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.
A blog about being blah
I am feeling really depressed and blah today. I woke up late, around 1330. My neck has been hurting me since last night. I put some heat on it while I was having my coffee. It is really warm out today so I was sweating with the heat. I didn’t feel like going out. I don’t feel like doing anything today. I should shower but I don’t even have the energy for that. I still need to do my meds for the week. I’ll do that after I write this blog.
I put in my appointments for the month in my calendar. They are mostly PT appointments. I have a few sessions left and then I am done. She has done as much as she can do for me. I am glad I am not waking up in pain anymore with my shoulder anyway.
“rather die than live in fear”. I got this quote from somewhere, probably Twitter and it has been resonating with me the last few days. It has increased my suicidality. I would rather die than live in fear with my family. The resentment and disrespect is sometimes too much for me. The gender dysphoria sets in and I wonder why I am the way I am. I question who I am and wonder if it is worth it. I just feel so worthless at times that I wonder if it would be better if I was dead.
I see my therapist tomorrow and will be bringing this up to her. I don’t know if we are ever going to start work on the pain workbook or not. Seems to be always something in the way of us getting into it. I am having some serious pain right now in my leg. My ankle and shin hurt so bad. It is getting hard to write. I hate CRPS so much. All it does is take, take, take. I can’t remember the last time I had a day without pain. Now I got the shoulder and neck thing going on for god knows how long. Just something else I got to live with. Been living with this pain for five months now. I think it can be called chronic pain. Just add it to my list of why I should die.
My neck is acting up again. I just took some Zanaflex to calm it down. All my muscles are tense in my shoulder and neck. Stretching my neck from side to side is still hard to do. It hurts so much. I have been trying to keep off my phone so I don’t aggravate it further but it has been hard. I don’t know why the neck has flared up. It takes so much to calm it down and I don’t see my PT till later this week. I have been working really hard with the exercises and stretching that have been given to me. I just can’t seem to calm down the tension in my neck and shoulders. The pain is so bad it depresses me every time because I can’t do much when I hurt. All I do is lay down and stay as still as possible.
Saturday Blog 20032021
I just shaved my head and it feels really good. I didn’t shower because I didn’t feel like it. I will probably shower tomorrow. I haven’t done anything else today. I wanted a bowl of cereal but there is no milk. My sister is at the grocery store shopping. I am glad because I would leave the house to go pick some up at the store.
My back is bothering me today. My sister had me cut up some boxes and it wore me out. I tried napping but didn’t get anywhere. My neck is also stiff and hurts when I move it. I need to put heat on it. I have been bad about using heat the past few days. Part of the problem is that I brought the neck wrap to my room and I keep forgetting to take it with me when I leave for the kitchen.
I woke up several times last night. I kept on having weird dreams about being back in the lab at work. It is so rare for me to sleep through the night. I am just glad I didn’t have to get up to go pee. I did have a full bladder when I got up around 10. The weird part was that even though I was full, I was not getting the urge to pee. Like I knew I had to pee but even though I was uncomfortable, I didn’t want to move and it was ok for me to stay where I was. So weird. I know I am not going to do good on the urodynamic test. I just hope I can pee when they tell me to or they will have to drain me like they did last time. I really hope the urologist doesn’t say I have to cath again because of the retention. I am so nervous about my upcoming appointment on Wednesday.
I am listening to Pearl Jam. I needed some frustration released. I love listening to only three of their albums, Ten, VS, and Lightening Bolt. Such good songs. I really love listening to them when I am in a bad mood.
I found out the Muppet Show is on Disney+ and now I want to watch it. I haven’t seen the episodes since I was a kid. I don’t know if I will actually watch it. I really have to be bored to watch a program. I don’t like watching shows that much anymore. I rather read a book but I currently am not reading anything. I gave up on the Reagan/Gorbachev book I was reading a while back. It was a bore to read. The writer really was dry.
I woke up this morning with a strong urge to pee around 745 so got up and did my business. I was thankful no one was in the bathroom because I don’t think I would have been able to hold it. I came back to my room and took my morning meds. I then went to lay down to go back to sleep when I got a sneeze attack. I must have sneezed like 10 times in a row. It really woke me up so I decided to have coffee. I had my belVita biscuits and my mother called them cookies. I don’t care. I have been eating them nearly every day for weeks now. I have bought different flavors and really love the Golden Oat. They keep me full for a couple of hours before lunch anyway.
Yesterday I didn’t want to do a damn thing but that was not meant to be. I had an early morning bowel accident which caused me to have to shower to get clean. I felt really bad but I just couldn’t hold it as it was such soft stool. I then was in charge of making sure my mother took her walks around the house. She didn’t no matter how much I threatened her. She had her sewing to do and that is all she did.
Today my mother is expecting the home RN and PT to come. I will stay so I know what she hears is what is said. Her blood pressure was on the low side. I hope it improves by the time the nurse gets here. I really don’t want to have her in the hospital again.
I can’t wait to get my haircut next week. The top of my head of hair is so uneven. I want to have it short and spikey. I am hoping to get my haircut after all my appointments next week. I have to go for urodynamic testing and then go for an EKG. I just messaged my psychiatrist to make sure it is ordered so there won’t be a problem. I don’t see it on my upcoming procedures.
I still have not gotten my stimulus money. I wonder if I will get it next week with my SSD payment. I can finally order my groceries from Stop and Shop. Still haven’t decided if I am going to get a new mattress or not. I bought a new foam topper and it works wonderfully. It stays on the bed like it is supposed to.
I am so tired today. All I did was have coffee. I am in pain so that is probably why. My back started hurting while I was taking my mother’s blood pressure. I can’t stand hunched over for too long. My leg is bothering right now. Damn hamstring. I wish I could find a stretch that worked for the pain. I have a couple of tennis balls under my leg right now and that seems to be helping the pain some. I can’t roll it because of the foam topper. I am just glad I have some relief. It is cold today and windy so my room is like 66 degrees. I should shut off the ceiling fan…