Tag: Post Traumatic Stress Disorder (PTSD)

troubles

by Midnight Demon, posted in cauda equina syndrome, chronic physical pain, depression

I am having a hard time tonight. It started with some panic attacks about my nerve condition. I had to talk to someone about it as I was getting really nervous but didn’t want to go to the ER. One of my friends from the support group gave me her number and we talk for a few hours. We exchanged stories and the like. It was good talking to her because she knew what I was talking about and that made me feel better.

I still haven’t had a chance to fall asleep. I am still in a lot of pain and it is keeping me up. I have my little sound machine on so that it calms my thoughts. I took two ativan and it still hasn’t knocked me out yet. I feel calmer, just not sleepy.

What set me off tonight was my bladder not functioning the way that it should. All day, I have had some hesitancy that has me worried. It could be because of my pain medication or my bladder getting worse, but as I have had back pain over the last few days, I am hoping it is not disc related. I see my PCP next Tuesday and that is a long time to wait to see him when you are anxious. I hope the symptoms resolve by the time I see him. I know what to do if things get worse but I rather not think about it. I hate having MRI’s done. I will need an IV for contrast so I will need to be hydrated so the nurse/technician can find a good vein. I just am really scared and my friend calm me down some. I know I will be better by morning, if i ever get to sleep. I am very tired but just not sleepy. I hate that.

I thought I would write because sometimes writing helps to put me at ease and help me to fall asleep. I just hope that I am not getting CES x 3. I will be very devastated if this happens, especially when I know I didn’t do anything. I have not lifted anything heavy. I have not picked up anything that might twerk my back or slipped or fallen. The only reason my back could be hurting is the change in temperature. And the pain has gone away. I am just left with my regular stupid ass leg/ankle/foot pain. And tonight it does not want to calm down. Course I took my meds a little later than usual. I was watching the Sox game so time escaped from me. I should have taken them when I came home from my cousin’s house. That would have helped some because I know it was going to flare up tonight.

I feel like I am going crazy. I emailed my psychiatrist to let her know what was going on. I usually don’t get panic attacks like I did tonight. I am usually able to handle them better but tonight I just couldn’t deal. My defenses were down for some reason and I just couldn’t cope. It was really difficult asking for help but I am glad I did reach out and someone answered after midnight. It is now 0400. I am going to try and sleep now. Just hope I don’t dream of being back in the psych ward again. That dream totally freaked me out. I was dreaming of ending my life and got very upset that I couldn’t have the pills to end my life. I woke up wrecked. It has been a bad day for me emotionally and physically. No wonder I needed to talk to someone. I am so glad I have therapy tomorrow. I am also going to see if the Bozo has time Thursday. I am supposed to go to the Sox game but maybe she has an afternoon time before the game. I don’t know. I hate feeling vulnerable. PTSD makes you feel that way.

flashbacks and memory lane

by Midnight Demon, posted in cauda equina syndrome, CES, depression, medical, psychosis

Yesterday’s blog still has me reeling. For some reason I still feel like the world’s biggest jerk and I don’t know why. I think it just could be the depression coupled in with the voices. I keep on getting psychotic breaks despite being on medication but this week is my anniversary of my first CES diagnosis. Last night I was having flashbacks. Every time I closed my eyes, I was in a hospital bed. Being in pain last night didn’t help. I am trying to cope with this but it is just so hard to deal with all the time because CES affects everything I do. It’s like no matter what, there is a reminder. Like yesterday I was drinking fluids because my urine has been dark the last couple of days, indicating I was dehydrated. Well, I drank and drank only to leak and leak. Then I had to have a number two and almost didn’t make it to the bathroom in time. People think that I am doing fine because I am not walking around with my walker anymore but I am not. I still have nerve damage to sensitive areas, areas that are not part of the normal conversation. Sure we can talk about walking and standing and shit like that, but we hardly ever talk about bathroom stuff. Only a few friends and family members know that I have this problem. Granted it is not as severe as some one else with CES but that doesn’t mean I have CES any less.

The depression I know will fade one of these days, maybe when baseball returns next month. I just know I am stressed out over this book. I am reading it and wondering if I can truly put out the dirty laundry more so than my blog, because once it is out there, I can’t take it back. Having the flashbacks last night made me realize that I still am never going to get over this. Every year there is some reminder and today my scar is itching. I remember after surgery how nasty it felt to move the muscles around because they weren’t together anymore. I remember not feeling “whole” anymore because I had stitches in my back and pieces of disc taken out of me. You never know what that is like until you go through it. Sure people have surgery all the time to take the bad stuff out of them that is causing them disease but they hardly have to face it again and again. And I got CES twice. Lucky me. I have had four back surgeries. The first two was done thirteen years ago. The first was to remove the disc that was causing my legs not to move properly. The second was to remove the infection that happened two weeks later. I had a nice staph infection and had to be on strong antibiotics. These antibiotics almost killed my kidneys and liver. I went into kidney failure and they weren’t sure if I needed dialysis or not. It was a wait and see game. Luckily, after they stopped one of the antibiotics, my kidney function tests came down, albeit slowly. It took almost two months for me to have normal kidney function tests after I stopped the antibiotics. I also was very weak as my blood count got really low. To say that I was anemic would be an understatement. I was told I might need a transfusion if my count got any lower. I didn’t want a transfusion as I always heard stories about things that happen, like a transfusion reaction where you reject the blood you are given. I was scared. And I was alone. It took a few nurses and several family members just to get me to consent to the second surgery. I wanted the infection to kill me. But I am glad I got it because the pus pocket was close to bursting and if the stuff got on my nerves, I would really be in bad shape.

Memories such as these keep popping into my mind. I can remember stuff like this but yet I can’t remember if I had breakfast or not. The brain is a funny thing. I guess it just remembers what it wants to. I just wish it would happen during the day and not at night when I want to sleep! But the depression remembers these things. I know that if I was in a better mind set back then, I probably would have been over this a long time ago. But it’s important to tell people that those with back pain can get CES if they are not careful. All it takes is a herniated disc to rupture and boom, you will have this dreaded condition. I just hope that if this happens to you, you get the care you need within 24-48 hours after onset. Or things might be permanent. I was lucky that my CES diagnosis was caught early to reverse the nerve damage that was preventing me from walking. I can walk without a limp but I still need an AFO (ankle foot orthotic) because my foot is still weak, even after all this time. And no matter how many times I have been to physical therapy and there have been quite a lot, I still can’t regain the strength I lost. I am at 90% recovery. The bladder and bowels were after effects. And most likely caused by the second surgery/diagnosis that was at a different level. That happened five years after my first. I was a lot calmer about the second go round than I was the first. What truly helped me was finding a support group (www.caudaequina.org). Knowing that I wasn’t alone and knowing what to expect truly helped me recover and keep my spirits up.

PTSD and of course CES

by Midnight Demon, posted in blogging, chronic physical pain

I took a break from writing today. I got overwhelmed with my book and decided today I was just going to do nothing about it. Actually, other than eating, I haven’t done anything today. It was icy today so I didn’t want to venture out. I texted my therapist last night and just about a half hour ago to try and get her to call me. I am feeling stressed out about the flashbacks I have been feeling since my writing yesterday. The pain in my ankle and it going to sleep on me hasn’t helped. When I first was diagnosed with Cauda Equina, that was the first symptoms. I had numbness in my leg from midshin down to my toes. And OH MY GOD the pain I felt if I put any pressure or weight on my leg if I tried to walk on it. I had forgotten these details until I wrote that stupid introductory paragraph.

I am kind of pissed off that my therapist hasn’t responded to my text. Usually she writes back if something will open up. I hope that she will call me. I just need her reassurance that I am not losing it. This book is taking a lot out of me than I ever dreamed about because it is so personal. I know I have posted a few blogs that dealt with the details of my injury, the bowel and bladder problems, etc. I am in chronic PTSD model anyways and throw in a lousy couple of memories and BOOM, Flashback City! I know I am seeing her tomorrow. But it would be nice to talk to her after the long weekend away from her I had. And we didn’t have a chance to talk on Thursday.

I have been sleeping on and off most of the day. It’s been too cold to leave the comfort of my bed, except for eating. I didn’t even make myself a cup of tea. I might make a cup later. I just feel so cold and my ankle isn’t helping because it is cold all the time. Like now. I swear I just want to amputate the thing so I can go on living a somewhat better life. Granted I would need a prosthetic but at least I won’t have pain. Or if I do, I will know the reason for it. My ankle hurts for no reason and it is all because of nerve damage. I don’t know if it is new or old. My neurologist doesn’t think getting an EMG will be useful at this point. I have to agree. There is no way to tease out the old from the new.

memories of the past

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, depression, mood disorders, physical pain, writing

It’s the beginning of February. January is now a thing of the past. It was a tough month to get through. I still am hormonal and don’t like it one bit. I never cry unless there is a good reason but lately everything makes me weepy.

February is not a month I enjoy either. It is an anniversary month of my CES, Cauda Equina Syndrome. I got it 12 years ago when I was twenty-five and it has messed up my life since then. (for story see https://midnightdemon.com/2012/12/21/my-ces-story/) I have made progress with it. I can walk without assistance but I need an AFO (ankle foot orthotic) to do so or I pull my muscle in my leg, causing me pain. I can’t stand too long or walk long distances like I used to before CES. And it sucks because I love to walk. Now I’m lucky if I can walk around the corner to Walgreens without feeling fatigued and in pain. I wish I could say that the bowel and bladder aspect is great but they have gotten worse over the years instead of better. I no longer trust farts. I have had too many accidents thinking it was air when in reality it was shit. To many CESers, it’s called Sharts. My bladder leaks when full until it registers that I have to go. I guess me wearing feminine product at this time is a good thing. I don’t have to worry about leaking into my underwear as there is a pad there. I mostly have to worry more when I go out.
The pain of living with CES is horrendous. But since I have been back on my mood stabilizer, the zings, burning, and zaps have been to a minimum. Except my leg pain has been there with it’s own twinges and pain. This is the type of pain that drives me nuts and when it continues longer than twenty-four hours, makes me suicidal. I have a high pain tolerance but after dealing with something painful for more than twenty-four hours it wears you out like the flu. I am on a ton of pain medication from anti-convulsants to gels to narcotics to deal with the pain. This combination seems to be working.
The New England weather also plays its part in driving pain levels through the roof. If the temperature drops or has a high between 20-30 degrees my spine will ache something awful. Yesterday was 50 degrees and today it is supposed to drop to 10 so I know I am going to be feeling it. Right now it’s 30 degrees out but feels like 13. That’s my hometown for you.

I hope this month doesn’t bring the flashbacks of 2001 with it. I really don’t want to go through that again. It was tough the first time around. But you never know with PTSD (post traumatic stress disorder) how you are going to react. You might be fine or you might be a basket case. Your nerves might be on edge all day. Luckily I don’t work where this all happened so it might be easier this year. But you would think that after ten years it wouldn’t affect you but it does. Just like in March I always remember the night I fell apart. Sometimes you are just stuck with the images in your head that you just can’t get out. You get sucked back into the past. And it’s an anxiety provoking experience. But I have learned a thing or two about grounding and staying in the present.

I have a week to try and not think about it. A week of not remember what it was like waiting in the ER, talking with the neurosurgeon resident, neurology resident, and neurology fellow about the seriousness of my condition and need for surgery all on being awake for 36 hours of being in pain and agony and no sleep. But when things were at the worst and it was 4 in the morning, I had enough of being nice guy and wanted to speak to my psychiatrist about being “competent” to sign a consent form for surgery. She explained the story that I had CES and needed surgery and not the three idiots that were standing in front of me. I quickly asked if the surgeon was board certified and found out he/she wasn’t so I said find me someone who is or I am not having the surgery. That’s when they called in a pituitary specialist to do my operation. Luckily I was ok but I developed a staph infection two weeks later and needed another surgery to clean it out. Which meant another week in the hospital. I’m getting anxious writing this so I am going to stop here for now. You have the CES story if you want more on what happened after this.