Tag: Blogging

What you see is what you get

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders
What you see is what you get I saw this on Instagram and had to share it. It was so funny to me. I made breakfast this morning and then my mother wanted me to go downstairs for some ingredients so she could make something. As I was going leaving my apartment to go to my sisters, I tripped on the mat that was by the door. Fucking thing flared up my foot and ankle because it had to be my CRPS limb. My right one is a little sprained. I talked with my PT and she did say to start off slow and then increase to tolerance. If that doesn’t work, I am to see my doc and get a PT script to see her. I hope it doesn’t come to that. Last night I was having a hard time with the voices. I did send the text to my therapist but have not heard back. I don’t think I will. I am probably going to get yelled at for sending her the text but I don’t care anymore. If I feel like texting I will and if she responds she does and if she doesn’t fine. I have been trying not to text but sometimes I feel like sharing my emotions with her. Maybe I should just get a notebook and write down what I feel rather than text her. I don’t know. I just have so many emotions that sometimes I can’t handle it and need to let someone know how I am feeling, someone that I know will care and not be judgmental about it. I just showered and shaved. It felt good. I feel a little bit better now that I am clean. I am kind of worried though because I cathed before showering and there was a little blood clot in the stream. I am not sure if it is something to be worried about or not. The urine was clear, not bloody or reddish. I just left a message with the clinic nurse. I hope I don’t have to go into town today. I really am not up for it. My right ankle is swollen as I think I sprained or strained it again. I have been trying to rest it as much as possible but the agitation from the voices doesn’t keep me still enough to rest. The voices are quiet and I am just hearing my regular voices. I still have my reading voice so that is good. I did take an increase in the Invega this morning and a PRN of perphenazine. It is helping to keep me calm. The eczema around my eyes are back because of the cold dry weather we are having. The shower water stung my eyes so bad so I just put in the lotion I am supposed to use. I will use it the next few days to calm it down. I hate the dry skin under my lids as it looks like eye crud. My right ankle is all swollen. It is my “good” one. I have to start doing the home PT exercises that I was taught last year when I sprained it. Just hope I don’t have to go back to PT. That will be such a PITA. I was talking to a writer friend about this paper that I am writing. I started off with good intentions and then it all went to crap. I asked what to do to fix it and she said to start over. Fuck. I think I will use some of what I written in a copy and paste thing because there were some good points I wrote. I don’t know if this will be a good paper as I am struggling with it a lot. Not sure it will be a blog or not. I haven’t decided what to do with it. But it has to be written first. So it is back to the drawing room, I guess.

I have a need for solitude

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

I have a need for solitude

This line is in another great Mary Chapin Carpenter song called it. I have been listening to a lot of MCC the past few days and it is because I need some music to calm me down and put me in a good mood. She does this as her voice is so soothing to me.

I’ve had a rough day. Voices won tonight, though I made believe they did. I always have a short supply of nortriptyline by my bed and I pretended I “took the bottle.” They think I overdosed but I didn’t. It was the only thing I could think of to shut them up. I am debating texting my therapist this but I am afraid if I do. I am going to increase my dose of Invega to 6mg daily and see how that goes. I hope I don’t get side effects.

My therapist and I talked today about being depressed and suicidal. I told her that there have been times I haven’t been depressed yet been really suicidal and then she pointed out all the times she has known me, I have been depressed and therefore suicidal. I wonder if she thought because I was in a current depressive episode that being suicidal went along with it? Going to ask her next time I see her. She really irks me. She gave me the option, after I told her I was suicidal and hearing voices, to take a month of therapy off. I don’t get it. Sure she was telling me that nothing was forcing me to stay in therapy. She has that way about her. She was being serious when she said this. And it is true. I am not being forced into therapy. It is all voluntary. I don’t know why it bothers me so much though when she says it.

I have been really thirsty since coming home. I don’t know why other than I really haven’t been drinking much the past few days. I have been bad. Then I drink a ton and go to sleep only to wake up at 3 in the morning having to go pee. It sucks. I am falling asleep as I am typing this so I am going to stop here for the night. I will try and write more tomorrow.

walking in the mud today

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

Walking in mud today

I had an appointment today with the behavioral psychologist. I didn’t want to leave my house as I had a bowel accident soon after waking up. I lost control and was feeling shitty, no pun intended. I felt really down and anxious. I left when I had to, remembering that I had to go the opposite way I go for my medical and therapy appointments. My mother needed something mailed so I decided to take the block to the main street rather than walk to the end of my street to cross it. I felt like I was walking in mud the whole time. My legs felt so damn heavy I didn’t think I was ever going to reach my destination. I wasn’t short of breath or anything. I just was so damn tired. To get to this appointment involved a lot of walking and by the time I reached the psychologist’s office building, my right ankle was tender and tired. The appointment went well. I have one more appointment with him and that will be our closing one. I won’t have to see him again after that. My feet will be glad.

I came home and basically collapsed. I was hungry so I had the peanut butter and jelly sandwich I had taken out of the freezer. It was the Smuckers kind that was all ready made. I like them because they are already made and I don’t have to stand to make a sandwich. I then went up to my room and tried the past several hours to think of something to write. I had the title, which usually is my stopping point. I was thinking of the blog since I was walking in mud but sort of lost my words once I wrote it out. I had some things I wanted to tell my neurosurgeon but I forgot those, too. His nurse practitioner had called me before my appointment with the psychologist and told me losing my bowels was more evidence I had a tethered cord. But she wasn’t worried about it. Fuck. I have to suffer another five fucking weeks? I don’t want to be incontinent with my damn bowels. I want to ask the neurosurgeon if waiting is a good idea. I can’t imagine that as my nerve damage is getting worse that waiting five fricken weeks is a wise decision. I hope the doc reads the message and not the unit secretary or that NP I spoke to today. These nerves are fragile and I just feel like if I have to wait, I am not going to get function back. I really don’t want to cath and be in diapers the rest of my life. I will end up killing myself if this happens.

news broken and…

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, recurrent major depressive disorder

News broken and…

I broke the news about my having surgery and my mother burst into tears for god knows what reason. Even after her breakdown she didn’t know why she cried. She obviously doesn’t want me to have surgery. She doesn’t understand and my youngest sister tried to get her to. I don’t know how much of it was because she couldn’t hear or just couldn’t tolerate talking about it. My middle sister was adamant I was being selfish because I didn’t think of my aftercare. She doesn’t want to take care of me so I will have to have home services if I need it. Fuck. So will have to set those up as well as meal plan as I will be on my own and as much as I like Ensure, I really don’t want to be on a liquid diet while I recover. I will have to make sure I order some. I already have a $200 grocery tab going. Not sure I will have $40 for a case through Amazon.

I just googled the surgery and it is approximately four hours or more long. Fricken crazy. I wonder if I will have to shave my back. I got a lot of hair back there. The testosterone has made me so damn hairy. I hope I will be okay with everything. My sister was thinking of all the disasters that could happen. Thanks but I am already imagining walking in the hospital and being wheeled out. I have no idea what will happen if that happens. I might have to go to a rehab hospital for a bit but the house is not handicap equip and unless they give out loans to make the house accessible, I am not sure what would happen. Granted we are adding rooms to the house so I could take one but I would need an elevator to get to the second floor or some kind of lift.

I went to Starbucks today to try and write an essay and it didn’t happen. I got into watching traffic and social media. I should not turn on the WIFI but I did and well, 145 words got written. That was it. On the way home my foot acted up and two hours later I got the worse pain spasms ever. I was screaming they were so fricken painful. I just wanted to die. The voices started to ramp up during this time so in between screams I am hearing orders to kill myself. I couldn’t move so I just sat there being tormented. Once the pain meds kicked in, I was able to go downstairs for dinner. The voices are still murmuring in the background but not as troublesome. God they were so fricken loud. One of them is still trying to break through but I am ignoring him. He is eventually going to get pissed at me and I hope not because that will mean I have to listen to him and that will mean hospitalization. I wish I could get hospitalized without my family knowing where I will be going. Sucks I have to tell my mother where I am all the fricken time. I am 44 I think I can handle shit on my own like I have since I was 15.

Today is the official day I got diagnosed with cauda equina syndrome. You can google it or check out my blogs about it if you want. I am not going to say more about it. Because my psychiatrist and I first met some time this month, I think today is perfect to pick for our anniversary. I just sent her an email with my thoughts on it. Figures I would have a flare on my left ankle/foot on this day just to spook me. Having this kind of pain, numbness, and loss of function is what sent me to the ER, on my psych’s urging. She knew then something was terribly wrong and then when the residents called her, she told me at 4 am that I had this horrible condition. I still am and never will be 100% recovered. This is why I am hoping against hope that my surgery doesn’t have complications and that I can walk out the door instead of being wheeled.