Tag: disability

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.

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.

Pit of Doom

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

Pit of doom

I didn’t think it was that long a period between blogs but I guess I am writing every 4 days or so. I don’t like it but some days it is so hard to get my thoughts together. I am missing the hell out of my psychiatrist even though it has only been two weeks since I last saw her. We have been keeping in touch through email but it isn’t the same thing. I went through the email communication while she was out during her hip surgery and it was torture. I didn’t see her for about 3 to 4 months while she was recovering. I seem to be emailing her at least twice a day, more if there is a response. I just miss her so much.

In the meantime, my mood has blackened. The suicidal mood that I was in in April seems to have returned. It isn’t quite as deep as it was then, but it is slowly getting worse. I am 100% sure the stress of being home and arguing with family nearly every day or every other has significantly contributed. I honestly don’t feel like I am wanted yet I am expected to do things even though my pain is through the roof. Sunday my youngest sister, who I thought was on my side, came up and put my clothes in the bin it was on top of, all without asking first. I did not want them in the bin because I do not want them smelling like plastic. She said she would throw in some dryer sheets. I got so pissed. I sarcastically thanked her and said it is going to hurt my back bending to get my clothes. She said I was being mean and to use my knees. Then she tells me to live my life, storms back up here and puts my clothes that were in a neat pile before, out of the bin in a messy fashion. I was in tears the whole fucking day as my pain just went through the fucking roof I was so upset. Later that night she calls me and I didn’t answer. She calls me a baby and tells me to be an adult. I say you tell me to live my life then call me a baby? Then she goes on about how living in a “mess” is unhealthy. I say I am not dead yet, nor have I been seriously ill. She then calls me selfish and I say good night. We haven’t spoken since. Last night they were having another argument with my mother, and again my fucking middle sister said to my mother “she wasn’t getting younger”. I have no fucking idea why the hell she is obsessed with age. She is 11 months younger than me and says she is old. WTF. I don’t get it. I do not like the fact they have my mother’s bedroom at the far end of the house while every one else is not near her. Something happens to her, we aren’t going to know till morning. How the fuck is that fair. Her sugar was low Saturday night and she came in my room. I was up because I had used the bathroom and couldn’t go back to sleep. She is supposed to navigate with a low sugar to get help or to the kitchen?? Obviously they didn’t plan this out or think this through.

Last night I was in a dark mood. I wrote a draft of what I wanted to say to my psych. Then sent off another email around midnight as I was in so much pain with my back and ankle I couldn’t sleep and was thinking of ending it. I have been slowly doing stuff in my room and it is costing me big time. I bought 6 bins to put my stuff in. I wanted to do stuff yesterday but all I got done was making space for one bin when I wanted to clear my bed so I could change the sheets. I had spilled Gatorade on the bedding so they need to be changed. I wanted to get it done today but I needed a shower, something to eat, and to pick up my meds. I actually had to go to the pharmacy twice because I forgot my ID at home. By the time I came back the second trip, I could barely make it home. I was sweating profusely, back and ankle kicked up two houses from mine, and I was kind of wishing I was fucking dead at that point. I had to change my shirt again. I wanted to jump into a cool shower but I don’t have the energy. Changing my sheets might have to happen Friday, if I don’t have to go to another pharmacy for my pain meds. Maybe I will go to a different chain this time. This new pharmacy always has problems with my meds every month since the other one closed. I am sick of it.

Back is so flared up my scar is hurting. I had to email my pcp to see if he knew of anything to help. He said maybe lidocaine. I have some lido patches so have been using that at night. It has been helping the pain but not the inflammation. I can’t use ibuprofen anymore because I have been getting flares of gastritis. I am on a PPI so I shouldn’t be getting the gastritis and having to use an antacid to settle my stomach. I switched from morning to evening and that has helped. I still don’t want to risk rocking the boat so am avoiding the ibuprofen. I just been taking Tylenol. Some times the pain med helps if the pain is severe enough but it is mostly muscle pain. I know I need to rest it but I got so much shit to do in my room. I thought every other day would be okay but nope. Just makes the pain worse and then I am out of commission for a week. I am just resting the rest of today. I had made a breakfast burrito so that should last me all day. I stayed in my room all day yesterday to avoid family. I didn’t go down to eat at all. I was going to when they had the meeting with my mother. I feel like my sisters are ganging up on my mother and I. All I had to eat yesterday was a protein bar and half cup of coffee. Think I might have had another protein bar before bed but my stomach was killing me so I don’t remember. I lost eight pounds in a week because of the stress. I either had no appetite or just didn’t feel like eating. I think last night’s stomach pains was hunger pains.

I am holding off on sending the draft to my psych. I have a tentative date I want to end things. I really don’t see the point of going on with the ongoing stress at home. I am trying to hold on to what she said of what I have to give to the world. A person on Twitter that I do not know had said the same thing. She had followed me for a while and said somethings that really made me think I mattered in what I say in my tweets, even if I don’t get likes or comments on them. A follower I know through the red sox said she found the courage to share her pain issues on Twitter because of what I write. It is so damn hard to continue living when you want to die yet know people out there, many you don’t know but know of you ether online or through social media, want you to go on despite you having no desire to.