Category: cauda equina syndrome

I’ve been down since July…

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

I’ve been down since July…

Been listening to the song Evermore by Taylor Swift. It is a song that I can relate to. It means so much to me. I am home alone and listening via my Bluetooth headset. I had two cups of coffee today and I am not feeling hungry at all despite just having the belVita biscuits with the coffee. I am trying to keep track of my bladder function by recording the times I void in an excel sheet on my phone. I just added cath to my med app so I know what time I am supposed to go by. I just drank a bunch of Gatorade so I am hoping to go soon. I am supposed to go every 4-6 hours, more if I drink a lot or have coffee. I have been sticking with the six hour mark rather than four because otherwise I would be cathing instead of voiding on my own. I just don’t get the urge till around really the 5 hour mark. This is all because of the nerve damage caused by the tethered cord that I had and needed surgery for a year ago.

It was a nice day yesterday. I drank my coffee on the back porch. I want to put a chair out there so I can go and sit on the porch and just be outside for a bit. I have to buy the chair. A plastic one so it can be easily washed and not have to worry about the weather spoiling it. Just will have to worry on windy days because it could get blown off the porch!

I had therapy Monday. It ended with me being annoyed. We were talking about my deconditioned body and she wants me to talk to my PT about what I can do about it. Basically it means more PT for me and she said I could have a year of it to regain my strength back. I think she is right. The idea of going back to PT doesn’t appeal to me but I know that I have to do it if I want the short of breath and tiredness to go away. Then I got depressed and we talked about that and how frustrated I am by the managing chronic pain book that I bought. As we ended she said not to work on it until our next session when we can do it together.

I need to shave and shower. I have PT this afternoon. I am not sure if I will be going because my bowels seem to be unpredictable right now. I might have a virtual appointment with her. I need to go out as it has been a week since I last left the house. I had my T shot today in my left nerve damaged thigh. I am kind of hurting but it isn’t too bad. My ankle is hurting me more than my thigh. Having the shot in my thigh always worries me. I need to walk it off and I will today when I go out for my appointment. It is going to be another nice day today, though cooler than it was yesterday.

Last night I was pretty depressed and suicidal. I don’t really know why. I just got overwhelmed with being sad and just wanted to die. I was listening to the song Exile by Taylor Swift. The lyrics were so powerful. I kept wondering why I am still alive. I want to be dead so bad yet the people around me keep me here and I resent them. I really wish I could live some where else so I can be away from my toxic family. I know being around my mother is not good for my mental health but I have no where else to go. I don’t earn enough money to pay rent somewhere. I can’t work. Just sucks and I will always have suicide as an option.

awake at 3am

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

I woke up at 3

I woke up at 3am and am still up so I ordered breakfast. I am kind of hungry. My mother’s baby monitor alarm went off shortly after I woke up. She had to go to the bathroom and my sister was there to help her. I was supposed to watch her tonight but got a flare after an emotional response to my mother after she called me a “she”. I hate when I get emotional flares of pain. I hate that CRPS is so dependent on my state of mind sometimes.

I had the breakfast but couldn’t finish the 3rd burrito. It was cold and I was already getting full. I thought about making a cup of tea but didn’t want to stay in the kitchen. I wanted to try to get back to bed. So I am writing a blog to exhaust myself before trying to get back to sleep. I had woken up with back pain which is never a good sign. I took some Tylenol to try and settle it down. I really hope I didn’t so something to my back. I see the neurosurgeon next week and I wanted him to sign me off but I am not so sure he will now that my back has flared up. I have been doing more stuff lately so I can understand why my back is flared. The sneeze I had yesterday morning didn’t help. I felt like I pulled a muscle and that is what it feels like.

I have lots to do today. I need to clear off a space in my room so it is less dusty. I also need to change my bedding. My new foam topper should be arriving today. I don’t know when but I hope it is in the morning and not the evening. My hope is to put it on my bed and then watch my mother while it settles on my bed. I have to have it like that for at least 24 hours. So I can’t be on my bed at that time. I am going to need a chair to sit down because I can’t stand while doing stuff for long periods. That will definitely flare me up more. I really need to get stuff done in my room. My sisters want to replace the rug with a wood laminate. I don’t mind. I hate having a rug anyways. I just hope my bed doesn’t roll on the floor. I got wheels on my bed that have sunk into the rug. One of them have broken due to the weight of me and the bed. But they are cheap plastic wheels so I am not surprised. I hope I can remove them and just have a stopper instead.

The other day I had a phone call with the reporter that is doing a book on suicide. He is interviewing people from the study I was involved in last year. We have become good friends. He asked me how the partial hospital was going with it being virtual. I told him how it was and how distant you can be while being online. You really don’t make friends with the group members because there is no real interaction.

I had ordered my meds by mail and I receive one of the two packages. I should be getting the other one sometime today. I hope so because I am running low on one of my meds. I am surprised it has taken this long. I usually get them right away after I get the email that said they have been shipped.

I am constipated again so I just took some Miralax. Surprisingly, I haven’t had the soft stool that I usually get while taking it, which is good because that means no accidents. I have lost the control of loose soft stool. I can’t keep it in anymore. Hard stuff I can but if it is soft and mushy, forget about it. I think I need to take Miralax regularly for a few days so that I can go every day. I feel backed up when I don’t go for a day or so. I feel like I should take 1000 mg of magnesium at night just so I can go. I hate being constipated. It is the worst feeling in the world.

One thing I have noticed since going to partial is that my suicidal thoughts have gone away. I am not so suicidal anymore. But I still wish that I was dead. I haven’t actively planned anything in a while. I think that is good. I will bring it up in therapy on Monday. I haven’t heard from partial about extending my time. I hope they do. I am so anxious about this. I hope they approve it and will be sad if they don’t.

Busy Tuesday 25082020

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

Busy Tuesday 25082020

I’ve had a busy day and it’s not completely over yet. I went to get tested for Covid. That was horrendous. I hated it but I did okay. I was in and out which was good. I caught the bus back to the Square. My barber didn’t have any openings so I went home to get something to drink and cool off a bit as well as charge my phone. After about twenty minutes I left the house again to go back to the Square to get my haircut. I wanted to go to the grocery store but my back is still spasming up a storm. There was no way I could walk around the store without pain so I ditched the plans and just came home after my haircut.

I am home now and am packing my bag for the hospital. I still got to throw some sheets in the wash. I also need to shave and shower. I got to wash my hair. Right now I am so exhausted I just want to pull the covers over me and try and nap. I haven’t decided if I am going to take my electric razor with me. If I shave today or tomorrow, I will take it with me so I can prevent a beard from growing. With this heat, I am not liking facial hair.

I didn’t wear my AFO again today. I thought I would be okay but my stupid ankle is acting up right now. Fuck. Feels like someone is trying to cut it in half. I took a BT med because what else am I going to do? I took a risk by not wearing it and now I am paying the price. I don’t know why I do this. I guess I want to test to see how far I can walk before pain hits me. I know I am fine with short distances. But longer distances like today was too much.

I don’t think I will be washing my sheets today. I am being hit with a deep wave of exhaustion and I think I will have just enough energy for a shave and shower, provided my back doesn’t continue to act up. I took preventative Zanaflex so in an hour from now I should be able to shower without issues, I hope so anyways. I still need to get my bag together. I am going to be taking my catheters with me so that if I have to use them, I will cath myself rather than a nurse. I really hope that if I do have to cath it is because of the medication they are giving me caused retention to worsen. My biggest worry is the constipation that will happen. I was loaded with a lot of stuff to go last time and it took like three days for me to finally have a movement. I am hoping to have a semi decent movement before surgery so I don’t have to be so full. But I don’t know what makes me go and what doesn’t. I can’t take senna the night before so I will have to take the senna tonight and then hope tomorrow I go decently.

I am glad my therapist is so straightforward with me. I know that I have a serious severe mental illness but in the back of my mind, I didn’t want to admit it. Hearing her tell it out loud made me realize that it is true. I am struggling with this so much. And there isn’t many meds I can be on because of stomach upset. I might go on celexa again. It was the only drug that I was on for a few years before it became ineffective. I don’t know what the new psychiatrist is going to be like. I feel sad that it isn’t going to be my psych. I wonder if s/he will be aggressive in treating my illness like the NP is. I am meeting with her (NP) tomorrow to discuss my options. I don’t know if I want to start something right before my surgery. I think I will when I am home from it all. I think it will be best to start something when I am not on so many meds from surgery. I still don’t know when I will restart therapy. I am thinking of giving myself a break and going back when I feel like it, like three weeks from now or something like that. I am sure she won’t even know that I am gone that long.

I don’t know why anxiety is crushing me right now. There have been moments in the past hour where I feel I can’t breathe. I literally have to tell myself to take a deep breath and do this a few times to calm down and feel like I am breathing again. It’s driving me crazy having these episodes. I know tomorrow is going to be worse with them because it will be one day before surgery. I half thought of killing myself before surgery just so I don’t have to go through with it. It was only a half thought but still, got me thinking. I won’t do it as much as I really want to escape from this. I just want to say that I am fine and go on with my life but I know that I will still feel like shit until the fluid collection get small enough to not bother me anymore which at this rate might be more than a year from now. It is my choice whether to keep things as they are (crummy) or to try and make things better. I hope I am making the right choice. I will find out this time Thursday evening or so.

Thursday’s Thoughts

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

Thursday’s thoughts

I am not thinking of much right now. I have about a half hour before therapy. I nearly slept through my PT appointment. Thank goodness she called me. I glanced at my phone and saw it was 11 but I didn’t get up because I forgot about the appointment. We had it with time to spare. I got three new exercises to do while in bed. That will be good on days I don’t feel like going to the kitchen to do my sitting up and standing ones. She thinks she can improve my stamina while walking. I told her I am thinking of surgery to drain the fluid pocket that is causing me so much trouble. She wants me to think about it and she will be there to help me get back to “normal”, whatever that is. I just know that I don’t want to huff and puff while walking somewhere. If I can accomplish that, I will be in good shape.

Therapy went well. I will be trying a new sleep routine as I have had severe insomnia the past few nights. I hope that I can stick to it. We also talked about how frustrating it is that I am still not better after all this time. And about having possible surgery. She said not to go down the bad thought road as that might make me more susceptible to a bad outcome after surgery. I am trying not to think of this at all but I am facing it as I don’t know if the steroids will work for good this time. I am not sure what will happen after Monday. I am so tempted to just get the MRI and have the talk of surgery. I feel that if I have the MRI and see if the fluid collection gets smaller with this course of steroids. Only side effect I am having is stomach upset. I just take Mylanta when it is bad. It helps. We also talked about my psych. I was expecting her to be judgmental but she wasn’t. I am glad as I was nervous bringing it up. She needs to know that I am in contact with her because there is a chance I will be seeing her again as my psychopharm. I didn’t tell her how my appointment with the NP psychopharm went. I was sworn to confidentiality about what we talked about. It was upsetting and I am not sure she will be sticking around come the fall. I really don’t want to lose another provider but she needs to do what she needs to do.

I need to shower but I haven’t had the energy to take it. I did trim down my beard as it was getting itchy. I wanted to shave it all off but I held back as I would have to shower afterwards. I might do it after I write this blog. I plan on seeing my barber tomorrow so would like my hair to be washed. I also plan on going to Starbucks for a damn mocha. I have been having severe Starbucks withdrawal since the pandemic started and I was in no shape to be traveling to the stores anyway as I was just recovering from surgery. Hell I am still recovering from surgery and it is frustrating as all hell. I just hope PT is able to help me lead a better life than what I am currently experiencing. I can’t take another mishap. Which is why I am not looking forward to another potential surgery in the upcoming weeks. Just really hoping that the steroids work. PT is optimistic that because the steroids are systemic they should work. I hope she is right because I don’t think I can face another surgery.

My step count is at 316. I have 84 steps to make 400 for the day. I think I can do it if I try. I will be going downstairs more. I just been leaving my room to eat and use the bathroom. I haven’t been walking around the house that much. I will later. I am certain I can do 84 steps or more by the end of tonight.