Category: chronic physical pain

more thoughts on my blog

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

More thoughts on my blog

A reader emailed me and I thought about what she said. This is my blog and last time I checked, calling someone stupid wasn’t breaking any laws. So on this note, I have decided to keep my blog open, not password protected. If that monitor person wants to continue reading my blog, there is nothing I can do to stop them. I do know that my stats seem to go up when I post so even if I don’t know who you are, I know you are reading.

I’ve had a horrible day so far. My middle sister has been cleaning my mother’s room. When I got out of my room to take a shower, she said that I had to go through my stuff so she can move her things there. I also had to move the stuff in the living room so she can also move her stuff there. I took my shower and found that the shampoo bottle that had a pump on it, she threw away because the bottle was empty. I was so fucking pissed. I called her an asshole and she got pissed. I don’t care. I am tired of her thinking she is the only person living here and has to make the house the way she wants it to be. I got really suicidal after our exchange. She just doesn’t realize how upset she gets me, like I don’t matter at all. Yesterday she left crap on the stairs, which made it hard for me to go down. I really don’t want to fucking fall and she doesn’t get that my balance is off. She also placed a bin right at the bottom of the stairway, which I kicked out of the way. I got so mad. I texted her, in a neutral way, and got no response. I have no idea if she has blocked me or what but every text I send her, she doesn’t respond to anymore. I sick of her shit. I emailed my psych to let her know what was going on. After the disaster of a family meeting via phone, I really don’t know how to get through to the dumbass. Yet she has the audacity of calling me selfish. Such a projection.

After my shower, I made something to eat. My foot started bothering me but I still did what I had to do. By the time I made it back to my room, it flared up big time. My foot and ankle are competing as to who is going to hurt more. I so want to nap as I have been up since 0630 but I really don’t want to. Will be hard to anyway as there is so much light in my room due to my window being open. I have a hard time sleeping when there is light in my room.

Never had a nap. Just had dinner with my mother. I made hot dogs and beans. My foot wants to fucking kill me. I hate it when simple things cause me pain. You think I was walking miles. Speaking of walking, I really need to get my AFO (ankle foot orthotic) adjusted as my foot keeps slipping. I think I have a bit of atrophy plus with the weight loss, I don’t think it is fitting right. I hate that I gained about 10 pounds while in the hospital, mostly because I was eating three meals a day, but they were huge dishes. I tried to eat a salad with chicken or just a turkey sandwich but it wasn’t always possible because I would forget to fill out the menu for the next day. Sometimes I would skip breakfast as they served eggs at least every other day and I don’t like them. I rather make it. I am just picky like that. The rest of the days they had French toast, which wasn’t bad but it was filling. Since being home, I have been having much smaller meals at least twice a day. Yesterday I just had steak and then a protein bar because I was in too much pain to go downstairs to make something. I forgot how painful stairs were.

I got to fill my med boxes for the week. The doc in the hosp increased the Lamictal and I think it has finally improved my mood somewhat. I kind of feel like what I was before I was in the pit of doom. I am just more tired and on a “day” schedule. I went to bed early, or tried to before pain kept me up till at least 1 am. Then I woke up around 630, only because I had to pee. I am glad I woke up because I leaked. Both my pjs and underwear were wet as I didn’t wear a diaper. I bought a much comfortable brief style while in the hospital because they didn’t have a good kind. I should have brought my own but didn’t think I needed them. Now I know better.

Neil Gaiman’s Good Omens came out the end of May. I got it free because I am an Amazon Prime member. I downloaded the episodes to my Kindle, but I still haven’t watched it yet. I keep meaning to but pain has been a chief distracter. Usually watching a movie or something helps but I don’t have the attention span lately. I can watch short videos and then I get bored if it is more than 10 minutes. I think the only thing I can watch for longer is the Rachel Maddow show. I haven’t watched it in a long while because it was just annoying me. She seems to say the same thing in three different ways over and over. Then she goes on only to come back to the original question or point. I had to take a break and haven’t watched since. Maybe I will watch one episode of Good Omens later tonight, if my pain doesn’t get worse after I do my med boxes.

thoughts on my blog, input needed

by Midnight Demon, posted in Bipolar Disorder, blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Thoughts on my blog

I have been discharged from the hospital. I am paranoid that I am being monitored by someone at the hospital on what I write. I am not 100% positive of this because my stats views have gone back down to there regular numbers. Either way, it got me thinking about how to proceed.

For those that read my blog every day, I would like your input. You can give it to me via my contact page or if you want to leave a comment, that is fine too. If you are a close friend and follow me on other social media, feel free to contact me there as well. I am thinking of password protecting my blogs going forward but want my readers to read them. It would be the same password (unless I feel that it contains information that I only want some people to read. These posts would most likely be of suicidal nature that I don’t want to freak someone out and call the cops on me.)

Let me know how you feel about this. I know that my readership will most likely be down, but I need to do this because I still want this to be my outlet for my frustrated feelings, anger, and depressed thoughts as well as my suicidality, which is why I created this blog in the first place. I know I could just write some where else these “toxic” feelings but it is hard as this has been my source of support and some of it does help people in knowing they are not alone with chronic pain and depression and suicidal thoughts/feelings.

I have protected my posts on Twitter. I am not sure anyone can see them anymore. I know that people that follow me cannot retweet what I write. I really hated doing this but it will only be for a short while when I think I will be free from being monitored. I am really upset over this intrusion of my venting and it being used against me, like there are only nurses at this particular hospital and none of the other hospitals in and around Boston. This is how narrow minded this doctor was and he had the gall to call me a “Trumpian”. This angered me so damn much I had a breakdown after our meeting. I couldn’t stop crying because I was so angry and frustrated. One of the nice mental health workers came into my room to talk to me. She didn’t know exactly what was going on but tried to reassure me this didn’t affect future care at the hospital. I think it is so stupid. I emailed my psychiatrist, who probably just blew it off as me venting steam. I am not sure if the doctor emailed my psychiatrist and told her what I was writing. I would have filed a complaint but usually that doesn’t get anything changed. He was one of the higher ups so my complaint would most likely be thrown in the trash and my record possibly flagged as not to be admitted anymore at that hospital, which is fine with me.

The day before discharge, I had a meeting with my sister and social worker via the phone. OMG it was so fucking terrible. My sister basically verbally abused me. I won’t repeat what was said. I just felt like no matter how much I tried to tell her how much pain I was in and how I needed to recover afterwards, she didn’t hear me at all. She wanted me to go through my stuff while I was recovering from my appointments or anything else that caused my pain to keep me up all night and just stay in bed. I felt so horrible after the meeting which was the same day I was spoke to about my blog. I was just waiting for number three incident to complete the three’s. Thankfully it never happened. I was in so much pain though from being emotionally tapped out. Since I have been home, I have not seen my sister. She asked my mother if I was home but did not come to my room to even say hi to me and her voice toward my mother was kind of testy, like I didn’t belong here at all. I swear she is just like my bastard father. She called me selfish but that is just a projection. The social worker really understood what I go through at home. During the phone call, I wanted to hang up so fucking bad. I wanted to talk to my sister about her use of pronouns but I didn’t think it would be worthwhile. I had an agenda but it totally backfired as I just had to go through my stuff no matter what or how I feel. I really feel unwanted.

So for those reading along, please let me know if you would be willing to read my blogs that are password protected or if you just want me to write like I have been even though it might ruffle some feathers at the stupid hospital I was at.

2019May13 Misery and Insomnia Continues

by Midnight Demon, posted in Bipolar Disorder, Chronic pain, chronic physical pain, CRPS, depression, mental illness, mood disorders, painsomnia, physical pain, psychache, suicidality

2019May13 Misery and Insomnia Continues

I barely slept last night. I was up till around 0530 because my ankle decided to go up to a level 12 at midnight and stay that way most of the night. It went down to an 8 when I woke up around 10 but after I brushed my teeth, made lunch, washed my dishes, and folded my bedding, pain shot back up higher. It is now around a level 13. I am so disgusted.

I was so frustrated and had bad urges in the early morning hours. I was in such despair. I realized around 4 am that if I go in the hospital, I am not going to have my meds at my bedside. I would have to walk to the nurse’s station to get meds and then walk back to my room. Walking is not a good thing when you are in a fricken flare. So I emailed my psych this and haven’t had a response. I sent her another email asking her if she is going to force me in the hospital. I am done with messaging her today. Either she responds or she doesn’t. I told her I can talk to her tonight or tomorrow, or the rest of the week. I don’t care but I am not going in the hospital. It isn’t like being on a psych unit you have a call bell to have the nurse come to your room. And because the nurse needs to scan your wrist band to give out meds, it is just not a good situation for me.

I am fricken exhausted. Past two nights I barely slept more than 8 hours. I am running on fumes. I had coffee because I needed it. I hate this is another day of not being able to do anything in my room. I haven’t done my PT exercises and don’t care to. I have been doing the calf thing trying to get it loose. I have not used the new band for the foot exercises. I am just so frustrated I don’t want to do a damn thing. I have been doing the foot thing where I am trying to get my foot to be flat. Because my calf is tight, my foot is always bearing on my toes rather than be flat. I have been this way for years so I don’t think that is going to change. I tried it while I was on the bus and train Friday and it was killing my muscles. I am just not used to it. I try and hold it for a little longer.

My psych just responded and wants me to call her tonight or tomorrow morning. For some reason I am scared. Even though I have known her more than half my life, I always fear she will throw me in the hospital and throw the key away. I know this irrational. So I will call her later. Rather face the music today than tomorrow. I will be a nervous wreck if I wait till tomorrow morning.

To the person who commented on my blog yesterday, I hope you are feeling a little better today. I know you are probably hurting a lot. You will get through it even though it might seem impossible right now. Hope you are continuing to read my blog so you see this message.

I took some gaba to help with the pain. Not sure that was an good idea if I got to talk to my psych tonight. Last night I was a little dissociative before trying to sleep at 130am. I have been doing anything and everything I can to control the pain. It most likely is flaring due to the weather. Temp dropped about 14 degrees last night. I so cold. I had to put another blanket on my bed because I put my fleece one in my bag I was planning to take to the hosp. I still am hoping to be a free bird this week. Not sure yet. Will find out when I talk to my psych tonight. Hence why I am scared. She very insistent Friday when we met. I know she is right but I am getting upset on how it will be and it hasn’t even happened yet. A friend said to “let it work” but I am very sure she has never been in the hospital recently, or at least where I live. If I had a therapist, maybe things would be better. The social worker got back to me about the therapist situation. Unfortunately the director is in Africa for a few weeks so she doesn’t know what is going on until he is back. Wonderful. Just reinforces the notion I am a hopeless case no one wants to take on. Other might be helped but after 28 years of getting help, it hasn’t worked out yet for me.

2019May10 worries on my mind, pain in my heart

by Midnight Demon, posted in Bipolar Disorder, blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide

2019May10 worries on my mind, pain in my heart

I saw my psych today and the first thing she said to me was “have a mustache.” I laughed. I had taken a selfie while at the bus stop and when it popped up on my timeline on FB, I really noticed it being darker than it was even a week ago. Sometimes it is the small things you don’t notice right away. I sort of have been in a gender incongruent/dysphoric mood today as I feel like my breasts are a thousand pounds each. Also feeling bloated doesn’t help. I am not sure why I am bloated as I haven’t eaten gassy foods today, unless it is leftover gas from the burrito I had last night. I am just uncomfortable with my body right now and I don’t like it. I loathe myself so much right now.

My appointment kind of went as planned, with the exception of the hospital being my choice. She is insisting on me going in the hospital next week when my sisters come home. I told her to please find out of the psych unit prescribes pain medication because if they don’t, there will be problems. I most certainly won’t be going in if I can’t have pain meds. I am to call her Tuesday so she can find out about beds as we sort of agreed on a Wed admission. I honestly don’t know if things will be better by then. I doubt it as I am getting closer and closer to an attempt. We didn’t discuss the means, thank god. But she is not letting this get worse as it already has been.

I have already packed a bag. I just need to see if I packed shorts because I don’t want to be hot as the temps have been climbing up. I also need to make sure I have extra underwear as I have been leaking a lot more than usual lately. The increase in the pain meds have caused more retention than I expected. I am still hoping it will level off but who knows when that will be. It has been a few weeks since I started the new dose so maybe a few weeks more as my body adjusts. Course this also goes with how many breakthrough meds I have been taking as that also causes retention. I honestly don’t get the signal to pee until I am practically ready to burst. This is due to the nerve damage caused by cauda equina syndrome. Even though it has been more than 10 years, I still have damage that is permanent.

After I left my psych’s office and was on the way to the train home, I got hit with the biggest heart ache. It hit me so hard, I could barely breathe. It has been bad like this the past three or four days now. I really don’t know what brings it on. But I guess that is the nature of psychache, just comes on when you least expect it. Then when I came home and got into my PJs, my damn ankle exploded in pain. Pain got worse as I have been typing this blog. I was getting hungry so just had a protein bar. I was going to have Nutella on a flour tortilla but doesn’t look like that will be happening. I hope I can sleep tonight. My psych was astounded when I told her I had 5 shots of espresso. I can handle it, though I probably should have had four. I don’t think it will keep me up as much as the pain will. I am already experiencing sensory overload as noises have been bothering me. My mother is playing her dice game in the kitchen. I swear I’d like to toss them in the trash one day. Fucking hate the noise!! Nothing worse than hard plastic hitting glass. And she seems to be playing it whenever she is in the kitchen now, with the blasted TV at full volume. I just want to die and I know the night is only going to get worse between my psychache and physical pain.