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.
Since Wed’s appointment I have been feeling exhausted. It was a long test and not much came from it except that the doctor switched alpha blockers. I see the NP in a month to see how things are going and if I am voiding. She was very worried about me not going for 18 hours and had me promise to cath if it should happen again. My legs have been sore the past two days and it has been hard to walk. I need to take a shower and haven’t had the energy to. I also need to shave. I got my haircut on Wed and have not taken any selfies because my hair isn’t spiked like I want it. Yesterday I was supposed to get the vaccine but I was just hurting too much. I didn’t sleep because of shoulder pain and my legs were horrible. I just wanted to rest in my bed. Today I had groceries delivered and that took a lot out of me. I was able to take a nap. My appetite has been low the past few days. I have been eating but very little. I had my biscuits with my coffee today and just now had a bowl of cereal. I think that is all I am going to have today.
My neck has been awful all week. I canceled PT yesterday because I hurt too much with my legs. I hated doing it but walking hurt so much yesterday. I am in a lousy mood. Surgery didn’t help me like I thought it did and that is really hard to take. I had a hard time emptying my bladder. The stress of the test left me feeling really tired. I sent a message to my uro to find out if it is the same thing that is wrong, that the bladder neck muscles aren’t working right. I told her I was thinking about botox. I just wanted to research it a little before I said yes.
I had groceries delivered today and then when they were in my room, I just collapsed. I was able to nap for a couple of hours. I need to shave and shower today but I don’t think it is going to happen. My legs just feel really sore. Even though I just woke up from that nap, I feel another sleep is needed. So I probably will be taking a nap before I go to bed for sleep. I don’t care. I am just so bloody exhausted I can barely keep my eyes open. My mother just called to say dinner is ready. I am not hungry so will pass. I just want to lay down and sleep.
I got this review that I found on my Amazon site the other day. It was written two years ago. Amazon doesn’t notify you when someone leaves a review. But I am happy this person left it. I sent it to my former therapist and she loved it. I sent the review to my cousin and now he wants a copy of the book, signed. I got to order more as I am running low on my copies. I think I gave away my last one. I plan on mailing it out today. It is really nice out.
I had therapy yesterday. It went ok I guess. She doesn’t think going back to school is a good idea. She gave a good example of how therapy is more than just an hour session and so is a class. You need to do the work so now I am thinking of how to do the work outside of our sessions. It bothers me that I can’t go back to college. I really would like my bachelor’s degree from UMass/Boston. I am not sure how I will pay for it but the idea that I just can’t go kills me. I know the stress will not be good for me. It is why I had to quit in 2008. I suffered a psychotic breakdown and I never recovered from it.
I am so fricken tired. I took a two hour nap and I am still fricken tired. I have no energy for anything. Wed is going to be a long day. I have an 8am appointment. I plan on shaving and showering today. I really need to wash my hair as it is very itchy.
I finally am registered for the vaccine and have an appointment Thursday. It is at the convention center in Boston. It is going to be a bit of a walk for me. I think I am going to get off at the T stop rather than walk from Copley. It is going to be 70 degrees out that day so that will be so good. I love going to the Back Bay area. I used to go to college around the corner from there.
I woke up this morning with my shoulders, neck, and ankle hurting me. I had to take a breakthrough med. I didn’t want to so early in the day but I was in so much pain. My PT is not going to be happy about this. I also took some Zanaflex to help relax the muscles. I hate that it gives me dry mouth. I have the lozenges for dry mouth. It helps a lot.
My phone is acting up today for some reason. Apps are closing while using them and I keep getting messages for other apps that something is wrong and it need to close. I’ve restarted the phone several times. There is an update that I just checked. I am installing it now so I hope that helps this issue. I also updated the PRL profile. OK, updates have been installed and I still cannot open the wordpress app. Fuck. I hope I don’t have to do a uninstall/reinstall. There is no update for the app. I don’t know what happened to my phone overnight. I really don’t want to get a new phone. I do need to take a line off my phone because I am not using it. I got to go to the store and have it removed because I tried with a chat and they are so dumb they didn’t know what I was talking about.
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.