Category: cauda equina syndrome

Lazy Sunday

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

Lazy Sunday

I have done nothing because there has been nothing to do without complete exhaustion. I made dinner and I am so tired it isn’t funny. I just heated some ribs and mashed potatoes then cleaned up afterwards so I wouldn’t hear the tyrant bitch. It was enough to get me worked up and feel worse than I was. I don’t know why I am so damn tired all the time. I don’t know if it is because my blood counts are still low. I just feel like crap.

I wrote an email to a friend and tried reading my book. It has been hard reading Marsha Linehan’s book as there are so many parallels between her illness and my own. The feelings are palpable and it stirs up stuff. She talked about finding god and being transformed when she found him. I can understand that. Lots of people do when their faith is strong enough or so I hear. I am glad she found him so she could move on with the demons of her life and work on “getting people out of hell”. She writes this so many times. I read some of the reviews for the book and there was a lot of complaints about this. I don’t mind it though as it is her life’s work and her book. She can write it as many times as she wants. It is how she developed a brilliant therapy that helped saved millions of lives.

Today has been a cool day so I have the AC off. I don’t remember what the weather is going to be like tomorrow. There was talk of thunderstorms but I haven’t seen the latest reports about this. It might have changed course or something. I will check it before bed. I am just worried about rain coming through the AC vent as it is open because my brother in law broke it. I have tape on it but that won’t hold much if the rain is heavy. It is windy out but not gusty.

I’ve been listening to Terri Clark and Mary Chapin Carpenter. I haven’t been on social media much. It is too upsetting for me right now. I have been trying to just rest like I should be with this stupid fluid build up. I don’t know when I will be having surgery. I am guessing sometime next week or the week after. I am kind of scared of the recovery as this first time was a doozy. It has been 10 weeks since my surgery and I still feel so tired and exhausted with doing anything. I just want to nap all the time. Yesterday I slept most of the day. I can’t stand how my stamina is so low. I am not sure what will increase it. I guess I need to do more but I don’t want the leak to get worse. I am on my last day of steroids. I hope the headaches don’t come back when I completely stop them. I don’t like the headaches as they just make me tired.

Saturday Blog 30052020

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

Saturday Blog 30052020

Last few days have been rough. I haven’t been feeling well, emotionally or physically. Things just seem to be out of my grasp in handling them. I feel so low and the recent events of out west with George Floyd have hurt so much. I can only imagine the pain his family must be going through. I am glad the officer got arrested but more needs to be done. This cannot continue to happen but I know that it will. There are too many racists cops out there and people as well.

My ankle has been hurting me the past few days. It has been driving me up a fricken wall. Nothing I do helps it. I just been taking neurontin because the pain meds haven’t been touching it. Sucks when nothing helps your pain. It has been bringing me down. My back has also been bothering me with cramping up a storm. I have to take Zanaflex, which makes me sleepy. I have slept all day today because I was so tired. I have been waking up in the middle of the night because I had to pee or because of a weird dream. It gets so tiring. I have to cath most times because the urine urge isn’t strong enough. That has been irritating me, both physically and mentally. I know I still have the UTI. The NP called saying she had to switch antibiotics because it wasn’t effective. Now I am on the right one I hope to feel better soon. I feel so washed up it’s not funny. I wish there was a way to make things stop hurting. There is but no one wants me to do it.

I reached out to a friend the other night when I was feeling low. We have only just met on Twitter and been talking the past few months. She is a good person to talk to. She is almost like a shrink with her questions, LOL. I appreciate her though. It helps to talk to someone who gets it. She encouraged me to reach out to my other friends and I did. It was helpful.

I bought a new electric toothbrush. I feel like I would brush my teeth better with an electric one than a manual. It was on sale on Amazon for $20 so wasn’t bad. I just got to bring it downstairs so I can use it. It needs to be charged though. I think there is enough power in it for one brush though. I am dying to use it to see how I like it. It is a sonic toothbrush. I hope I do like it.

I wrote a letter to my therapist the other night about how things have been going. I think she read it. She didn’t respond to it, but then I wasn’t expecting a response. I told her about the difficulty of meeting virtually. I felt that was important for her to know as I am often so damn quiet because my thoughts are blank. I am not really thinking of anything, I just blank out. I don’t know if it is just the technology or what but it is so hard to focus on things when on the computer. Even when I am blogging I space out. But then I can always go to the internet to pass time. I can’t do that when you are talking to someone. That is just rude. I think there will be a way to work it out virtually but it will take some doing. I think she needs to ask more questions other than “what is going?”

I need a haircut!

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

I need a haircut!

I need a haircut. My hair is getting so long and I don’t like it at all. The top keeps sticking up, looking like a mop. My barber said there will be some changes to the shop. He will have appointments only, no more walk ins. This is to reduce the number of people in the shop. He hopes to implement this next week. I cannot wait for to see him again. I really miss him. He is such a good guy.

I had my appointment with my therapist the other day. She wants me to join a DBT group to help the intense feelings I get, particularly the suicidal feelings. I said I would be for some of it as I don’t believe in the whole thing. She said that was fine as long as I tried. I don’t know how this is going to be around my surgery but we’ll see. I don’t know how fast this will be. Everything is virtual so we’ll see.

Been thinking of writing my therapist a letter. I am not sure what to write but I know there is some things I want to communicate with her that I can’t seem to do in session. I am hesitant to write it for fear she won’t read it and my words will be wasted. It has happened before. I just don’t know how to word what I want to say. I want to tell her that this virtual thing isn’t working out as I am finding it difficult to talk. I am sure she has noticed but she tends to believe that I don’t want to talk, period. That isn’t the case. I just blank out where nothing is on my mind and I can’t seem to think of anything to say. Maybe she can ask questions and that will help break the ice, so to speak. I don’t know what else to do. Therapy is so hard and she is a real hard ass.

I am out of my breakthrough meds so I don’t know what I am going to do when pain hits. My doc hasn’t called in a refill I requested on Tues. I sent another request but haven’t gotten a response. I even sent a message asking if they have received it. No response from that either. I feel so bad that this has happened. My doc is usually good about prescriptions. I am sure there is some mess up with the computer. It is the only explanation.

The UTI symptoms have not gone away. I am still getting strong urges to pee. Sometimes I make it to the bathroom, other times I dribble. I hate when I dribble. I still don’t have complete control when I have an infection. When I don’t have an infection, I need ransom money to get the urine out. It is terrible. This is when I have to cath. I hate it. Makes me feel so disabled. I don’t talk about this in therapy because I feel like my therapist isn’t interested in what I have to say about it. There are a lot of stuff I don’t feel comfortable talking about with my nerve injury. My previous therapist I could talk to about it and it was validating. Lately I have been feeling like I don’t want therapy anymore. I just don’t get the point when nothing changes. I still feel the same way about things. I try to implement skills that I have learned but it is hard in the moment to do so. I just feel like I am wasting my therapist’s time. It is so damn difficult to open up to her at times. I don’t know if it is me or her. I know she is a good therapist but at the same time I am starting to question whether she is right for me. I have been seeing her for almost a year. A long time but also been through a lot.

Champagne Night

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

Champagne night

Lady A just came out with a new song called Champagne night and I love this jam. It is so good. They played it live last night and it was awesome. I watched it for a little bit until I had to go to the bathroom for a million times. I have no idea what was wrong with my bladder and bowels last night but all I did was go. I think I have a UTI and for the bowels, I have no clue what was going on. It was so annoying.

The night before I posted a tweet that said what I needed to end my life and that things weren’t that much different than they were 25 years ago. I am reading Marsha Linehan’s memoir and found that between the ages of 18-20 we went through our own version of “hell” and while she became a famous psychologist, I am still suffering and wanting to end my life. I texted my therapist this tweet and I got met with a need to go to the hospital if I am not safe and if I am having thoughts than I need to call a hotline. Apparently telling your therapist these things is not an option. I am kind of mad but I am so used to people turning away when I am suicidal that at this point it is just expected. Except on Twitter where at least three people tweeted at me if I wanted to talk, I could talk to them. One of them DM’d me so we chatted for a bit until I fell asleep. I find this kind of support preferable to calling a hotline or going to the emergency room.

I had to restart Word as it needed to update. I was getting annoyed as I wanted to write stuff but I kept getting delayed. I should have just got the pad of paper and a pen and wrote. I think that is what I am going to do for the 200 word piece I want to write. It is still percolating in my brain. I keep thinking about it so it is close to being written soon. It takes me a while to write what I want, especially these days where one day melts into another. I want to stress that in my writing because I think it is important when you have a disability and lose track of time in this pandemic. I mostly just stay in my room because I am scared my visit to the pharmacy might have caused me to be exposed so I don’t want to expose my mother or sister or nephew. I just isolate and stay away from my family.

I had to go to the pharmacy tonight because I am almost out of the AZO pills for the UTI I have. I had to get some more and while I was out, I got a thing of Oreo ice cream because why not? It was not available in the grocery store when I went last but it was available in the pharmacy. I will take it! At six bucks a carton. Yikes, highway robbery though. I think it is worth it. You are paying for the convenience of the item but the price is about the same in the grocery store. I hope I will be able to buy groceries next week. I need some things again. I still have plenty of cereal but I want meat and fish. I was sad that they took away my beer battered fish. I will have to get it in the store now. I need to go to the store sometime next week. Maybe I can get my brother in law to take me. I just need a few items. My cousin was to take my yesterday but he “got better things to do” basically. I didn’t feel like going out yesterday anyways. I didn’t sleep well and I was really tired. I didn’t sleep last night either. Next door neighbor’s car had a squeaky belt so it woke me up at 0130. I couldn’t go back to sleep because I got a bad headache. I slept like every two hours. I finally gave up and then after breakfast, took a three hour nap. Just hope I can sleep tonight. Last night was difficult because some asshole decided to set off fireworks at 2330! WTF it isn’t even June yet! I hate assholes.