Tag: CES

Horrendous day, just for a cup of coffee

by Midnight Demon, posted in blogging, depression, mood disorders, suicide

Horrendous day, just for a cup of coffee

There was supposed to be a 13:25 bus out of Sully Station but it didn’t show up until 14:00. Talk about being late. I would have reported the bus to twitter had I thought about taking the bus number down at the time but I was too discombobulated to think of it. I caught the next bus to Davis so all was good but I was so mad that I couldn’t sit and edit my book like I wanted to. I just didn’t have my brain power, even with my mocha. I might do some of it at home later but for now I am just going to rest and wait for my friend to go to the gym. We are supposed to meet up today and I hope that we do as we have not seen each other in months.

I am feeling a little better emotionally today, though still feel the depression is over me. I don’t have a lot of physical pain today though I am sure after waiting forty minutes for the stupid bus my leg is going to flare up soon. I hope it doesn’t but you never know. Part of the reason I got up so late was because my leg was in contorting pain last night. I was having weird dreams again and kept waking up from these dreams in pain. I didn’t keep track of the pain meds like I do when I am awake so I guess I will have to figure it out later on.

I just got an email from Medscape or in the news that the FDA wants to change my pain medication to a schedule II class. I don’t know what that means but I know it isn’t going to be good for me if they succeed. If I can’t get my pain medication, I know my doctor might as well sign my death certificate. There will be no way for me to function with NO pain medications at all. I know just the thought of having no pain medication is enough for me to become suicidal. I know I don’t really need no prompting as my thoughts are there anyways but at least if my physical pain is controlled, I can usually handle my mental pain. It is when BOTH are raging that I am in a suicidal crisis. Lately, my mental pain has not been too bad. I haven’t been as hopeless as I have been in a LONG time. I am not saying that I am thinking about a future or stuff like that but I do look forward to tomorrow more than I have in the past. I don’t know why that is or why it has changed. Frankly I don’t really care. I know my therapist would love to tease it apart and analyze it to death but I really don’t care. Being a little hopeful is better than being hopelessly depressed. Maybe one day I will think about my future but I am not there yet.

Today is my youngest sister’s birthday. She is at the Patriots game and I just got a text saying that there will be a special pre-game ceremony for the Red Sox as they are WORLD SERIES CHAMPIONS!! I still cannot believe it. I have not watched the game in its entirety yet. I am still in the inning where Stephen Drew hits his solo home run. I could watch that over and over and over again. This guy has been in a slump and soon as he gets his first pitch he drills it out to the bullpen. SO FRIGGEN AWESOME! Then to watch Ellsbury miss his home run was so cool. He got a double on his first or second pitch. Then they intentionally walked Ortiz. I could go on about this but I won’t. It just makes me happy that I lived to see the Red Sox win another championship. That is three in my lifetime. So awesome.

I wish I could say that my suicidal thoughts have been gone since baseball season came to an official close but it hasn’t. I don’t really think my thoughts will ever stop as they have been with me for so long. I guess it is just another thing I have to learn to live with.

answers about Cauda Equina Syndrome

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

Disclaimers:

***Material on this Website is provided for informational purposes only. It is not a substitute for medical care, rehabilitation, educational consultation, or legal consultation. This Website contains general information which may or may not apply to individuals. This Website can not and does not address each individual’s situation and needs. I encourage all persons with chronic illness, their family members and concerned parties to seek professional advice for any specific questions and concerns. I have made every effort to insure that content is accurate, correct and current and am not liable for any unintentional errors. Links to other Websites and contacts have been carefully chosen, but do not imply endorsement and I am not responsible or liable for their information and contents. Under no circumstances, shall the authors and publishers be liable under any theory of recovery for any damages arising out of or in any manner connected with the use of information, services, or documents from the site.***

The information in midnightdemon is not intended to substitute for medical professional advice but is to be used only as an aid in understanding this condition. This site is not maintained by physicians. No medical decision should be made based on information in this site. A physician should always be consulted for any health problem or medical condition. This site is a compilation of CES patients’ thoughts, ideas and discussions, which we hope you will find useful, but it is not medical advice.

My doctor is an idiot at times, especially when it comes to treating CES. He thinks that because I have no back pain, I should be ok. What he doesn’t realize is the damage is in my foot/ankle and that is what is causing me the most pain.

WHAT IS CES?

The syndrome arises through nerve damage to the cauda equina, the horse’s tail of nerves that come after the spinal cord.

There is a specific pattern:
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Severe pain in radicular (nerve root) pattern: back, buttocks, perineum(saddle area), genitalia, thighs, legs.

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Loss of sensation: often tingling or numbness in the saddle area.

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Weakness: in legs, often asymmetric (one side)

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Bladder/bowel/sexual dysfunction: incontinence / retention of urine; incontinence of feces; impotence/loss of ejaculation or orgasm

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Loss of reflexes: knee/ankle reflexes may be diminished, as may anal and bulbocavernosus. (a muscle of the perineum, the area between the anus and the genitals)

Any of these symptoms arising suddenly is a medical emergency and should be treated as such. These are the red flags of CES. You do not need ALL of these symptoms to have a case of CES. Any compression of the Cauda Equina nerves (shown through an MRI) IS CES!

I have had CES, Cauda Equina Syndrome, for the past 12.5 years. In the first few months it was difficult. I didn’t have supportive people in my life I could go to because there was no one I could find that knew what CES was. Recovery was slow. Painfully slow. It took almost a week till I was able to move the toes on my foot after surgery. It took almost three months to learn to walk with just a cane. Luckily the first go round did not affect my bowels or bladder. I had some retention of the bladder but this was thought to stem from my use of opioid medication. My surgery was at the L4/L5 level on the left side.

My second surgery (yes you can get CES twice) was at the L2/L3 level and it really caused me to become disabled five years later. At first my left leg was affected and still is. I still get nerve pain in my thigh at times, especially if I sit too long. My ankle/foot is another matter.

When I first got CES, I fell and sprained my left ankle while it was numb. Because I had no sensation in my foot/ankle I didn’t realize the extent of the damage until feeling came back, weeks later. Then I resprained my ankle in 2010 and again in 2011. This invariably lead to a condition known as CRPS (complex regional pain syndrome).

I have what I term CES-Lite. I didn’t have the textbook case of CES, where you lose function of your bowels and bladder, sexual function, weakness in one leg or both, loss of sensation in the saddle area, etc. I just had leg and back pain. My CES was caught within the 24-48 hour window. Anything greater than that risks permanent nerve damage.

It is possible to recover from CES. You just have to give yourself a LOT of time and perseverance. What one goes through is not going to be the same for another, even if they have had the same surgery at the same level. It is possible to walk again but you need to work hard at it. Going to a physical therapist that has had nerve damage experience is very helpful. Typical recovery time is anywhere from 9 months to two years or longer. It all depends on the circumstances the individual has faced and if the surgery itself didn’t cause more damage. This is all my opinion and I am not a medical professional. I am just writing this to inform those that come to my site looking for answers to these questions.

See my page about CES 101 to help with nerve pain and other complications from CES.

You know you’re having a bad day when

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

You know you’re having a bad day when…

You know you’re having a bad day when you wake up and a half hour later you are in severe pain. I just can’t believe my foot acted up. But then, this has been happening for the last few weeks. I can’t stand it anymore. I lose sleep because I am in pain and then when I do wake up, I am in pain again? It’s not fair! Usually my day time hours I am in manageable pain. It has gotten to the point where I don’t even notice it anymore. Now all that has changed. I don’t know if something else is going on with my foot, if I did something to cause it to be this way or if it is just nerve damage. I don’t really care of the cause, I just want pain relief. Luckily taking pain meds in the morning are working but it leaves me exhausted the rest of the day, even with a cup of coffee. Though my Starbucks funds are running low, I won’t be going there soon until my next pay period. I guess I over indulged when I bought myself some treats. Can’t help it. I love their coffee cakes.

Yesterday I was reading my support group email and a friend was telling the group how you need to mourn the loss of your old self as you are never getting back to it. Then a fellow blogger wrote the same sentiments about her illness and how disabled she felt but didn’t realize how much of herself had gone by the way side since becoming ill. She was crying as a way to mourn that loss. It got me thinking…maybe I am so suicidal because my grief is just too great. I got CES, Cauda Equina Syndrome, at the age of 25. It is a syndrome of nerve damage caused by compression of the cauda equina nerves, the horses tail, that is at the end of the spinal cord. These nerve control the function of everything below the waist, from leg movement, to going pee and having a bowel movement, to sexual function. It also controls sensation and proprioception, the awareness of where your legs and feet are. Once this is gone, your balance is affected. You might lose control of one or both your legs. You might not walk correctly anymore.

I have been through a lot the past year and a half. I have been diagnosed with a nerve condition called complex regional pain syndrome (CRPS), which is the chief source of my foot/ankle/leg pain. It is caused by already damaged nerves and aren’t I the lucky one to get both conditions. Since I have been diagnosed, I have been really depressed. I know there is no treatment other than opioid therapy. Though I have been in therapy with the same therapist for the last twelve and a half years, I still have not thought how much these conditions have affected my life until now. I no longer can work. At one time I was working three jobs. Now I can barely do one. Before going on disability, I was working two jobs. I wasn’t happy. Both jobs were stressful and caused me sometimes sleepless nights. But then I sprained my ankle and everything started to go down hill after that. I couldn’t figure out why the ankle, which should have healed in the allotted time, was still causing me pain. Why my leg still had swelling, why my foot and ankle were swollen. It didn’t make any sense. I saw one doctor after another. Podiatrist, orthopedists, physiatrists, neurologists. None could give me a clue until the symptoms became worse and a picture of CRPS started to emerge. By that time, I was having difficulty working both jobs. I ended up going to the emergency room in severe pain, pain that was causing me to think of suicide as a solution to end it because nobody could help me. I went to physical therapy and they were the ones to notice I wasn’t walking correctly. My foot does this swing thing that pulls at muscles it’s not supposed to while I walk, but only does so when I become fatigued. Which, one physical therapist showed, happens very quickly. And that is because I never regained my strength in my foot after getting CES. I never thought that at the age of 36 I would be disabled. And it hurts. Not having the social support of my coworkers anymore hurts. Not having contact with people outside of my family hurts. My friends that I thought would always be there are there no longer. They all went on with their busy lives and stopped texting and calling to see how I was doing. I don’t blame them. But I do miss them.

I guess when I have had uncontrollable sobbing episodes it was because of my grief that I have been avoiding all this time. I don’t know how to deal with it. I never thought that I would be in mourning. I never thought that I would lose my job because I couldn’t walk anymore. I still am able to walk just not for long distances. I can’t stand for more than twenty minutes without pain. I used to be able to do so much and now I can’t do anything. And because I am not financially stable. I can’t even go back to school while I ponder what my next move is. College is too expensive for me to afford. Even at the state school. I know I should put some time into getting a grant or something but I wonder if I am too “old” to get it. I have had to put my college education on hold because of my mental illness back in 2008 and I have not returned to school since then. But then I am not sure I can walk around campus and do the stairs like I used to. There is a lot of loss in my life on a very personal level. How do you mourn the loss of your functions? How do you get used to not doing something as “simple” as walking. I have had to relearn to walk again twice in my life. How many people can say that?

It makes me angry at times. I guess that is why I have been having fits of anger for no reason. I will just be in my room playing on my laptop or writing when all of a sudden these waves of anger will wash over me. I guess it is all part of the grieving process. And isn’t one of them denial?

Chronic Pain and Living

by Midnight Demon, posted in chronic physical pain, depression, suicide attempt, suicide attempt survivor

I have tried to take my life several times over the years. Currently, I am struggling with the difficulties of trying to stay alive. I keep coming up with plans to end my life. I give myself a date and when that day comes, I plan on ending it. This has been going on for a few years now. My therapist has been able to stop the constriction by telling me how my family will feel and how she will feel if I go ahead and take my life. I can’t help making these plans.

I have been depressed for as long as I can remember. I recently been trying to get at the “root” of my suicidality but the feelings evade me. I just know that between the ages of 5 and 8 something happened that made me want to take my life. And by age 10 I tried by putting a pillow case over my head. No one knew about this. I told my mother right before putting the pillow case I was going to kill myself but she did nothing. My confidence in her dwindled that day. I felt I could no longer trust her.

Five years later I am a freshman in high school and my parents had started World War III. They broke up and so did my wrist. I started cutting to relieve the pressure and pain. I used cutting to relieve the psychological pain that I was feel and it became my friend over the next seven or so years. Sixteen I was hospitalized and everyone found out about the voices. That was tough. I had wanted to join the military to get away from my family but having a psychotic diagnosis, I knew that I never would pass their tests. My career was over before it started and I fell into a worse depression. I kept on getting rehospitalized, like every three months, because I just couldn’t handle my life. I was getting worse and the suicidality was getting better. I kept on thinking that I was the end.

As I suffer from delusions and psychosis, two years ago, I had a funny thing happen. I had the delusion and voice of Allah tell me that I should sacrifice myself so that the war in Afgan would stop. As you probably could tell, I was off my meds again. My psychiatrist doesn’t think that I should be on them all the time because of the side effects. I had to re-start taking them because I was the sacrificial lamb and I believed all this earnestly. Allah was talking to me and I was the cause of the war of Afganistan. The only way to stop the war was to stop my life. So again I planned another scheme to end my life. Only this time, like before, my therapist stopped me. I tried very hard to get her to see that it had to be done and to think of all the soldiers I would save by ending my life. It seemed like a good win win. Sacrifice one life so all could be saved. Isn’t that what the military does? Allah was not too happy when I started again on my meds. He was very angry. And he also wanted me to end my life anyway because it was better than taking medication. I agreed with him on this but I couldn’t end my life. By this time I was back in the hospital. I was still delusional, thinking I was still the “one” to save it all. But as the medication started working, the delusions dropped and I began to see more clearly. The voices went away except for my regular voices that I hear all the time.

Since that time, a lot has changed for me. I have become disabled and am in chronic physical pain. I now too have a plan on killing myself and it is to happen some time this year. I have had enough. No pill can adequately control my pain and it is a tough position to live in. I have a condition known as Complex Regional Pain Syndrome (CRPS). It is a neurological disorder in which the nerves are out of whack and no one really knows the cause. I was “lucky” in that I had nerve damage already to my ankle and then when I sprained it, twice, I think it allowed the nerve damage to spread. Of course I also don’t walk correctly. I can stand here and give a lecture about pain and suicidal but I am afraid it will fall on deaf ears or not really reach the people it needs to reach. I wish you could say that you can live your life with chronic pain but I would be lying. There was a time when I was able to. I had adequate pain control and could work a full time job. That ended when instead of being placed on a regular psych unit, I was placed in a detox unit and my pain medication was stopped. Since that time in 2002, I have not had adequate pain control and I am afraid to ask. I have my pain meds but it only treats the physical type of pain that I experience. It doesn’t help with the burning sensation or the other electrical type pain that I experience. And nothing helps these types of pain. No cream or pain gel works. It might be enough to take the edge off so I can sleep but I am always in a 3-4 state of pain every single day and when my activity goes up, showering, getting dressed, walking to the bus stop or standing while waiting for the bus, then the pain also goes up. Sometimes all it takes is my moving my big toe and I am in pain. And with each episode, I think about death. I plan it, I imagine it, I dream of it. I no longer am able to work because I can’t walk more than 300 ft. I can’t lift things greater than 10 lbs. I can’t stand more than 20 minutes. And I am only 37. I got this horrendous condition when I was 25. It was a long battle and I wish that I could say that not working is helping me. In some ways it does. It helps me to write and distress. My voices are at a lower key than they were when I had a job. I don’t have the delusions as much. I just am constantly suicidal. And maybe one day I will. But as one of the bloggers Toni has written, “I am not living and I can’t die”.