Tag: cauda equina syndrome

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.

International calls and PTSD

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

Had an interesting day today. I wanted to talk to my friend in England so I made the phone call, except I could only talk for 5 mins!! I was like WTF because I pay extra to be able to call internationally on my phone. SO I call sprint and everything seems to be in order on their end. The guy then transfers me to the international section of Sprint. Turns out that because my phone is a Google phone and Google voice is on, that was the problem, I think. I won’t be able to call my friend until tomorrow night to see if this works. This sucks but I have a therapy appt in a half hour so don’t want to be on the phone too long.

I rewarded myself with getting my Claddaugh ring fixed and sized the right size. I picked it up yesterday. Luckily it was just under $300 USD. The most I have ever spent on myself outside of electronics such as laptops. The reason it cost so much was because I had the shank fixed as well. I LOVE it! It fits so nice and I miss wearing a ring.

I have been stressed the past few days because of financial reasons. I have to call to work out a plan with my student loans before they garnish my SSD check. I am so worried they are going to leave me with nothing. I so wanted to save up for a car this year but doesn’t look like that is going to be likely. I need to be able to pay the cable bill, my mother for the mortgage, and my cell phone bill. I also NEED to have money for my “crack” Starbucks coffee but I can do without as I can go several days without needing it. But when I want it, I want it dammit. It is the only JOY I have in my life is that one cup of coffee a day.

I still have my fucking menses that are just driving me beserk. I was supposed to call the repro-endo doc today but never got the chance as I was lazy when I woke up this morning. It is still cold out, not as cold as it was yesterday but still cold and I wasn’t sure I wanted to go out. I had some mail to mail so I said the hell with it and went out. Sometime I just need to push myself. But while I was walking it felt like I was walking in mud. I hate that feeling more than anything. Some days I feel like I am light as air and other days I am walking with cement shoes on my feet. I don’t get it. I also had another damn problem with my fucking pain medication. Doc wrote for extra so in case I need them, I have them. Well the way he wrote it is only for a month supply only and the pharmacy won’t give me this extra! ARGH!!!! I am so fucking pissed off because last month he said he was going to change the prescription to 1-2 tabs a day and this month he didn’t. I am so pissed off right now. I just hope I don’t have any pain flair ups that necessitate me needing more than what I have. I am like so terrified of getting flare ups. It really activates my PTSD. I start having flashbacks of what it was like having CES all over again and then the surgery and all that I went through to get to where I am today. Not that I am 100% better, I am not. But at least I am not walking with a walker or cane all the time. It kills me when I see an old person with a walker when I am on the bus. It just reminds me how lucky I am that my doctors knew what I had. Some people that have CES or Cauda Equina Syndrome weren’t so lucky and have to use a cane or walker to get around. Some are worse off and can’t walk at all and need a wheelchair because their legs are so weak.

Whenever I get a pain flare up I tend to go into flashback mode. It is not a pleasant experience. I remember things that have happened in the past as if it were happening today. I get anxious and nervous. I start worrying. It is the worst feeling in the world. And then I want to get rid of the pain. If the pain meds don’t work, I usually want to cut. Cut off the affected limb so I am no longer in pain. Or just stab myself to relief the pain. I know that doesn’t make sense but it is what runs through my head during these times. It is awful. And I can’t usually move during these flare ups. I am incapacitated. I can just barely move enough to down some pills and hope it take away my misery. I hate being bedridden with this type of pain. I always keep my cell phone handy just in case I need to call someone and have them help me. Because my mother is deaf and with my closed bedroom door she is not going to hear me nor does she have the mobility to go up the stairs and help me, but at least she is someone I can call in case of emergency.

Ramblings 26

by Midnight Demon, posted in CES, Chronic pain, depression, mental disorders, mental illness, mood disorders, psychache, suicide, suicide attempt

Today my story about my attempt was posted on another site. I had positive feedback from it but I am kind of worried not everyone will be so positive. I still am nervous about a lifetime commitment somewhere.

For about a month now I have had a cough that won’t go away. I see my PCP on Wednesday for pain issues so I will bring it up then. I just hope that I don’t have to go on antibiotics as this thing isn’t clearing up on its own so I might have to. I hate taking antibiotics. Because I take so many meds, it’s sometimes difficult to pick on that won’t interact with the others. And I am pretty picky about which one I can take versus those that I have problems with. Class called Cephalosporins will do nothing for me. Cipro works ok but a Z-pak won’t do anything. It will just cause the infection to recur a few weeks later.

I took a shower and brushed my teeth today. I was too lazy to go out today. I wanted to but just couldn’t find enough energy to get dressed. I watched some TV but didn’t watch my Bones. I just can’t seem to sit long enough to.

Been thinking about my ex today. My MP3 shuffle played our song or rather the CD that I made her and made me think of her. I often wonder what she is doing and what she is up to but I can’t go back to her. We broke up because I couldn’t stand how she was not taking care of herself anymore. She was being blasé about her medical condition and it bothered me that she refused to seek help or medication to control it. Plus she has a little one at home with disabilities that I was fearful she was going to have a seizure and be out of it with her daughter around. Didn’t sound like I was going to get through her head so I just broke it off with her. Let her find someone else that cares and lives closer (she was also 90 miles away from me so it wasn’t going to work out).

My leg has been bothering me since last night but there is a big snow storm coming this way. Just what I need. I hate the snow and ice. Temps are supposed to drop to single digits after the storm so it’s going to get cold, supposedly. I generally have the believe of I’ll believe it when I see it.

Pain has been minimal so far but I am sure it will get worse as this storm rolls through. I know that much because I wouldn’t be in pain if it was nothing. I’m just a human barometer. What I am debating is taking my pain meds now or waiting closer to bed time. But I think I am going to take my big gun med as this pain has been going on for more than 24 hrs and the small guns haven’t touch it.

Listening to Carrie Underwood. Love her voice. And her song “Wine after Whiskey” is touching me right now. Guess it’s left over ex stuff…