Tag: complex regional pain syndrome

exhausted just from doing little things

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

Exhausted just from doing little things

I had a hard time sleeping last night. Pain was part of the problem. Every time I got comfy my foot decided to scream in pain, no matter which way I moved it or had it placed on the pillow. It would settle down and then when I did fall asleep, it would wake me up a few hours later. So around 2 or 230 I took some melatonin. I slept till around 7, took my morning meds and fell back to sleep around 8/830. I only woke up once but then went back to sleep. Then someone called me and that woke me up. It was my eye doc. I have been trying to see if one of the other docs can redo my eye exam because I wasn’t satisfied with the doc I saw a few weeks ago. I had a hard time seeing out of my right eye where everything was blurry and the doc just rushed through the exam, not taking the time to make sure I did see clearly. It pissed me off.

I got up and decided I needed coffee. I had to make it using my French press as I am out of iced coffee. I thought I could make it but it didn’t come out good. I think I didn’t use enough coffee as it tasted weak. I know for next time. I made something to eat while half a sleep. I kept going back and forth in the kitchen getting things while making sure my eggs didn’t burn. I made my egg burrito as that is all I want to eat these days.

After I ate, I decided to shower. It is cool today with low humidity. Not going to be like this tomorrow so I took advantage of it. I showered and shaved. I got razor burn on my armpits. I hate that. My back didn’t give me too much grief but when I came back to my room, I was fricken exhausted. I want to go back to sleep but fear that will make things worse for the night. I weighed myself in the bathroom scale. It said I lost five pounds. I didn’t think that to be right, though this is the second time it has said this. I used my digital scale when I went upstairs and I guess it was close. I was really only two pounds less than what I was last week. My eating hasn’t been consistent. If it hasn’t been for the burritos, I probably wouldn’t be eating at all.

I am feeling pretty numb. I guess that is a good thing for right now as I got so much on my mind. My mother asked again how my room was coming. I wanted to blow off on her but I told her I threw my back out last week and I wasn’t going to do that this week. She said I hadn’t been using the bins I bought. Well, duh. I haven’t done anything since Friday and I don’t really plan on doing anything this week. I really don’t want my back acting up again because I have four fucking appointments next week. I am going to try and see if I can move up my pcp appointment to an earlier time just so I will have time to see the therapist without a problem.

Got a notification from WordPress. Today is my 7th Anniversary of this blog. I have come a long way since the early days of my writing on here. Sadly, depression and pain has slowly take the joy out of it but I still try and crank out a blog when I need to or when I don’t want to (that is always harder). Today will be the second day in a row in a long time. I need to get back into a routine of writing again but it is so hard when dealing with chronic pain that just saps your energy and brain cells. There have been days I want to write but just cannot for the life of me get the words out. I hardly am writing in my journal anymore for the same reason. Sometimes, if I have time, I will write in my day journal at Starbucks but most of the time I am on my phone, drinking my coffee and then be rushed to leave because I have been misjudging time so much. Plus the bus take a little longer to get to the station because of the detours. Getting home has been more difficult than going out, even though I have two buses at the Square now. The schedule sucks big time and is worse on weekends. By the time I do come home, I don’t want to do anything. I barely want to eat or drink. I just want to rest in the cool air. I am just exhausted and sometimes it will only be 3pm. I need a nap so will stop here for today.

got to keep tabs

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

Got to keep tabs

Last night I was in a rough spot again. Pain had been bad yesterday, so bad that I dissociated on the way home. One minute I was at North Station and the next I am at the pharmacy. I have no recollection of how I got there. Pain was too intense I didn’t even have a number for it. All I know is I felt myself floating above me the whole time since leaving the brace eval to get my AFO adjusted. They adjustment felt good except the figure 8 strap that goes around my ankle to keep my foot in place. It is annoying the sensitivity I have in that area. Pain kept on going higher, I would dissociate, it would go down and I would be suicidal.

I sort of noticed a change with the way the pain happens. Intense pain would hit and I would become suicidal. Next time it hit, I would then plan on my escape because the pain was so unbearable and life was not worth living, at all. With this change, the urge to act is getting stronger. I realized last night it would be only a matter of time before the intense pain would hit and I would act on my urges if I had the means to do so. I had emailed my psych about the dissociation and how I either was going to pass out from pain and instead dissociated. I honestly have no idea how I got home, I wrote to her. Then to make me smile, the zoo I follow for giraffe pics showed the newest giraffe, Azizi, who turned four months old yesterday. She wrote back saying she didn’t know I liked giraffes.

Later that night, I thought I would reply to the email and then tell her the situation with the means and how close I am to acting on it when my pain is out of control. I have no real stop gap measure other than to email my doc like I have always done. Sometimes I will page her if I need to but I am not sure the pager is working and because most of the time this happens at night, I don’t want to call her late. I was hesitant in sending the email and I told her I would be meeting with the therapist today. I had no idea if I would be able to tell her this stuff. I get scared when talking to new therapists about my suicidality because some of them just don’t know how to deal with it and just send you to the ER. Around 2 am, and reading the email a fourth time, I sent it.

I didn’t have a response when I woke up so I figured she had read it but wouldn’t respond to it. I woke up late, like literally have to run out the door to catch the bus late. My bowel can always be counted on to stop the rush, which meant I couldn’t wash my face or brush my teeth. Seeing as yesterday I had somehow had a piece of shit stuck to me for hours I couldn’t fucking feel because of CES, I made sure I wiped good and pushed to make sure all the shit that was going to come out, did. Today turned into shit day as by the time I got to the bus stop, I was needing to go again. I wasn’t going to miss the bus because that would mean missing my appointment. There were no other buses coming for another hour which sucks. My stomach settled down a bit by the time I got my espresso. I didn’t have time to eat something. I got to the train station and had to go when I got to the hosp. I had a half hour before seeing the therapist so plenty of time to hopefully empty my bowels. Was not the case because by the time I got to the building where the therapist was at, I had to go again but there was no time. Luckily I was able to hold off the whole session without having to excuse myself.
The session went ok. We talked more about CBT and I showed her the book I wanted to lend her. She said her reading time was limited so she didn’t want to take the book. She asked what was specific in the book to work on and I said the CBT stuff was over my head as there was very little I knew about it other than the basics, which after 25 years, I barely remembered since psych 101. She explained and we went over things. I told her I needed a stop gap measure between the intense pain leading to suicidal thoughts that lead to planning and is leading up to acting. She had some coping stuff like putting an ice pack on the back of my neck. I could do that. I actually had that during one of my hospitalizations when I was in really bad shape. Somehow we discussed the crisis response plan that I have in nearly all my journals (only exception is the night journal I am currently. I don’t have it there because there is a strap and I am scared some idiot in the hosp, should I bring it, will treat it as a safety issue and take it away from me). She said this was good. I said yes it is but I need to be held accountable to actually using it because I can skip the steps and go right to crisis mode, which is calling my contact or my therapist/psych or even going to the emergency room. Plus, I don’t think I am ready for it as I get too overwhelmed to think about writing alternatives to my suicidal thoughts. I said the “stepping back” might work for me, which I have been trying. It hasn’t been easy but I try. She did say a lot of the stuff is going to be based on how much I do. Hence why I have avoided CBT for the longest time. I sort of want a quick fix and sometimes just talking about things is that fix except when I don’t get validated for what I say.

On my way to my appointment, my psych emailed me. When I was riding on the train, I got to read it. She said she wanted to talk and would call me in the late afternoon. I said that is fine as I should be home by then. She called a little after 1900. I gave her a brief update on things. Told her I have been having a hard time keeping up with my blog. She said that was okay as I didn’t write every day. I told her it is now more than that, like 4 days or so before I write. I told her I haven’t even been writing in my journal. I have stuff to write but nothing is coming out. She seemed kind of worried about this but didn’t say anything. I told her about the means and how I plan to have someone hold it for me. I just need to figure out logistics. She asked if we can talk next week. I said okay. That is when she said she needs to keep tabs on me, in her professional “motherly” voice. I said don’t you always?

garbage in my head

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

Garbage in my head

I’ve had a lot of stuff happen since Friday. I did way too much in all of the activities I did on Friday that Saturday I could hardly move. My back had started acting up Friday night and woke me up with severe pain early Saturday morning that I really couldn’t go back to sleep. I was having a lot of PTSD where intrusive memories would come in or a video of all the events leading to my first cauda equina syndrome would play in fast forward. I had emailed my psych around 10pm and got a response. She said she was sorry and hoped that tomorrow would be better. I didn’t respond because I was hurting and drugged up too much. I know I responded when I woke up around 0730 or so. If she could decipher what I was saying, all the more power to her because I had no idea what the hell I was trying to say. I haven’t emailed her since. I have been in too much pain. My scar hurt so bad I thought it was going to burst and there was like a two inch area from each side of it going in a square down my back that hurt so damn bad. I’ve had back pain before but never like this. And my lower back was all screwed up as well. I tried putting lidocaine patches on them and it didn’t last an hour. The adhesive was burning me. I had nerve pain in my thigh all weekend. I kept putting lidocaine patches on. It helped a little but sucked when I had to take the patch off. Yesterday was a little better but pretty much the same as Saturday. I also had accidently peed myself without realizing it. So had to wear a diaper. I think the overload of the nerves just had enough. That one day of activity has made the pain so much worse. My foot hasn’t stopped hurting me since Saturday morning. I don’t know when things will calm down again.

The sucky part is that when I cleared my bed off to change the bedding, I had my eyeglass case that held my prescription sunglasses in it. I have no idea where it went as the case is no longer in my backpack or any visible place in my room. I might have placed it in another part of my bag but we’ll see. I found another case with a pair of sunglasses in it. It is not prescription but I guess it will have to do until I find this case. It might have fallen behind something or I put it somewhere “safe.” I don’t know. I just need to find it. I don’t have the money right now to buy another pair of prescription sunglasses. I might have to buy the cheap clips you put on the glasses. Not ideal, but at least it will save my eyes from the sun’s glare. I know I will find them when I am not looking for them.

Tomorrow I have an appointment with the brace clinic at one of the rehab hospitals in Boston. I am hoping they can either give me a new AFO (ankle foot orthotic) or at least adjust mine so that it doesn’t keep sliding when I walk. I have lost weight and I think my calf has atrophied a bit since I got it almost eight years ago. When I was re-evaluated about three years ago, they didn’t want to do anything because the insurance wouldn’t pay, which is total bullshit as I wasn’t on the insurance I am on now. I really think the place was not the best to go to as the PT and orthotic guy just seemed like they didn’t know what they were doing. I went to the pharmacy today and as I was walking back home, my back started seizing up on me. I hope I can get to this appointment without it killing me. I have therapy the following day. Why I decided to pick Wed instead of Thurs, I have no idea. That is total stupidity on my part.

My foot pain just went back up to a fucking 12. And I don’t even want to take a breakthrough med for it. I should but I feel so hopeless I don’t see the fucking point. I don’t even know how many days in a row I have been in a level 12 or higher pain. I am instantly suicidal and thinking of the best way to end it. I won’t act on it but fuck I so want to. Like why do I have to go through all this pain? I am filled with anxiety right now. I know my night just turned to shit. Sox haven’t been providing too much distraction these days. They had a 5-0 lead and now they lead by one in the 3rd. So typical of them. Ugly Ricky is pitching. He hasn’t been pretty all season. Actually, the only pitcher that has been showing some improvement is Eduardo Rodriguez. He has the most wins, though his ERA is higher than OverPrice. I can’t listen to the game anymore because I never know if the sound waves are going to hurt me or not. I am listening to the radio on my phone that is away from my leg. But that doesn’t mean anything. The air waves can fricken bother me. I am not in sensory overload yet, but that can happen quickly. Part of the CRPS (Complex Regional Pain Syndrome).

Since the afternoon DJ on the country radio station I listen to left, the one that does the evening has I think moved to that spot because there is another guy filling in the evening. I have no idea who he is. I haven’t listened to the station in a long time. Mostly it is because the app is finnicky. A message or if I open another app, it will shut off or it will close on its own. It is annoying so I pretty much stopped listening to it or will listen to it for short periods.

I weighed myself this morning and I am 3 pounds heavier. I am okay with this, only because I am eating again so I knew I was going to gain some weight. Saturday as I couldn’t move and pretty much slept all day, I didn’t eat or drink anything the entire day. I think I was just drinking what ever I was taking with my meds. It was the roughest day for me as I was in so much pain.

Sox are now leading by 4 in the 3rd. Maybe they can break it open. But I won’t hold my hopes up, just yet… I have attached the chronic pain scale so you can have an idea of what kind of pain I deal with on a daily basis.

I got my head in a mess

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

I got my head in a mess

Today has been a rough day. I hardly got any sleep last night. I went to bed around 0530 or maybe 0630, I don’t remember. I know it was late (or early) enough to take my morning meds so I didn’t have to wake up to my med alarm a few hours later. I woke up about an hour after my med alarm would have gone off, around 1030. I didn’t get up right away other than using the bathroom. I wasn’t in too much pain but it was friggen so damn hot and muggy in the house. An hour later, I decided to get some coffee. I didn’t want to try and go back to sleep. I had a hot cup of coffee because I am running low on my ice coffee. I have about a half a cup left. I had a pop tart with it but I couldn’t finish the second one (there is two in a package). I had to go to the pharmacy to get my meds. Then I figured I would make some breakfast burritos and then maybe change my sheets.

I went to the pharmacy and when I came home, I was soaked with sweat. I had to change my shirt. I had the AC on so I cooled down before deciding what I was going to do next. My mother said she was going to take the bins out of the boxes and break down the boxes. I said ok. After I cooled down, I broke down the box with the bin that was outside my room in the hallway. I had a good time using the box cutter to cutting up the box. I then threw the stuff downstairs. I realized I didn’t have enough cheese to make the burritos so I had to go to the store to get some more. I called the butcher shop and checked the price there. It was a good price. The next bus wasn’t for another half hour so I put all my bags into the bin that was in my room. That cleared up some space. I changed into a tank top and I was going to wear it to go to the butcher shop.

I went to the bus stop and as I was waiting, my nephew drove by and gave me a ride to the Square. I went to Starbucks and got an iced coffee. Then I went to the butcher shop and the little grocery store that was across the street. I didn’t plan on going there but I wanted to check the price of the cheese. It was expensive so I got some roast beef and turkey bacon. I also got some more tortillas as there were only a few left for the burritos.

I came home and there was someone in the bathroom. I so wanted to shower as I was soaked again. The T and the nerve damage is causing me to sweat so damn much. I can’t stand it. I have been trying to drink fluids throughout the day but I am not that thirsty so it is hard. I sort of have to remind myself to. I cooled off for a bit then when I was, I decided I was going to take a shower and then make something to eat. I bought burgers yesterday and made an awesome one with turkey bacon and pickles. I made the same tonight, though I didn’t cook the burger too good. It was really rare. I knew I should have let it cook for a few more minutes but I was hungry. Always happens. It was really good anyway but I couldn’t finish it all.

I just finished the burger and cleaned up the kitchen a bit. I still am buzzed from the coffee so I think I am going to attempt to change my sheets. I don’t think I can take another night sleeping with just a blanket on. I need to put a lidocaine patch on my thigh though. While I was at the deli in the grocery store, the guy there was lazy as he didn’t want to change the labels on the weight things. All three needed to be changed and when he realized this, he took his blessed time trying to find labels and change one weight thing. I must have been standing at the counter for at least 20 minutes while this was happening. When I went to the bus stop and finally sat while waiting, my thigh pain was so damn bad. It flared up again while I was showering. I am not fucking happy about this. My back has been acting up for most of the day while doing shit. Resting has helped but it is still sore. I really want to change my sheets but think I will have my mother put at least two lido patches on my back so I can get things done. Otherwise tomorrow I may not be able to move.

Sox are finally playing tonight. I HATE the All Star break. They were off four fricken days. I missed baseball so much, well Sox baseball. Tonight they are playing the Dodgers, the team we won the World Series to. I feel like tonight will be revenge and I am not looking forward to that. Game is in an hour so if I want to do the last two things of the day, I better sign off now. Till next time.