Tag: chronic illness

baking and the tireds

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

Baking and the tireds

I woke up around 9. I had energy but I didn’t feel like getting up. I had to bake the zucchini bread, which I did do eventually. My mother made my custard pie for my birthday tomorrow. She is having a party for me. Little does she know that it will be my coming out party. I am not hiding who I am anymore and if someone calls me my birthname or “she”, I am going to correct them. If I am meant to be here, I damn well am going to be who I am and not who I am not. I am a male and that is all. I try to be a good, kind man.

After I baked, I got really tired. I went up to my room to relax a bit. I had to be careful with the damn catheter. I had tied the bag to my leg so I wouldn’t be touching it while I baked. I seriously am just so depressed that this is my life now. I will always have to either have a cath placed or do the cathing to excrete urine because I can no longer do it on my own. And there is no reason for it. There is some kind of nerve damage going on but nothing to indicate where it is coming from. I am so frustrated.

My pcp sent me a message this morning. I had replied to his from Friday, I think. I was upset that he didn’t want to treat my pain. He said that with all the medication changes the other docs and the psychopharm are doing, he doesn’t want to add to it. I understood where he was coming from after I had a good sleep and was clearheaded. The concussion is not helping me stay focused on things. I have been having memory problems and my rationale has not been in good judgment. I wrote back to him a few things to keep him up to speed. I don’t see him again till Feb. That is a long way from now. I also see the neurosurgeon a day before his appointment.

My therapist had wanted me to think about going to a DBT (dialectical behavior therapy) group. I thought about it but I also have a lot of questions about it. I wrote them down the other day. I hope that I remember the notebook I wrote it in because I also want her to write the stuff she was telling me to do to express my feelings in the moment when I didn’t have words for them. I talked to a friend about going to this group as physically it can be taxing. She said to give it a go and see how it fits. If it doesn’t then I can always leave it. I wonder if my therapist will think so. I have to be honest with her that this might not be for me as I haven’t had much success with outpatient group therapy.

I am absolutely dreading my birthday party tomorrow. I know there is going to be a lot of pronouns and it is just going to stress me the fuck out. I guess I can talk to my therapist about it. Might help me to unload the fears I have about stepping up this far with my family. I know they aren’t going to be accepting. Some will, some won’t. But if I have to be here, why not let me be the man I am?

random thoughts 19 Dec 19

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

I had therapy today. It was the first appointment since my attempt on Monday. We talked about it and she is temporarily taking away my texting her until I am more stable. If I need to talk to her, I need to use the patient web thing. I won’t use the web thing because whatever I write gets put into my medical record. I had to send her a message today when I got home though because the concussion doc that I saw yesterday gave me so much more medication than I thought he was going to give me, especially after I told him I attempted on Monday. Fucking idiot. But then, not surprised. Professionals stay away from suicide as much as they can.

I got a few decent hours sleep so when I woke up, I was rested and decided to get moving as I was antsy. I was so nervous about seeing my therapist as I wasn’t sure what was going to happen. She told me that she isn’t going anywhere and to my relief she isn’t transferring me to someone else. I get to see her Monday, which is my birthday. I will be making zucchini bread sort to “celebrate”. The one I made for Thanksgiving was gone so I really didn’t have much of it the last time I made it, much to my disappointment.

I was developing some problems cathing so I let my urologist know. She said to come to the office the next day and she would put in a catheter. I went yesterday, after I saw the concussion doctor. I have a leg bag again. I cracked myself up today when I was going to pick up the medication the concussion doc prescribed as it can cause urine retention. I laughed because I have a catheter in me so it doesn’t matter if it does or not. I am not sure when I am getting this sucker out. The nurse is supposed to call me tomorrow when my culture results come in. They already did and it was negative so I want this out of me but it might be a while. I am not sure. As much as it is a pain, I kind of like it as I don’t have to leave my room for anything. I am trying to rest my flared up ankle as much as possible because I can’t stand being in pain anymore. If I can avoid the stairs, I will. I need to change the bag into a bigger one because fucking hell, I do not want to wake up at 3 fucking AM to empty the sucker. I just hope I put the damn thing in right because I really don’t want urine on my bed!

I have a concussion that the doc is worried about because it has been two weeks and I am still having symptoms. My memory was not perfect. When he gave me four things to remember, I remembered two. I know I totally fucked up counting down numbers from 100. And even something simple as remembering the date was out of touch. I couldn’t think what month this was. It was really difficult trying to have therapy as I kept losing my words for things. At one point my therapist told me to just take a breath and think then speak whatever the emotion was. I have trouble knowing what the fuck my emotions are anyway so today I just didn’t know my ass from my elbow. I got so frustrated because I couldn’t name how I felt. She wanted to know and I had no words. She jokingly said that we both will be without a jokester for a week and a half. We both are sarcastic as fuck. She will be away from Christmas until after the first week in January. She said we need to plan something while she is gone. I am kind of scared of what that will entail. I am not sure if she wants me to do shit while I am concussed still. I don’t see the concussion doctor again until the week she comes back. Both my therapist and psychopharm are out at the same time. I’ve been in this situation loads of times though not particularly after a suicide attempt. I know I will be alright. I just don’t think they will. The psychopharm wants me to call warm lines should I get suicidal again. She gave me a bunch of links in the Boston area which I didn’t even know existed. I probably won’t call them. I’ve never really found hotlines helpful when dealing with chronic suicidal thoughts.

dumbass 674 word blog at 1 am

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

Dumbass blog at 1 am

I cannot sleep even though I took some melatonin. Or I am fighting sleep because my ankle continues to be stabbed repeatedly in the same bloody spot that past 7 hours or so. I lost track. I am just disgruntled and want to fucking die but really am not sure what I plan to do is going to fucking work.

My bowels are backed up so I just took some Miralax. At 1 am. So I might have a bowel movement in maybe 12 hours from now, which will have me on the subway. I am brilliant, aren’t I???!!! I am so tired of keeping track of shit, literally and figuratively. I sent my therapist a text saying I won’t be seeing her tomorrow. But it’s still technically Sunday so that means today and the appointment is for Tuesday. My concussed brain fucked up. I am ready to give up on everything and just starve myself.

I posted some IG videos and pics today. I look like death hungover. Really, I look terrible and might take down the pics and video. I can’t believe I put them up to begin with. I am such an idiot sometimes. Ok, maybe all the fucking time.

I see the OT later today. I need to leave the house in about 9 hours. I am seeing her to talk about cathing. I am going to try and see if she can show me the best way to cath while lying down or sitting on the bed as that would be good on days I am in so much pain and don’t want to go downstairs because of causing more pain. I know eventually I will have to empty the container/urinal or whatever I use but the hope is not to be going to the bathroom when my pain is a 12+. She is very knowledgeable about spinal cord injuries and referred me to see someone that actually knows something about cauda equina syndrome AND CRPS! I am going to make an appointment with that doctor soon as I know what the hell is going on with my back and if I need surgery. Sucks I probably got to wait till next year to know as the holidays are up and I am sure the head honchos in radiology are on vacation. If I have to take the MRI again at the hospital where my surgeon is (MRI was taken at an affiliate hospital) then so be it. I don’t want to continue to lose function. I think my legs are starting to lose their stability as when I go downstairs, they shake. I have to go one step at a time or they just feel unstable but even then I have to hold on to the banister with two hands to make sure I am not going to fall. Hence another reason why I need to be taught to cath at the bedside. I will really be “set up” once I learn. I will have food (Ensure) and water so I really don’t need to leave my room except for appointments or something. HAHA OMG I have become an invalid or maybe I want that? I don’t know. I am just thinking of ways of staying off my damn fucking stupid ankle because standing hurts so damn much. Every time I stand up from bed, my ankle bones feel like they are being crushed.

I can’t stand this agony anymore. I really don’t know if I will go through with my idea tomorrow (today). I want to but I feel like a fucking chicken if I don’t try. I mean shit, I have been planning all fucking year and have not attempted. Came close a few times but did not attempt. I am starting to feel like such a loser for not trying. Just want to tempt fate a bit and see what happens. One day I will try it or maybe I will die in my sleep. What is wrong with that??

still in a flare

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

Still in a flare

I’ve been in a flare the past several days. Ankle is being stabbed repeatedly along with the 3-5 metatarsals being crushed. I took some hydroxyzine last night and omg I can’t take the shit anymore. I am so hung over. I might as well have taken tequila. My head is still hurting, right where I whacked it the past few hours. I took some Tylenol. I haven’t eaten so haven’t taken ibuprofen or naproxen. I decided to give naproxen a try as it last longer, well is supposed to anyway. I still need to take something for the headaches. I also feel like I am coming down with something. Not sure what. I think it is bronchitis as been wheezing at times. I am not an asthmatic so the wheezing is usually because of infection. It’s not all the time though. I don’t have an inhaler. I could use my mother’s, though I am not sure how old it is. I had one the last time I got this kind of sick but no idea where I put the inhaler. Probably in my jacket pocket or something. Throat is sore from all the clearing of the throat and cough. I have to call my pcp tomorrow.

Been feeling really shitty mood wise. I sent my therapist an article about suicide that my friend wrote. I am actually supposed to meet with him sometime this week. Not sure it is going to happen. I am feeling suicidal and apparently, one of my blogs I wrote last week which said how I was going to do it. Being in a concussion and not remembering what the fuck I write, I sent this blog to my therapist. Fuck. I took out the incriminating piece so that it cannot be used against me. But I know she knows.

Because of the medication, I have been going on my own today though I am not 100% sure I am emptying my bladder when I go. I was not sleeping through the night because of the of bladder. I know I woke up at midnight all fucking confused and staring at the time, wondering why it was midnight. I have no idea what time I went to sleep. I know tonight I am just taking my meds and nothing more. If I do, it will just be melatonin. I’m almost maxed out on my pain meds for the day. Fucking hate that I can only take two a day when I am in a lot of fucking pain. I have to space it out or I just don’t get to take anything. Sometimes I can take two if it is at night but most of the times, my flares are during waking hours so have to take something to get through. Then pain is unbearable at night, causing me to be up all night or afraid to go to sleep because of increase pain upon lying down. But this concussion is making everything so much worse. I emailed my neurologist the other night, I think when I was up all night because I just couldn’t sleep. I went to bed around 7 am yesterday morning. Things have been foggy. And my damn mother has been calling me like crazy. Thank god I blocked her because her ringtone annoys me (yes that is why I have it LOL).