Last night I called it cousin and he asked if I needed anything. I said I needed to go food shopping so he said he would take me today. So I went. Then I went to the post office to drop off a package. Came home put the groceries away. Then showered. After the shower, I made something to eat. Spoons were totally used up and then some by this time. I was hurting big time. Back was in spasms. And I got a headache. I needed to lay down so around 3 I did. I rest for about 50 mins when my med alarm went off for my afternoon/evening med. I stayed up for a little while and then I had to lay down again. My head hurt so bad and still does despite taking tylenol.
I had a hard time sleeping last night. I didn’t go to bed till 4 am or after. I was afraid I would have weird dreams and I did wake with some weird ass dream again. They just creep me out more than scare me. Half the time I awake and shake my head at the weirdness of it all. It might make sense in the dream but it doesn’t make sense when you wake up.
Last night around midnight I started thinking of suicide and how I would do it. I texted my therapist and told her she needs to ask what my level is from now on. She asked me if this was a comment or a request. WTF seriously? I didn’t have to say anything. I could have just kept my mouth (and fingers) quiet. I already had planned this out before. Today I was reminded of a tweet I wrote in Dec, “I just realized with my “proposed” plan, I could finish what I started 25 years ago. Question is what do I have worth living for today I didn’t have back then?”
If I am conscious at my next therapy session, I will ask my therapist if I have a life worth living. Because right now, I don’t feel I do.
This song was playing when I started typing so I thought I would share it. It is a song by Keith Urban and called We Were. I really love this song. It is on his new album, which I am not sure has come out or not. There are a few artists that I haven’t gotten their new stuff yet. I know he is one and Blake Shelton is the other.
Surgeon got back to me finally. I am to manage the tachy and headaches with rest but still try and walk around. If this continues, then it needs to be explored surgically. So I am done complaining about this matter. No way I am going back under.
There is another song that I am listening to right now by David Nail. It is called Oh Mother and it deals with the depression that he suffers from. It is a beautiful song. https://www.youtube.com/watch?v=j01POMsqQGU
Back has been bothering me most of the day today. And my ankle too. I have taken my BT meds and some Zanaflex for the spasms. It helped a little bit. I am still in pain. I wanted to take a nap this afternoon but I kept on dreaming weird shit so I couldn’t doze off. I was too afraid of what I might dream.
I have been in a sucky mood for most of the afternoon and early evening. I just feel so depressed and the surgeon’s reply made me feel more depressed. I asked him if being on steroids again would stop the need for surgery. I really don’t want to go under the knife again. But I also don’t want to be walking around places with my heart beating rapidly and then become short of breath.
This song is by Luke Combs, one of my favorite new artists. He seems to capture the mood perfectly with this beautiful song in these times. Thought I would share it with you all.
I haven’t done much today. I have been resting and started a new book, well, an old book that I am rereading as I never finished it. It is called the Anatomy of Melancholy by Robert Burton. It is a classic text. It is old English and has a lot of Latin in it that is sometimes translated and sometimes now, which is annoying. I hate when people use Latin thinking people know it when they don’t. Drives me crazy.
Weather is cold and wet. Had to close my window as temps in my room dropped below 60 degrees and rain started to come through the window. Hated to close it but it was damn cold. Now it is a little warmer in my room but not too warm. Temps are just above 60. I had to put on thermal socks because my damn foot got really cold. With the steroids, I haven’t been in too much pain. I have one more day of being on them and then I know pain will be back. Shame that they can’t be used as a treatment for CRPS. It really helps calm down things.
My mother made dinner and that has been the second thing I had to eat today. My appetite has been low despite the meds. I am surprised I don’t have the hungry horrors. Back has been bothering me all day and I’ve just been feeling low. I am kind of nervous as to what the MRI will show. I hope I don’t have to have surgery again. That will really suck. I really want to keep PT at home as that has been helping me the most. I haven’t done the home exercises because I get around okay but it is good to have someone do them with me while they are here.
I am glad I have this blog to write my thoughts down. Sometimes it is a good thing and other times it can be bad, the thoughts I mean. I haven’t been in a dark, dark mood in a while. If I have it hasn’t been for long, thank goodness. I still get depressed but not suicidal. It is weird not being suicidal. I am grateful I am not but man, this is so new to me, after spending a year or more with constant suicidal thoughts. It was so overwhelming I thought I was going crazy at times. I don’t know what changed this. But I am glad it has changed. I didn’t think it would. Guess that shows that no matter how low you feel, you don’t feel that way forever, even if it feels like forever. Just takes some blessed time. I think I was suicidal for at least two years or so. Since my surgery, I haven’t been as depressed or suicidal. The voices have been quiet. I just been hearing my “normal” voices, the ones I hear nearly every day. I am on a high dose of paliperidone (Invega) now because I was hearing musical hallucinations. My psychopharm is aggressive with the voices. She has been from the get go. She also is aggressive with my depression. I find it a weird change as my psych was so conservative with meds. We would always be on the lowest dose possible to achieve effectiveness but there really wasn’t any scale or something we would go by. Just seemed like I had to wing things a lot. With the new psychopharm, I don’t have to wing it. I get treated for my illness with the hope that I will feel better. It has worked so far. I started to feel better after my suicide attempt in December. Weird how that played out. I still asked my treaters to ask about my suicidal stuff because of the one medication that I find lethal to me. They haven’t asked about it in weeks since my surgery and I haven’t felt suicidal so I haven’t brought it up. I probably won’t, given the circumstances. I really don’t want another hospitalization this year or ever after the last one. It was such a bad place to be in when you are so depressed and want to die but they won’t let you. I am not sure how the units will be now with the virus. I hear that they haven’t done social distancing or any other practice since it kind of negates wellness. I am sure it is hard to do when in an inpatient setting. But I am not feeling that down to think about hospitals right now. Hopefully I won’t have to go in any time soon.
I have my appointment with my therapist tomorrow morning and I hope that I can get up early to make coffee or tea. I need to wake up for the meeting because lately I have been so sleepy. I then go back to sleep afterwards. It just wears me out. But then a lot of stuff wears me out these days. I hate it. Just going up the stairs winds me every time. It is getting better though. I am not so winded unless I do both sets of stairs within a few minutes of each other. Then I am really winded. I need to go to the pharmacy tomorrow so if my meds are ready after the appointment I will pick them up. They are supposed to be ready tomorrow. The pharmacy has been a little screwy the past few days. I don’t know if it has been because of new staff or what but they have been slow as molasses getting things done. I had to wait for a three hours for meds one day because they screwed up the original order. They processed it under the wrong medication! I was not happy and complained about it because they should fucking read what the damn thing says. Makes me so angry. There is a difference between IR and ER. And it is in black and white so there shouldn’t be a mistake.
Wind is howling. I hope it doesn’t snow tonight. We certainly don’t need it!
“It’s ok to be on pain meds. Can we stop acting like not taking pain meds is some sort of moral success? Being in pain doesn’t mean you have an addiction. It’s okay to not want to be in pain. I’d go so far to say that it’s normal.” Lupie Linda
I feel like I don’t deserve pain meds because I’m a bad person. I sometimes feel evil so I feel that I deserve to be in pain. I also feel guilty about taking pain meds because I know there are plenty of chronic pain patients that don’t have access to pain meds anymore. I know I am dependent on my meds and though there maybe times where I take and extra breakthrough med here and there, I am not addicted/ Pain levels dictate how I take my meds. If it’s above a 10 I may take more than when my pain is a 7. Often times I will go about my business and pain levels will go from a 3 to a 12 in a blink of an eye. It’s at these times when pain is a 12, the here and there come into play. I feel bad about taking the extra pain med I need to calm down the level of pain I am in. I know what works, usually. The bad part is my pcp doesn’t want to go up on my BT meds, even though I think it will be beneficial for me. He wants to put me on methadone and I don’t want to be on it. The people I know who take it don’t get relieve of their pain while on it.
I sometimes feel that I shouldn’t complain about my pain to my providers because of the ping pong ball back and forth I get. Almost like pass the buck. Or I get the sorry you’re in pain there is nothing I can do for you. That is the one thing that makes me feel so suicidal. Doc knows I am in pain but can’t do anything for me. So I feel like a) I got to manage anyway I can with what I got and b) have the why bother taking anything at all if it isn’t going to help? I flip through a and b frequently. Usually it’s 3am when I cry uncle and take something for the pain because all the non-narcotic meds haven’t done shit for me.
The downside to trying to play catch up to the pain is I may look “high” as my lil sister has constantly pointed out to me. My eyes appear dilated to her. I will not feel high or drugged out. I won’t even feel good. I usually just feel nothing or “normal”. I hate that she judges me like this. It makes me feel bad and guilty for trying to ease my suicide level pain. I try going without pain meds when I am below a 10 but CRPS pain can change in an instant. The level 6/7 can quickly become a 12 or higher. I use numbers above a 10 beciase chronic pain doesn’t fit neatly into the 1-10 scale. Chron pain scale is 0 to 14+ (see photo of scale). Level 14 is unbearable pain where you cannot function and wish you were dead. My breaking point is usually a 12 though. It will last for hours to days when I am in a flare, especially if the weather is whacky like New England weather can be. I feel it when the barometric pressure goes up and down. I have kept a record of it and usually the barometric pressure of 29.5 to 30+ will increase my pain. I don’t sleep during these flares which only makes the pain worse to cope with. I have found that the higher my sleep deprivation is during these flares, the more likely I am to think of suicide and plan for ending my life. Once my sleep is some what back to normal, the suicidal impulses are lower.
midnightdemons7 
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