sick and in a flare

Sick and in a flare

I woke up around 5 am because my bladder said to. I then decided to stay up as my grocery delivery was scheduled between 830 and 9. I had two cups of coffee and a breakfast sandwich. After the delivery I put the stuff away and then got my haircut. I went without checking the bus schedule and was too early. I had sent a message to my doc asking if I had to see him because of the mucus being green from my nose. I didn’t get notification until after I got home so I had to go back out again. I just wanted to go to bed and sleep. I was so tired and I had a mocha after my cut. No amount of caffeine was going to keep me awake. I got to the doctors and had to wait. Office was busy. I got sent home with a “ I will live” and I cursed myself for going in. I was really exhausted and tired by the time I got home.

I was playing with my phone and had to use the bathroom. Coming back to my room my ankle flared up. I had to have my niece get my cane in my room. Now I am stuck here. I went to bed before grabbing some catheters so the next time I go may not be the bathroom. I have not been successful cathing in bed. I guess I will have to figure it out now.

I used to love Twitter. I used to get my news from there. Now, I rather be in the dark about the fucking news because every day my govt does something stupid or unconstitutional. Let this year be over so I don’t have to deal with the election bullshit (I will vote!!) and let Jan 31st happen with NEW admin that is Democratic or Pigskins anything but R. All I will say on the matter. If this offends you, I am not sorry.

Hope this weekend’s storm doesn’t kill me. My little suicidal brain has been calculating shit. I won’t get far if and only if my psych do what I told them to do. Other day when I was in painsomnia mode, the voices got out of control. I was thinking of going in the hosp but now with this cold, it isn’t going to happen. They don’t allow fricken cough drops on the unit and the ones that they do allow are the kind that a doctor has to write an order for and numbs you. I hate those kind. I also don’t think going in will be good for my bladder condition. I am too fearful of an infection happening, either because of my having to cath (if the unit allows ME to do it) or if I have to have a Foley and a leg bag. Psych unit bathrooms can be gross even if cleaned once a day. The voices are responding to the higher dose of Invega. I guess I will have to keep taking this dose despite side effects. Benadryl and Ativan will have to be my counter agents for the side effects. I switched taking it to the morning and haven’t had any sign of effects yet.

I’ve already decided that if I am still sick next week, I am going to cancel my appointments with my psychopharm and therapist. I didn’t have therapy this week because of being sick. I supposed I could have been seen today but I really didn’t want to so opted for next week. I am having the fuck its come into play where I don’t want to see either of them because I just feel so damn hopeless. I might cancel anyways or just one as I am supposed to meet both the same day but at different times. I don’t know why I do that because it kills me but it gets it out of the way I suppose. Guess it will depend on how much this virus and this flare will conspire against me and what my recovery will look like. Stay tuned…

dumbass 674 word blog at 1 am

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??

painsomnia hits again and about therapy

Painsomnia hits again

I’ve been up all night in pain. I took a shower about a half hour ago to see if that would relax me enough to sleep but it hasn’t yet. I feel a crash coming on but felt the need to write. I need to “listen” when the writing comes on.

I’ve been thinking about therapy a lot. If you’ve been following my blog, you know that I contemplating discontinuing it for now. I don’t want to sway people away from therapy. Therapy can and is useful to people, whether you have a mental disorder or not. Sometimes just talking to a nonjudgmental ear is what people need to help them through a difficult spot. I have been going to therapy since I was 15 because there was something “wrong” with me. I didn’t know any different and now I am questioning whether I really need to see someone for something I don’t see as “wrong”. The therapist I am seeing doesn’t recommend that I stop going. Quite the opposite as I am suicidal. But it is my decision to make whether or not I go and if I continue, what do I want from it. I have been thinking about dealing with the trauma of my past, to move past it because I haven’t talked about it other than in a mentioning tone. I never explored how it makes me feel. I mostly have been invalidating myself for things and then this fucking neuro condition entered my life and all fucking hell broke loose. Things don’t matter to me much anymore. I am not going to get better medically. I could get worse. I could lose feeling in my legs and the ability to walk, again. Having surgery for the cord won’t stop the progression of the discs but at least we know the nerves are free and won’t be damaged as much should another massive herniation happen.

My gut says that I should be in therapy because I am depressed and suicidal. Maybe dealing with the trauma issues like I talked about will help me be less suicidal. I also think that continuing to go might help me better control my suicidality in a way that doesn’t always mean acting on it when I feel it or plan to act on it. That is a slippery slope because that would mean I would want to live and I don’t. Right now I feel like I am being forced to live. I feel like I should die because I need to. I am in too much pain to bear and no one really understands it except another person with chronic pain, specifically, CRPS. There are different kinds of chronic pain but most of it can be dealt with (except arachnoiditis and other nerve pain like Trigeminal neuralgia). If you are reading this and suffer from chronic pain, I do not mean to minimize your pain. It could be worse than mine or someone else’s. But I know the drain it takes on you. The exhaustion, the sleepless nights. The wanting it to stop so you can just brush your teeth or even make something to eat. That is the problem I have. I have to make myself something to eat when I don’t want to or am in too much pain just to stand for a minute and thirty seconds for a chicken patty sandwich. I bought loads of them with hamburger rolls so I will have them when I can make them. Thing also is, there is no one to make me food. Sure I could ask my mother but half the time, I don’t know what I want or I just don’t have the energy to go downstairs to eat because I am not hungry. Food doesn’t appeal to me sometimes.

I am not sure going to therapy is going to give me my life back. I am never going to be able to work again. I was deemed permanently disabled at the age of 36. I still have not dealt with that and I am not sure this therapist I see can help me with it. She doesn’t understand chronic pain or disability. I got to find her age though. It is killing me because she said she was around my age but she didn’t say what it was so now it is bugging me. I don’t know if she will tell me but I can try. But knowing this comes with the cost that I don’t have my degree because of my mental illness and that hurts more than CRPS ever could. I never became the doctor my family wanted, that I wanted to be. Sure it has changed since 8th grade but I still held out hope that I would earn my medical and philosophical degrees. I wanted to me an MD just for the sake of it and practice being a psychologist. I didn’t want to be a licensed doctor because of my suicidality but I did want to have my MD because that was my dream, even if I never practiced medicine. I still hope one day I can get my medical degree. That is if I don’t kill myself by year end or some other year.

Pain is getting worse and I am losing my patience with it. I am also hungry. I wish I had an egg burrito. I need to make some and store them so when I am hungry all it takes is two minutes to have something to eat. But I really don’t want to go downstairs because I am hurting too much right now. Maybe if the pain meds knock it down a bit, I will. I put on a compression sock as sometimes that helps with the pain. I just can’t get ahead of the pain no matter what I try and it is making me feel hopeless and angry. Paingry.

Therapy could still be useful. I’ve been with the same therapist for the past five months. Hard to believe it has been that long. There are some stuff I want to work on in therapy and I think I have the right therapist to do this work. I just don’t think that me being forced to still be here is helping a lot. I think with my suicidality being so high the past few months I’ve really just seen suicide as my way out and no one has really asked me why. Instead I feel I am being forced to live. I have the right to die. If I was an animal, I would have been euthanized already. I am tired of being tired, being in pain, struggling with depression and insomnia that goes with it. Now my bladder function is no longer working right and this is my new life. Having to cath to urinate. All because I can’t do it on my own as much anymore.

I have a date in mind but I don’t think the weather is going to be favorable for me. I need to try and end my life. That is all I want to do but I know that if I am in therapy, I can’t talk about it without problems. I need suicide to be an option. I am not ready to give it up, now or ever.

neurosurg appt and other things

Neurosurg appointment and other things

I didn’t want to get out of bed today. I didn’t sleep well. I was up most of the night in pain then in the morning I kept on having to run to the bathroom because of bladder and bowels ready to unleash themselves. I didn’t know if I would be able to go to my appointment because my bowels were acting up. They settled down but I was so fricken tired. I never showered like I wanted to. I stunk. I honestly don’t remember the last time I showered. Probably last week. It was snowing all day so walking was not the best.

The neurosurgeon had no idea why my bladder is not functioning the way it should. There is nothing he can see but thinks it could be a tethered cord and I have to get a special MRI so they can see it. He also wants to get images of my thoracic spine so it is going to be a long time on the machine. My back isn’t going to like it. Once I get the images done, I come back and we will discuss what to do. It doesn’t sound like the injury to my bladder is going to be helped either way. All we can do is prevent more damage from happening. I talked with the NP psychopharm before the appointment. I apparently sent her what was going on and like what usually happens, I forgot I sent her what I wrote. I am kind of feeling suicidal as this is pretty hopeless things for my back aren’t going to get better. Even if I were to have surgery, it would just be as a preventative thing, not to fix what the damage done. I can’t go to my happy place now even if I wanted to end things there. Too much fucking snow. I might have to get a hotel.

I’ve had no appetite today at all. I didn’t even have coffee. I had 3 OREO cookies and that was it. I came home from my appointment and went into a flare. Actually, I think this is the flare from Thanksgiving as I don’t think it ever went away. Nothing is touching this pain. I canceled the appointment for tomorrow with that psychologist I was supposed to see. I just can’t go out for the third day in a row. I am exhausted. All these fricken appointments that are back to back are doing a number on me. I am surprised I haven’t had more flares.

I’ve thought about my therapist all day today. She is on vacation but I wish I could have had a chance to talk to her. I see her next week but it doesn’t sound like there will be too many appointments this month because of her needing to take time off. I still haven’t written about why I should discontinue therapy. I might work on it tomorrow. I really need to think about it. Therapy for the most part has helped keep me here because the therapist wanted me to live. I just never shared in that aspect that I need to live. I feel like I should die. I always feel like I should die, that things will be better off if I were dead. Now that I know neurologically I am fucked, it doesn’t help keeping me here. And even though I never thought about having a relationship with someone, now that will never happen because I’ve lost feeling in my sexual stuff. I am okay with it but for some reason it is just another thing my fucking illness takes away from me.