Tag: hopelessness

random thoughts 05082020

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

Random thoughts 05082020

I went to buy some dark chocolate today and was rewarded with Godiva ganache hearts, which is the best of the best dark chocolate. It is so fricken good. I bought two packages. I could have bought all four that were there but I didn’t want to be greedy. I came home and I was exhausted. I made a bacon burger for lunch and then tried to nap but couldn’t sleep. I had coffee before I went to the store and it just made me tired. Tomorrow I might go to Starbucks before therapy and get a macchiato. I am in love with their Caramel Cloud Macchiato. It is so good. I think that will be good for me to go out. I am getting cabin fever staying inside all the time.

I wanted to shave and shower today but I am just too tired. Plus my ankle has been acting up so standing is an issue. I will try to do it tomorrow before therapy. I don’t know if my therapist has decided to meet twice a week because I am off my meds or what. But we have been the past week. If I end up seeing her Monday, I will know she really is concerned about me. I sent her a message that I thought made sense but when I read it, it didn’t make any sense whatsoever. Have no idea when I sent it. I think it was in the early morning hours when I couldn’t sleep the other night. I should have written what I wanted to and be done with it but my brain went a different direction.

Sox are playing now. I don’t care to listen to the game. They are playing at the Trop and I hate that ballpark. Sox are off tomorrow. Two of my favorite players are not playing tonight because they are in slumps. Both are left handed hitters and tonight’s pitcher was a lefty so I understand why they gave them the night off but it sucks because there are only so many games. The sox are not doing well anyways. I think their record is like 4-11. Least it was the last I checked. It has been good baseball has been back but it isn’t the same without fans at the game. The noise level isn’t the same and the energy the fans bring is obviously not there. Kind of sad.

I really like Taylor’s new album. My stupid phone only downloaded 14 of the 16 so I had to manipulate the settings to get the two songs I was missing. Of course one of them would be the number one song in the top 100 hits. I am so happy she made history by being the first artist to be number one on Top 100 Hits and Billboard’s 200. I have a feeling she will be there for a while. This is such a good album.

I hope I sleep tonight. Last night I woke up to pee at like 0330 and couldn’t go back to sleep till 5ish. It did me in as I was tired for most of the day. My level of depression has been high today. Gender dysphoria has been in high gear the past few days. I really hate my body right now and I don’t want to grow facial hair until I get my top surgery done, which is going to take some doing. I feel stuck and I guess I am as I can’t move forward with my transition until I lose weight. I don’t think it is fair that I have to lose weight to lose the things on my chest. It makes me so depressed. I hate being in this body and what is worse is that I have grown hair on my chest so I have hairy breasts. Totally fucks with me. Part of me wonders if I will be alive long enough to have this surgery. Right now I feel like I will be better off dead than continue to live the way that I am living right now.

a bad day of pain

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

A bad day of pain

I had a bad day of pain today. Ankle has been in a flare the past four days. Nothing was calming it down so I thought putting on a compression sock might help. It caused my high ankle to be bothered by the elastic at the top of the sock. I had to take it off. I could only take so much pain. My back was bothering me from sitting too long after my appointment with my psychopharm. It was good talking with her. I really missed her. She is back from having surgery two weeks ago. She faired better than me in that regard. I don’t think I would be back to work so quick.

We talked about my therapist and she asked if I wanted another therapist. I said I will discuss it with my therapist when I see her next. I don’t want to say yes and then we are able to work things out. I don’t have luck with therapists. They usually last a year with me if I am lucky, two years. More than that is a bonus but not expected. I really like this therapist but I am having trouble talking with her because of my fear of her laughing at me. I often feel intimidated by her and close up. I don’t even shoot the shit with her anymore because she becomes so rigid. It is hard to talk with someone when they have these expectations that you should talk about stuff. I get that is what therapy is about but I am literally not talking at all in sessions. I talk a little bit in the beginning but then I close down and it is so damn hard to open up. I also think because I have yet to attach a song to our work, it is hard for me to feel connected to what I am doing in therapy. Music lyrics always helps connecting me to therapy for some reason. I had quite a few songs with my therapist of 16 years. I would make her CDs to play. I was invested in the time with her. But my current therapist, I don’t feel like she gives a shit if I stay or go and that is hard for me to handle because if she isn’t in there with me, then I feel like I don’t have to say anything. She is noticing that I am not talking more. I can’t help but feel like this relationship is heading out the door. I will be sad to see her go because I know she is a good therapist, maybe she is just too good for me.

I just wrote her a letter. I told her my frustrations and more of what I just talked about. I think better when I am writing things out and I got a lot out in the message. I hate that I can’t talk to her in person. I think that is part of the problem but I don’t think it is going to change. I wish there was a room I could go to to have the conversation rather than for me to stay in my room. I think that is the other thing. I am trapped in my room with no way out so of course it is hard for me to talk. But the other problem is I feel she isn’t receptive to what I am going to say or is going to laugh at me for speaking about something. I am going through a lot medically and I haven’t been able to voice it to anyone but my friend in Canada. She is the only person in the world that gets what I am saying about my bladder and bowels and what have you. She also cares a lot about me and that is the thing with this therapist. I feel like she doesn’t care, like she can do without me and maybe she wants to get rid of me. I don’t know but I had to ask it. I know part of it is my whole nervous system being shocked with surgery on top of a CSF leak that is making me feel so drained that mentally I just am not there. I drift off and stay that way. I get like that while I am in session with my therapist and it is so frustrating because I just cannot think of anything to say. Nothing comes to mind. NOTHING!! It is like someone wiped my brain of all thoughts. My psych thinks it more neurologically than psychological. I am still recovering from surgery even though it has been 3 months but I haven’t really done anything in that time. I haven’t gone to Starbucks or any place else other than the pharmacy and maybe a grocery store. I haven’t gone for walks or even used the T to get around much because I have been feeling like such crap. But resting hasn’t been helpful for me. I do rest when I need it as when I went to the pharmacy to get the antibiotics I took a nap after. I had to I was so wiped out. I just conked right out.

I start PT tomorrow and I am kind of scared. I am scared it is going to hurt and cause me real exhaustion. In my current state, I don’t think a rigid regimen will work for me because I am just too weak. I am not strong enough for something rigorous. It is going to be a slow going and I have a good physical therapist that I like working with. She makes the difference in wanting me to get better. I haven’t seen her since last year when I was working on my right ankle to build it up. I am sure I am weak in my legs for lack of movement. I hope that I can build some strength up so that showering isn’t so damn tough. If I can shower without sitting down more than twice, I will consider that an improvement. I also want to be able to go upstairs without being so damn short of breath and my heart rate going bananas.

did too much and paying for it

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

Did too much and paying for it

Yesterday I did grocery shopping and showered. Today I went to the pharmacy because I forgot to go yesterday. It was hard. I walked half way there only to realize I left my mask at home so I had to walk back. I had to rest because I was short of breath. I got my meds and then collapsed when I came home. I have been sick since 11 am. I have tried to keep up with eating and hydrating but it has been difficult. My bladder is giving me signs it is not completely healed. I have been experiencing some hesitancy to go and then some starting and stopping when I do go. I am frustrated. I then had to go again an hour later and I had a full bladder when I cathed. So I can’t rely on voiding anymore. I usually cath at least three times a day but now it might have to be more. We’ll see. It is still early and I am still drinking to keep myself hydrated but it is hard when I am not thirsty.

I got headaches, palpitations, and high heart rate going on. I have been lying flat but I couldn’t stay down. I was too antsy. I should have taken an Ativan to calm down. I think I have to drug myself in order to get the much needed rest I need to get rid of the fluid. My friend said that it is like a bruise. Another person said that I need a drain. If I have to have surgery, I think that is what is going to happen. I am kind of scared of surgery because I already have arachnoiditis and I don’t want it to get worse or add to what I have. I am starting to have immune response to surgery and that isn’t good. Arachnoiditis is sort of like an immune response to surgery. My friend said that it will not go away. I am stuck with it but I need good pain control. Trouble is with Covid, I am not going to be able to see the new pain staff my pcp wants me to see and I know that I need an increase in pain medication. I don’t want to switch meds. I just want to increase what I have as the non-opioids are not doing much for me in terms of pain control. I have been on a stable dose of meds and just haven’t had too much relief except for the extra I take when pain is really bad. It really isn’t an “extra” as I don’t have much room to take more than I need on any given day. I hate that I sometimes have to ration my meds because otherwise I will run out before I can get a refill. It isn’t all the time that this happens. But with recovering from surgery, I have been in more pain than expected.

I want to write more but I need to lay down. Head is pounding and vision keeps getting blurred. I think if this keeps up I might have to go to the ER. I hope not but I don’t like these symptoms I am having and my gut is telling me something serious is wrong.

thoughts while reading

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

Thoughts while reading

I have been re-reading Unquiet Mind, Kay Redfield Jamison’s memoir of her bipolar illness. I read the part where she describes coming to terms with her need to take medication and how she lost a patient through suicide. I had highlighted the chapter, probably because I saw there was no point in keeping myself alive. I had always said I was to die by my own hand. I had come terribly close last December. I don’t know why I am still here.

Last night, after I ended my blog, I got the results of my MRI of the past week. It said that I had a large volume of fluid in my spinal canal. It also said that I had arachnoiditis, basically clumping of the cauda equina nerves. This occurred post operatively. I don’t know if this is going to go away. I know that it is a painful condition. I guess it is good that I already am on pain medication because without, I would probably be really hurting and be stuck without pain management. I am to see my primary next week. I want to ask him to increase my immediate release dose so that I am taking the same dose for extended release and for breakthrough. I don’t know if he is going to be open to it. I figure I don’t have much to lose by asking.

I had made some notes about the book on an index card I am using as a bookmark. There is a lot of stuff that is important to know if you read this book. One is that treatment of a mental illness is as good as the medication treating it. Lithium is very good for bipolar/manic depressive illness. I am finding that duloxetine finally is working for me for my depressive illness. I don’t have bipolar disorder. I have recurrent major depression and it has taken a lot of trial and error to find a medication that works for me. I currently take 50 mg and it seems to work. My symptoms are lower than they were though I am still in the severe range. It is just that I don’t always feel every symptom of depression every day. Some days I can feel it more than others so results will vary. But Jamison’s take on medication is something every patient goes through when they have to take medication for their illness. The struggle to stay on medication is real. You can’t change my mind on this. Everyone I have ever known struggles with being on medication, even more so with psych meds. The stigma that you should “fight” without it kills me. It is what keeps a lot of people in pain because they feel they shouldn’t be on medication for whatever reason, usually because they don’t want to feel “weak”. I call bullshit. You are far from weak if some pill will help you with your problem. Unless the medication you are using is the problem, that is a whole other can of beans.