of pics and all I kept saying was how awful I look in the pics, even with me semi-smiling. I was going to show off my haircut but I really didn’t feel like it. I wasn’t feeling well anyways. I would just look like a grump.