Category: CES

had enough

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, chronic physical pain, physical pain, suicide

Today was interesting and bad. It was interesting because for the first time, I was at Starbucks and there was a mentally ill guy there just ranting on all the customers, mumbling something and he was asked to leave but didn’t. he just took his jacket off and told the guy next to him this is going to get interesting for the next 30 mins. The manager of the store decided to call the cops. I was in the middle of an email and said god only knows what as all this was going on and left the store. I wasn’t hanging around to find out what this guy had up his sleeve.

I had ordered a plain latte to try it out. Never again. It was so plain, LOL. I went across the street and had lunch at McD’s. I really wanted a big Mac. Then decided to go home so hell can start. I had to go to the bathroom by the time I got home. Because my nerve condition affects my bowels, it’s hard to go sometimes and today was the mother load. I felt like I was trying to push out a tuba but only rabbit turds came out. The hardness caused some bleeding and I thought great, I’m bleeding from the front and back now as I still have my fucking menses till god knows when! My mother decides she has to go so I had to hurry up. I ended up getting stuff everywhere, rushing so my mother doesn’t end up peeing herself. I never had a day like today. And it still is wicked humiliating to me. The psychache just too much. I just am so numb, well emotionally. Right now my feet are doing a cramping dance because they are cold despite warm socks. I just hate that I can’t go to the bathroom like I did before all this CES (Cauda Equina Syndrome) entered my life. I feel really bad because I NEVER had shit on the bathroom floor before but there must have been some stuff there after I wiped and I didn’t know so when I got up it fell on the floor. Luckily my mother didn’t notice it or I would have said I stepped in dog shit (even though clearly there was no shit on my shoes). I just want to die from embarrassment.

To say that today has been a shitty day is an understatement. But this is the life I live now. My nerves no longer tell me where my stool is. Half the time I go pee and hear plunk. My biggest fear is when I have loose stool. That is when I really have no control. The hardest part is that I wanted to tell someone but I had no one to really tell. I belong to a support group and could have gone there but lately all my post there have been negative and I know they would have understood but I just feel like a burden to them because I need their support sometimes too much lately. And it’s not like I can explain it to my family. They would freak out and I know there would be that awkward day where my mother would ask if I shit myself today because she thinks it’s being supportive. But it’s not. I hate telling her anything about my condition. She blames me for having my surgery, even though it was an emergency. I had no choice. It was either surgery or never walk again. The second time I didn’t tell them why. It was because I was losing control of my bladder. I also had wicked bad leg pain. My surgeon was surprised I was still able to walk with the disc material in my spine where it shouldn’t be. I still have the pics on my private Facebook page to show my fellow CESers the material. Normally you can’t get that stuff but because I worked in the path dept at the time, I knew who to talk to about getting it. I wanted to see for myself what it looked like. This was only for my second diagnosis. My first one I missed the disc by a few days. It’s like having a trophy but also a reminder of what these buggers can do when they get wrapped up in your nerves when they shouldn’t. I had one disc fragment embedded in my L3 nerve for a few days. I lost use of my left leg and it took months of rehab to get it back. Too bad it didn’t help my foot drop on the same side. I never learned to walk correctly or if I did, it was only when I was a fatigued that I would not. It’s so hard knowing now that I am not working whether being stationary is helping or not. I know I did a lot of walking today and it felt good but now I am paying the price with cramps in my feet.

ramblings 28

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, chronic physical pain, physical pain, psychache, writing

I’m hurting tonight. Left leg is swollen and hurts like a SOB. I hope I get some sleep tonight as I got to get up early tomorrow. I have an appointment with a group leader I hope to get into a group with. I don’t know if it will work out as the walk is a hike from the T station. I’m worried I might not make it. I’ll bring my cane tomorrow just in case my leg is in support. I know it is because it is snowing out.

Today was my niece’s birthday party. I made chicken wings for the party. They were gone by the end of it. Everyone loves my chicken wings.

I got a paper I need to revise for an upcoming blog post. I have had a chance to do it today and doesn’t look like I am going to do it tonight as I am pretty medicated, or will be. The pain started when I woke up this afternoon. My sister kept calling me like every friggen hour on making the wings so I didn’t get much sleep. I hope it doesn’t last long because it will drive me crazy and it doesn’t help me walking.

I hate waking up early for any reason but tomorrow I will make an exception and go to this appointment. I hope it is for the good because I really want something that gets me out of the house and maybe help my mood somewhat.

The Price of Walking

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

Twelve years ago I lost motor function in my feet and legs. It was caused by a disc fragment that was pressing on my nerves. I had to have surgery to remove it. It was the size of an almond. The road to recovery was not an easy one. I had to relearn to walk again with a walker. It took a few months before I felt confident enough to walk with a cane. Took me several more months of walking with the cane before I grew dependent on it and decided to walk without it. My balance was still somewhat off but I was walking.

Today I am walking with a price. I never learned to walk properly and my left foot never regained full strength like my right. So instead of walking heel to toe, my left foot decides to do a swerve maneuver and cheat to get to where it needs to be going. I can’t watch my feet where they land but this is what my physical therapist sees when I get evaluated. Most of it has to do with fatigue. Once I get fatigued, the swerving starts and pulls at muscles and tendons that should not be involved in walking. That is where I am at today. I have pain in my leg and foot and ankle all because of this disc. But it’s a small price to pay. Least I was able to regain something of what I lost. But it cost me my job. I am unable to work because I cannot walk long distances without fatigue and pain. Even though I have done my job for years the wear was just too much. Even today if I walk too long or stand too long I pay the price of pain. I wear an AFO, least I am supposed to. I haven’t worn it in a few weeks because I don’t go out much anymore. I might go out 3 days a week if that. I go out to get my coffee and maybe write a little outside of the house, to break up the routine of nothingness. I was once an active guy. Now I have nothing to do for hours on end. I was once working two jobs. Now I have no job. My income consists of my SSD and long term disability I get from work. I don’t think I can go back to work at the job I was doing. It was too stressful and chaotic at times. Long hours on your feet walking around a huge lab. Just getting there I was hurting.
Now my doc wants me to go back to physical therapy. I have thought about it but I keep wondering if it will really help. I do the exercises, I stretch, but I see no benefit. All it does is cause more pain than what I was in. My neurologist wants me to start this new pain physical therapy program that is supposed to help those with injuries like mine. But I am too scared that I am not going to be able to afford it with the copays every other day or every week. I can barely keep up with my own psychotherapy copays. That what truly is stopping me. Just knowing I have to pay $15 per visit for something that might or might now work for me. I wish I could just join a gym and walk on a treadmill but those days are over. I can barely walk down a block or a few blocks without pain. I rather just take my pain meds and do as little as possible. Hence why I don’t leave the house as much anymore, even if it is for a cup of Starbucks coffee. It used to be the one joy in my life, now it’s nothing but a hassle. Another price I have to pay for learning to walk again.

Thing is even if I go to this special program, they aren’t going to see the pain that I am in right now. It’s almost one o’clock in the morning. That is when the pain really gets going. So how am I going to portray myself as having pain when before 9 pm I am not in pain and feeling ok? It sucks because I would love for them to see how swollen my foot gets at this time. How much my foot throbs in pain, how much the zaps make my foot jerk, or the vise like pain that has me crying out in agony every night. The pain gets so bad that all I can think about is death and suicide. That is the price I pay for learning to walk again. And the price is too high.

Because no matter how much I pay my copays, no matter how many visits I make to the physical therapists, they are not going to be with me as I am crying in agony wondering why I am living this life. So Monday I will call and make an appointment with this special physical therapy group and see what things they will show me that I already know in the twelve years of living with this bullshit. Because in all these years, I have yet to regain strength in my foot, despite all the exercises they have given me. I truly have lost the motors of my foot because I got hit with this a second time at another level that left me with foot drop again. I think that if I didn’t get this a second time I probably would have been ok and not be in the predicament I am in now.

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.