2019May1

Trying an experiment. Seeing if I can go a month of writing, even if i only post a pic or something.

Pain has been with me all day. woke up at 3 am in pain and had on and off sleep until I got up around 1 or 2 PM. My days have melded together. Realized last night i took Tuesdays pills on Monday. It is the same pills so no big deal.

New med has helped decrease my pain but flares still happen though not as intense. Sunday into Monday i had insomnia was up 28 or so hours straight. Pain was intense for 20 of those hours. I was in a bad space. Was writing my psych like every couple of hours. Then I wrote something but I didn’t send it right away. Sent it after the insomnia attack and after I had a good sleep. Think I sent it last night. I am not sure. Anyway, she didn’t say anything. Apparently I sent her two emails with the same stuff. Oops. She wanted me to call her. I called and we spoke for a while. It was about my living situation and how I am supposed to be doing stuff but can’t because pain is killing me. She said she will write me a doctor’s note for my family to let me alone. It is sort of funny now but she meant it. She also doesn’t want me to kill myself over this. I have mixed feelings about this. Too deep to go into tonight.

Ankle went on me while I went to bathroom. Going up the stairs was so much fun. I barely made it to my bed. Both calves have been hurting so I put the heating pad on. It helped some. My right knee has been hurting most of the day. No idea what I did. Bet anything it is because of the balance exercises. Probably doing them wrong or too long.

Going to stop here. Will write more tomorrow. It is a goal.

Sunday Blog 28 April 2019

Sunday blog 28 April 2019

I had slept most of the day and woke up not knowing the day of the week it was. I have been having an awful last few days. Yesterday I spent the day in bed because I didn’t go to sleep till 4 am. I got into a fight with my sisters around 1330, which flared up my pain and sunk my mood so low I didn’t think I was going to survive. Today I am in the same awful mood. I had met with my psych Friday and she said I needed to be in the hospital but I told her I didn’t want to be. She stressed the word “need” again. I gave an explanation that I was not sure I could trust my family with my things while I was inpatient, I didn’t think it would help matters, and would only annoy me all the more. I remember my last hospitalization caused me more pain than it helped alleviate. Hell, the night before I got discharged, I was in a wheelchair as my ankle went out me. I had so many flares because even though there were no stairs, things weren’t exactly close. It was a walk to get from my room to the kitchen or group room. Walking several times a day hurt me and my pain flared up at night. I won’t want to go through that again, especially when I don’t have my meds by the bedside. I will be at basically the mercy of the nurse to dispense what she/he could. I also doubt with the new laws in place, I can get my pain medication like I can. I don’t even know if psych hospitals can prescribe pain meds anymore. I really don’t want to be admitted to find this out then be screwed for three days until I can be discharged.

Plus with my mother constantly being in the living room now, it woud be extremely hard for me to leave without her knowing. I mean if I bring down a big backpack it will raise some eyebrows. So I won’t be going in. I swore the last time I was discharged the only way I would be admitted would be if I failed at an attempt. I am close to attempting any day now but I only stop because I put time between me and the attempt. I am hanging off a thread right now and I don’t know when that thread is going to break. I got into another row with my mother. I had wanted to go through some stuff in my room but after that argument, my ankle pain returned. Seems like whenever I get frustrated and angry, my pain increases lately. Stress can cause a flare when you have CRPS and I have been stressed to the maxed.

I am seeing the social worker tomorrow. She is just a social support right now until I see a therapist, whenever that may be. I have so many worries right now. My friends have been great listening to me but I worry I will be too much for them. I am worrying the crap out of my psych. It was one of the first few things she said when I saw her on Friday, not like I haven’t given her anything to worry about. I sent her a message last night that I wasn’t going to email her anymore yet I wanted to today for some reason. I held off. I think I am just going to write on paper what I want to send her and then it will be out of my system. I don’t remember half of what I tell her and often have to read the sent message as I am not sure I sent her something and what it entailed. I know when it is bad when she calls me when she gets it. I paged her the other night around 9pm because my mood was horrible due to pain being really bad. I just have not been in good space since the end of March. Honestly have no idea why or how I am still alive as my suicidality has been up and down like the weather. I seriously thought last night I would end it. Only thing keeping me from doing it was being in my room. I know that sounds dumb but as much as I have animosity toward my family right now, I don’t want them finding me dead. My middle sister really needs to stop going off about me in front of my mother. I don’t understand why she just doesn’t say what she wants to in front of my fucking face. It’s not like I can’t hear her. She is screaming so I can hear her. Just because my door is closed doesn’t mean sound doesn’t go through. I am so sick of walking on eggshells in my house. I am damned if I do and damned if I don’t. And the stress of it is causing me so much pain. I think the new dose of the pain meds is helping now that I remembered to switch out the lower dose for the higher dose. I woke up one morning and was wondering why there was a blue pill in my box rather than the red one. I am such an idiot. Today was probably the first time in forever I woke up without serious pain. I am in pain now but I think it is only because of the earlier argument with my mother. Hope eventually I will stay at a 2 or 3. I know the pain meds won’t 100% take my pain away but at least it will be tolerable.

I am going to pack a bag just in case I need to go in the hospital. I am not sure where I will keep it. I don’t want to lock it in my room where my sisters can’t bring it to me if I don’t go in on my own. I got to be more vigilant about locking the door when I leave so no one does go in my room. It is my only haven right now. If I do decide to go into the hospital, it will have to be after Wed when my next shot is scheduled. I don’t want to risk missing a dose due to stupidity on the floor. It might take more than a day for all my meds to be worked out (hoping my pain meds won’t be one of them). I just hope one of my pillows can be packed in the bag. Hospital pillows suck.

A little big on Saturday

I have some things to write but I am in extreme pain and can’t think. Also had another stressful day with family. I don’t think writing how I feel will be appropriate as some “good samaritan” might send cops to my door.

Thinking of you all and will write when I can blurt what I can.

Tales of the Midnight Demon

I’ve pretty much have been in a flare the whole week. It has been go go go past few days. I was supposed to rest today but I stupidly ordered my groceries to be delivered today. I had used a different app, which I will not use again because of the 20 items I ordered, 13 were delivered, 1 item was supposed to be refunded but was substituted to another similar product I don’t like. So I have 3 bottles of Starbucks dark roast coffee. I will try it. If I don’t like it, I guess I will dump it. I have no use for it and no one else like Starbucks coffee.

I did an errand after my deliveries were put away. Got annoyed with the bank my mother uses. Every single time I go, there is a problem even though my mother put my name on the account. I hate this bank so much! Then I went to pick up my meds. I had to make two trips because one was ready and the other had to be pre-authorized by my insurance.

I came home from the 2nd trip and immediately in a flare. Both times I did not wear my AFO brace. My leg, which has been acting up lately, got really painful on my walk to the pharmacy and only got worse on the way back. I was in such a flare up I couldn’t bear to listen to sounds. This meant I couldn’t distract by listening to music. I just rested in agony. I took my pain meds and some gaba. I stayed on Twitter for most of the time trying to distract. I was also on Facebook. Nothing was helping the leg pain and I knew it was from walking too much. I must have walked miles in my house, going from my room to the kitchen to the living room and back to kitchen thousands of times in the past few weeks. I am not walking correctly. I overusing my leg muscles as well using muscles to compensate for the overused muscles. Only way to remedy this is to completely stay off my leg. This is hard to do because I cannot stay in bed. If I don’t feel well I can but I need to have coffee and eat so need to go to the kitchen as well use the bathroom. Now I really need to limit going downstairs.

As I was resting and keeping track of the game, the extreme suicidal ankle pain exploded. I so overwhelmed and intense suicidal ideations occured. I wanted to end things tomorrow (today). I was thinking of emailing my psych to tell her I’ve had it but decided to call her instead. I paged her and she called me back right away. We talked and I told her how dire I was feeling. I told her I had two suicidal pains around my ankle, one worse than the other. The worst one was why I was calling. She asked if I was going to act right away. I said no. She asked if I needed to be picked up and I said the ER is not what I need right now. We talked some more about the new med changes and how it will be a few days until I know if it helps or not. One dose isn’t going to help, though it sort of did. I told her I didn’t think I was going to be around for my niece’s graduation party. She said we will take it one day at a time. Then she said I needed to call her when I got up. So before noon, I will call her, if I am up. I said I would but it is almost 3 am so is probably doubtful I will.

My foot has been doing the dystonia thing again. It is part of the reason I am still up. The area where the extreme suicidal pain is still hurts but not as bad. My foot has swelled up pretty good where it feels like it is going to burst. My veins have popped up giving my ankle a bluish hue. The ankle bone is also been hammered by unknown entity. I hate bone pain so much. I’ve taken two doses of gaba. I am contemplating taking a third. If I am still up around 4 am, I will.

Today has been such a shitty day and is not over yet. A friend wanted to give me tickets to the Sox game last night. I was in a major sensory overload flare when I was asked and I had to decline. I really hated doing so because baseball is my love. But I knew walking to the park and finding my seats and staying for a minimum of three hours would really kill me after having a nasty flare up. I made the right decision and my psych agreed with me. She was saying no, no, no which was basically doctor’s orders. I am under her clutches again and I fear I am going to burn her out. I am so suicidal and want to fucking act but like I said in my previous blog, I don’t want to do it in my room. I was thinking of doing it Friday but it is going to fucking rain again. Fucking weather. Being pissed off about this is not helping. My psych asked if I was going to act in the next few days and I told her it was a coin toss.

I honestly have no idea if I am going to survive this year. I got the impression from my psych and I think I heard her say not on her watch or something to that effect. What the fuck is wrong with me? Why can’t I fucking go through with my thoughts?? I feel like such a fucking wimp. I am so annoyed with myself. If I loathed myself before, it is 100x more.

My psych is going to try her damndest to keep me here and I don’t think pushing her away is going to work. I told her I only called her because I knew if I emailed her, she would call me. I really needed to talk to her or someone, well someone that i trusted. Right now she is the only person I do trust. I can’t risk telling someone else my dark thoughts. They will freak out and things will be bad.

I am falling asleep so will end here.