Category: chronic physical pain

What I started writing yesterday and stuff I did today

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

What I started writing yesterday and stuff I did today

So this is what I wrote yesterday:

I am so flipping enraged. Just came from seeing my pcp. He was interested in how I was doing with the med change. Jerk said he was extremely skeptical about opioids helping me at all. Well take this chickenshit, my pain is reduced 50% aside from flares, which nothing seems to help. He was glad he was wrong. But can you imagine the big “I told you so” if I got no relief? I can’t believe the ignorance. Totally dumbfounded and hurt I would left to deal with excruciating pain and nothing to treat it with when there is something to treat it. So anyone who says opioids don’t work for CRPS, THEY ARE FULL OF CRAP!! So I then tell him my back has been acting up due to weather changes. My lumbar spine and sacrum do not want to move. Asked if taking ibuprofen was ok and he says it has risks of heart problems and hypertension. But mostly stomach issues. I should use it sparingly. Why the fuck is this over the counter if it causes so many problems? And doctors prescribe it like candy or more potent NSAIDs like naproxen or diclofenac?? Idiot. I just rolled my eyes. I cannot believe this idiot is practicing medicine at a world class hospital.

Today I find out that he is worried about my sodium levels as they dropped again since the last time I had them checked. He is going to talk to my psychiatrist and has ordered blood and urine tests to rule out what is causing my blood sodium to drop other than medication. I wrote back to him and asked what the tests were (I am a lab geek, after all) and if the PCOS I have might be affecting my pituitary, thus messing up my blood levels. I don’t think I will get an answer tonight as I thought of this around 1900. He did tell me that if I felt ill to go to the urgent care.

I spent most of the day clearing off my bed so I can change my bed sheets. I had to do it in increments because my back kept flaring if I stood longer than 10-15 minutes. Then I couldn’t find my reacher on my bed so finally cleared off nearly everything except my office essentials like my journal, laptop, and book that I am reading. I made pancakes this morning and then had buffalo wings for dinner. I was so sleepy after dinner that I had to lay down. I was hoping to sleep but I couldn’t.

Tomorrow, I will be able to change my sheets. I plan on washing them and my blanket. I have another set of blankets that I will put on. They won’t be as warm as the Red Sox fleece I am using now. I think I am going to put the hospital blanket on and then the Red Sox. That should keep me warm and if I am too warm, I can always take it off. I have to keep my leg warm because the AC might make my foot cold. Plus I get cold and like to get cozy under the blankets at night.

I was feeling really down last night. Pain was elevated and so was my suicidality. I wrote a blog. When I finished it, I sent it off to a couple of suicidologists, including the president of the American Association of Suicidology because something she posted on Twitter bothered me and I had written about it. She tweeted me in the morning and we had a discussion but I could tell she wasn’t getting what I was trying to say. It amazes me that these people want to prevent suicide yet belittle the thoughts of those who actually live with chronic suicide ideation. She had written a study that had showed more than 132 people are affected per suicide. It was dispel the thoughts that Dr. Shneidman had that at least six people were affected. He said this but never studied it. No one knows where he got this number and he is deceased so we will never know. Her study was important. But what the bereaved suicide loss persons don’t realize is that saying loved ones will be hurt and others will be affected, some how guilt trips them into staying when they do not wish to live anymore. I was trying to explain this and we weren’t getting anywhere. Depression already caused excessive amounts of guilt. Add this information and it is overwhelming, which is what I was trying to get at but obviously wasn’t explaining right. She is a very intelligent person but I really think that lived experienced people and others who think of ending their lives might be too painful for her to deal with and so gets offended. I have seen it happen to me one too many times. Yes, it does make you stop and think of who you are hurting when you are thinking of taking your life. But then you (the suicidal person) have to wonder, is my suffering greater than those I love? And if this was a physical, terminal illness like cancer, would they still feel the same?

It just bothers me so much that people who are already suffering from huge amounts of pain, physically and mentally, still go on with their lives because they basically feel trapped. I know I do. I feel trapped by not want to cause pain to my family and friends with my death and the pain I already have that I was so desperately to end. It is tearing me apart some days, especially when the dawn approaches and I no longer have such intense feelings of ending my life. One of the suicidologists was glad I had made it through the night. She was the only one that said that. I am sure the others would have thrown my ass in the hospital if they could. I write a lot about my feelings because I don’t have a lot of support. It is also cathartic for me to write. If I lose this, for whatever reason, I know I will die. I think I even emailed my psychiatrist last night about why am I still around? Why am I still here. And will she let me go? I was half expecting a response or a phone call. I got neither. I see her next week so I know I will talk about it, least I hope to if I am not chickenshit. She sometimes scares me because she has this way about her that when she says something, I have to listen and “follow orders”. I have never not done what she said when she says it in that tone she has. She has known me for a long time. I respect her a lot and she respects me a lot. She looks up a lot to me because I have been through so much.

Next week is going to be difficult as I have a lot going on. But right now, all I care about is changing my sheets and reading Harry Potter as well as keeping track of the Sox. Oh, almost forgot, the blog that I wrote early this morning was chosen by some paper and published on their platform. Pretty cool!

Painsomnia and Midnight Demon Friday 22 June 18

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

I had started a blog on my laptop to publish yesterday but my brain kept getting foggy and couldn’t focus. I knew if I forced myself to write, it would come out crappy.

Now it is after 2 am. I can’t sleep. Midnight Demon is out. Has been since 10 but had no writing urges. I’m just writing now because I felt like it. I feel suicidal. Been planning for months and now it is almost time. I’m wondering where the weeks went. I haven’t done much other than look over my will. My pension is still wherever it is with my employer. I have emailed my psych that my death is inevitable. I asked her to let me go.

Pain has been decreased by 50% since my new longer acting pain med was started last week. But it does nothing for flares. I am not in a flare. Just pain that is left over from the meds. It doesn’t take all the pain away. Nothing will do that. But this pain is what is keeping me up. That and the thoughts of ending my life. It is like a monkey on my back. It goes away for a while and then comes back full force.

It is a familiar feeling. A part of me knows it will pass. Another parts truly believes this will be the end. I am tired of fighting this. I had made my decision 3 months ago. Now the 3 months is almost up. I extended the date due to circumstances beyond my control. Next week I will check out the location. I hope it will be suitable. I am still afraid I won’t go through with it. My psych might intervene. I don’t know if I will end up back in the hospital. I told her it was useless.

My hope level has been fluctuating a lot. My friend reminded me I’ve been in rough patches before and got through them. I didn’t tell her this was it. I feel so stupid. One of the suicidologists I know that is the president of AAS did a study on the effects of a suicide. In the study she found that >132 people are affected. If that holds true, I will have ~400 or more. And that just includes my online/high school/ co workers friends. Doesn’t include my humungous family.

I feel guilty about this. Today she posted saying that it was a reminder to suicidal persons as they often feel no one care or that no one will miss them. Makes me mad. I don’t want to cause pain to others yet why should I go on in torment of my CRPS and depression? I feel it is a guilt trip. A huge one at that. I stuff those feelings when I am deeply suicidal. Then when it lowers or I look at the people I love, I wonder how could I do this to them? I am in agony over this. It is truly hurting me. Call it ambilvalence. Call it selfishness (please don’t as that is NOT what it is but i don’t know another word). I just am so conflicted as to what to do. I can’t stuff them. I want to die. I need to die. My time is coming. Question is, to be or not to be.

Things that annoyed me and other stuff

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

Things that annoyed me and other stuff

I woke up around 0330 in pain. Took me a while to get back to sleep. I think it was around 5 when I did. I woke up next because of my med alarm. I took them and then my bladder had to go. I went downstairs and it was already muggy. I used the bathroom and brushed my teeth. I didn’t feel like showering. I know I need one but I am just being lazy at this point. I went back up to my room and fell back to sleep. I set my alarm for noon so I wouldn’t sleep late. That was for waste as my dumbass cousin kept calling me. He must have called like four times. I let it go to voicemail. I stayed in bed until it was 1230 and then got dressed.

I went downstairs and put my shoes on when I realized I forgot my insulated cup. Oh well. I didn’t feel like going back upstairs for it. I grabbed by bag and then went out. My cousin was pulling up and my mother was getting out of the car. I started yelling at him for calling so many times. He said my mother had bags and I needed to help my mother out. What was wrong with him?? He has no problems with his legs. He is just a lazy fuck that refuses to go up one friggen flight of stairs. I walked away after he said that I should help my mother and he asked where I was going. Fuck you. I put Taylor Swift on my headphones and went to the bus stop. Bus came because I got the bus driver that likes gas. She drives fast and you better sit or brace yourself once you get on the bus or you’ll go flying.

I ordered my Starbucks. I wanted a cheese Danish but the store was out of them. I had a coffee cake instead. After I ate, I wrote in my journal for a bit, but was not too focused. My thoughts were all over the place, making it hard to write them down. I used the restroom and then left for my therapy appt.

I got there and he was running late. I had so much to talk about. I told him about my cousin and what he said. Then started talking about how my father has been on my mind a lot lately. It’s been more than two years since his death yet I can practically remember every detail of the day he died and it plays at least unexpected times. I told him how I felt about not being able to do enough for him, but knew also, there was not much I could do to save a dying man. Even if I altered the DNR to get him fluids or other care, it wouldn’t benefit him. It might actually cause him more pain. We talked about how I felt about him and the abuse he did to me on so many levels. I nearly broke down at least three times but didn’t. I somehow kept the tears back. I don’t know how to process this. It sucks big time. He let me talk. He didn’t say too much. Told him how my uncle died, my father’s brother. I didn’t find out the truth about how he died until a few years ago, before my father died. I forgot who told me. It made sense to me though I didn’t say anything more about it to anyone. I was five when he died and really don’t remember him that well.

My therapist had to change our time for next week. So I have a double header next week. PT in the morning, therapy in the afternoon. Fun! I should be a fucking wreck physically. My mother called after therapy. I had just missed her call by a few minutes as my phone ringer was off. I called her back and she asked when I was going home. I told her I was on my way but it could be an hour or so depending on the bus. She said when I got home to tell my niece to come upstairs. I said okay.

The bus was late and I think something was wrong with the back doors as the driver had to get out of the bus to fix it or do something to it. I was hoping things went okay as we were a few stops away from where I was to get off. It would be a LONG walk if the bus was broken down. But whatever he did fixed the problem and I got off at my stop. I went to Walgreens to get some protein bars but the price went up. It was 2 for $3. Now it was 2 for $4. I didn’t have the other dollar and I wasn’t going to pay $2.49 for one. My friend told me I can sometimes get coupons for these things so I will check out the website she recommended.

I had dinner and then went up to my room to change. I was so tired. I was hungry again but thirsty too so I drank some powerade. I wanted to make some fried eggs and toast. That has been my kick the past few weeks. I took a shower instead. BAD MOVE. My back protested violently. I am still hurting. I had to shave my underarms so the extra standing just annoyed my back. My trimmer ran out of juice and had to be charged so it was the old fashioned way of razor and shaving cream. It took longer but was worth it. I then washed off in the shower until my back had enough. I think it was the fastest shower I ever took. Getting into my PJs was hard. My feet did not want to go through the pant legs. I was getting so annoyed. My back was ready to kill me. My legs are also hurting. My left thigh is beyond sore. I have one appointment tomorrow in the afternoon to see my PCP and then 4 days off of doing NOTHING. Least I hope so. My legs are going to need to rest.

pissed kind of day

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

Pissed kind of day

I woke up around 0500 in pain. I took my breakthrough pain because it was too early for my regular one. I stayed up for a little bit and then went back to sleep for about an hour and half when my mother woke me up to put on her compression socks. I was not happy. I put them on and then decided to go back to sleep. I set the alarm so I could make breakfast before leaving for PT. I wanted to make pancakes. Alarm went off and I didn’t want to get up. The alarm kept announcing the time. I was lying on my right side and didn’t want to roll over to shut it up. Eventually I did because it was annoying me. I laid on my back and after a bit changed to my right side so it wouldn’t hurt. My ankle was being a brat.

I went downstairs and saw that the bag that I had left on the table by the other set of stairs was gone and there was mail there. I asked my mother where she put the bag. I must have said it three times and she didn’t understand what I was saying so I starting yelling. She yelled back when she heard what I was saying. I got the bag and did all I could from slamming the door to the porch where she put it. I then got an umbrella because my back was telling me it was going to rain.

I went to the kitchen and made breakfast and coffee as I needed it very badly. I just hoped it wouldn’t make me sleepy. The egg looked really good so I took a pic and posted it. I usually don’t post my breakfast, just other stuff that I make like desserts or a kind of meal that I got a recipe for. I ate it while my coffee was brewing. I tried the new creamer. The fucking protective foil wouldn’t come off. I was getting so annoyed. Finally it gave way and I didn’t spill the container in the process. It wasn’t as sweet as the other creamer I used but it was okay. It did its job.

I grabbed the lid for the mug and then went upstairs to get dressed. My bitchy mother wanted me to mail something and go to the bank for her. Okay. I left and as I was walking to the bus stop, my lower back on the left side acted up. I had to take a break a few times to settle it down. I stopped where there was shade to put the Bluetooth on my phone and listen to my headphones. Then continued to the bus stop. The bus came and I rode to PT.

I had emailed my PT about how the home exercises were going. She said we’ll change things up a bit. She gave me three new exercises. The posture exercise was out and the knees bent clamshell was, too. She went over some weighted exercises to do with my upper arms and back to help my core. We had time after it so she decided to massage my hip muscle. We were talking and I asked her if my current problem was due to the nerve injury, cauda equina syndrome. She said it was most likely due to over compensating for the weakness after rehabbing because I walk fairly well for someone with having CES twice. She said she is very surprised I am able to walk as much as I do given my conditions. I said thanks. A few people in my CRPS support group have also said so. I guess between the high pain tolerance and not being able to sit still, I push myself to do things. I did that for three years before I couldn’t do it anymore. I knew once I was in the AFO at work I couldn’t work two jobs anymore. Even managing one job was hard. I guess if I could have cut my hours to maybe four a day it would have kept me working but I couldn’t financially do that. My health insurance would have been ridiculous and my mother would have had a fit for not providing enough for the mortgage.

I was feeling tired after PT. The bus was always a guessing game because I had no idea what time which bus was going to come. And there were no benches to sit so I had to stand while waiting. I think I waited 15-20 minutes for a bus to a station. When I got there, the bus was there for the one home. It kind of freaked me out because there was a carriage on blocking the passage on the bus and then people would stand by the entrance blocking anyone that came on. I just freak out when that happens. I don’t know why it gives me so much anxiety but it does.

I got home and then went to the bank before going home. I have done this for my mother a million times. The customer service person asked if I was my mother and I said no. She then went to the back to ask someone a question. She came back and said they would do this this time but next time my mother needs to do it. I asked why as I have done this before without a problem and she said it was because of the withdrawal. I said there was no money exchanged, the money was being transferred from one account to another. She said that was the policy and I got mad because my mother had done this before without problems. I guess it just comes down to who does the transaction.

I walked home and my ankle started acting up. I walked in and I heard my mother talking. Then I heard my aunt and I wish I wasn’t home. I didn’t want anything to do with my lunatic aunt. But my cousin was over with her 4 month old daughter so it wasn’t too bad, until I asked my aunt a question and she gave me the entire history of how my mother entered the country as she was in Italy at the time. UGH. She can never answer a question with a short fricken answer. The baby was even getting fussy. When she finished, I asked my mother what she was doing for supper. She said hot dogs and potatoes. I was like okay. I was hungry but could wait.

I went up to my room to cool down and rest my ankle. It was really angry. I took a breakthrough pill. I was playing on my phone when hunger got the better of me. My sister texted me to check on my niece so I went downstairs. My niece was okay. Then my hip started hurting me where the PT had massaged me. I emailed her to see what to do about it. I made dinner for my mother and I. It was hard getting around the kitchen with my hip hurting.

After dinner I went back up to my room and I swear I feel so exhausted. Like all the energy has been sapped out of me. I don’t think I will be listening to the Sox tonight. My leg is hurting so bad and I feel so depressed about it. I need to go out tomorrow to see my therapist. I hope this pain settles down. I might not do the home exercises tomorrow if my leg is hurting me. I hope a good night’s sleep settles this thing down. I am going to take my night meds early and call it a night.