Tag: nerve damage

horrible Monday

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

Horrible Monday

I woke up around 0300. My arms felt like spaghetti and were very spastic. I wasn’t fully awake but as I haven’t eaten in 24 hours, I thought it was due to low blood sugar. I had some M&Ms and Gatorade. By 5 I was no better and realized it was side effects from the Invega so I took an Ativan. That didn’t work so I took 25 mg of diphenhydramine. I was sleepy and my mother had a freezer delivery today so I had to be up but my body was like fuck you after I took sedating drugs. I just wanted to sleep. I also wanted to shower but that wasn’t happening with delivery men coming to the house. I just could not get going. I finally forced myself to wash up at least. The cool water on my face helped. I then got dressed to go to my appointment.

The appointment was for my neurosurgeon to discuss the MRIs I had Saturday. It was more of me sitting in the waiting room for a half hour for the surgeon to come and tell me the radiologist didn’t do what he wanted so now has to play politics with the two hospitals and figure out how to see my spinal cord the way he wants to. So I don’t need surgery, yet. But I don’t think he liked the lumbar spine. Something the way he said it made it seem it was bad. I had taken a fall Thurs so maybe something shifted. I don’t expect to get a report of the MRIs until next week in the patient web thing. So frustrating. Then I had therapy.

I swear time was dilated the whole time I was with my therapist! It just seemed to inch along. I felt like I was there for more than 45 minutes but I wasn’t. We talked about the blog I sent her. She didn’t feel comfortable reading it through as it felt like she was invading my private thoughts even though it is for the world to see. I respect that she was respecting me that way. She just skimmed the blogs that I have sent her. She said that my writing it is a tool to cope. We came up with a plan. I get to talk about my abusive relationship with my 2nd ex. I think if I air it out some, I might feel better because she is taking a lot of head space and I don’t like it. Doesn’t also help that every fucking time I touch myself I think of her touching me that way and being abusive toward me. The therapist wants me to write about the fear. I have decided to keep a notebook about this kind of work than make it online. She also thinks I have a concussion. I played along with her on this until I was on my way home and my head exploded. I was sensitive to light and sound as well as had ringing in my ears. I had the worst headache and I still have it. I think going out today was a trigger. I am not doing anything tomorrow so I am just going to rest.

I came home and I was freezing. I just wanted to nap. I tried and couldn’t. My mother called me asking if I called the delivery place because the freezer was too big to carry up the stairs. They couldn’t get it around the bend in the stairway. So now I got to order another freezer. I just laid down and tried to rest. I haven’t eaten anything since Saturday. Yesterday I slept all day so didn’t eat. I wasn’t hungry. Today I should be starving but I am not. My foot is flared up so cooking is out. I am so frustrated by this. I know I probably shouldn’t be but I am. I hate that any activity I do lately has been causing me pain. I am so on the edge with suicidality.

Therapist and I agreed to meet twice a week until she is on vacation again. We are going to try it to see if it helps and also keep me accountable to the writing she wants me to do. I don’t have the mental space to write what she wants today. I am so tapped out and lethargic from not sleeping and the headache is making my concentration terrible.

painsomnia hits again and about therapy

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

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

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

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.

The 3 AM Blog

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

The 3 AM blog

I just finished having pumpkin pie. It is one of my favorite pies at Thanksgiving. I had a good Thanksgiving, or what I like to call, Turkey Day. I spent it with friends who live south of Boston. It was a very good time, good food, and good laughs. My friend’s husband picked us up and drove us home so that was really nice of them. No public transportation. Around 1830 yesterday, my ankle started to act up and unfortunately, flared up by the time I got home. It is still hurting me as the pain is down to the bones and there is a storm coming this weekend. We are supposed to get wintery stuff. Last I checked, the weathermen didn’t know if it was going to be snow or rain. I haven’t looked to see what they decided. It is supposed to end sometime Monday morning. I need to know whether or not it is going to be icy as I have an appointment that morning with urology. I need to make the appointment because my bladder is still giving me problems. I keep having spasms while cathing. I sent my urologist a message last night and she said to stop one of the medications I am on as it causes spasms. So now I am down to two urinary meds. She wants me to switch to another medication but she wanted me to get the price for it first. She gave me a website to see how much it would cost but I told her, right now I don’t pay anything. In January, I will and generics will be $10-$20, $50-$70 for brand name. I haven’t heard back so maybe Monday she will decide what to do.

The pain levels have been unheard of. Pain kept on going from a 14 to a 16, down to a 12 then back up to a 14 after movement of some sort. At one point I was crying because I was just hurting so damn much. I really wanted to die. I ordered some stuff and it will arrive next week. Tuesday I have the neurosurg appointment and will decide whether or not to stay then depending on what the doctor has to say.

The therapist had said that she has a lot of time saved up that she has to use before it gets lost. So I might not be seeing her as much this month as she needs to take time off. I find this kind of weird as she has only been with the hospital for 3 years. You typically don’t get that much earned time during the first few years you start working. It gets more the longer you stay but not until after the 5 year vested pin has been issued. It just seems weird, unless she was working in another department in the hospital and just 3 years in the department she is now. That would make more sense. It kind of messes up my plans on whether or not to stay in therapy if I am not going to see her that much. Maybe seeing her less will be better for a while and then when she is back to working more regularly, we can then work on some things, like a specific trauma. I would like to talk more about the abuse that happened with my mother and the rape that I have never spoken about. She has pointed out to me several times that she doesn’t know my background on things so it is a fresh relationship. I told her about the second relationship I had and not the first. I will get around to it one day.