Category: CES

Shouldn’t have gone out today

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

Shouldn’t have gone out today

Today is a CES day that I should have listened to my body instead I gave into my coffee needs. What does a CES day entail, well, when it involves the bowels, you stay home so you don’t shit yourself. And today was one of those days. I thought after going twice already I would be ok. Wouldn’t you know that the third time was the trick?? I was not even a block from my house when my bowels erupted. I was hoping to make it and I failed. I feel humiliated and disgusted with myself. It’s not every day that this happens. And it was more than just sharting (farting and shitting at the same time). I didn’t even fart, which to me was the worse of it. Then I could say that it was more than a fart but not this time. I soiled myself and I felt degraded like I do every time this happens. I was having a good day and now I just want to die from the humiliation I feel. Worse part is that I can’t even share this with anyone but myself and therapist and maybe my support group.

As I was in the bathroom, I decided I needed a shower. I had to. So I asked my mother to bring me a towel. She saw that I didn’t have underwear and figured I had messed myself as I was crapping my bowels out. She didn’t say anything. I don’t know if I was relieved or angry. But at least I didn’t have to explain myself. I think that horror would have really brought out the cutting urges. I stood longer in the shower than I probably should but didn’t care. I know my ankle is going to thank me later for this indiscretion.

I am listening to David Nail because that is what kind of mood I am in. He sings sad songs and it resonates with me. I need that kind of soothing that his voice brings. I think he is the only male artist that touches me this way.

I’m waiting to hear back from my therapist. Hope she calls soon.

I am a survivor of suicide attempts

by Midnight Demon, posted in blogging, CES, Chronic pain, chronic physical pain, depression

I wrote a quick blog yesterday about the stigma of suicide. I asked wouldn’t it be nice to say to people you survived suicide like you survived cancer? I listened to the WEEI radio to hear my Sox game and it amazes me how quick people are to say they survived cancer but hide in the dark when talking about taking their own life. Both people are fighting for their lives. Granted one is bodily and the other is mostly mental but it still begs to question why there is a different in the illness. Suicide is the result usually of untreated depression or other mental illness. Most people think that it is depression that causes people to think about suicide but it is not. You can be psychotic and think about killing yourself. I know. I have been through it with my psychosis. I have had voices tell me to kill myself, in fact in one of the delusion it was considered a command order. Psychotic disorders often get tossed by the way side when considering suicide but a recent article in JAMA showed that it can pave the way to catching suicide attempts if asked about. The study showed that teens with psychotic symptoms are more apt to attempt suicide than non-psychotic teens.

But you don’t need to be in a mental state to be in the suicidal mind. That is what is so devastating about suicide is that people before they commit suicide look and act “normal”. I know that people who are suffering from cancer can look anything but normal. They can be bald or look skeletons. They are really fighting to be alive while those that are thinking about suicide just want to die. People with cancer are the lucky ones. Their suffering will end. People know this. But those of us with mental illness we continue to suffer and when we decide to give up and end the fight, we are looked down upon and treated often inhumanely. We then feel ashamed of ourselves for trying to end the pain and failing at it. We end up in the hospital to “save ourselves from more destruction”. All we want is peace, same as the cancer patient that is terminally ill. We want the suffering to end.

To some people, they believe that suicide is preventable. To some people it is but you are not going to catch the majority of people most at risk. You cannot stop every suicide. People have the right to kill themselves if they so choose to do so. It is the ones that survive that have the right to speak about it. Because those that survive depending on their reaction to their own attempt might be clues to whether they survive or not. I have survived the past several years despite making elaborate plans on killing myself. I really want to die but my reasons for living keep me going. I don’t like it but I can’t picture my sister telling my eight year old niece that I have passed on. She is my baby and I don’t want to hurt her or my other nieces or my nephew. My nephew is what kept me going during a very difficult time in my life. I wish that I had succeeded but because I didn’t, I got to see him grow into a man and graduate from high school. I didn’t think that he would or that I would live to see the day he did.

It saddens me that I am still alive when all I want to be is dead. I don’t know why I preserve. Right now I am in a lot of pain and I don’t like it. I don’t know if I am going to get any sleep tonight because of it. Where is the training of medical doctors to handle chronic pain? There isn’t any. I don’t get asked what my mental status is during medical visits anymore. It is just assumed that I am ok because I have a smile on my face. Didn’t matter that the day before I was in so much pain that I was in bed all day, taking pain pills every four-six hours. Maybe I was happy because I could finally get out of the house and go to my doctor’s appointment and I wasn’t in pain. The siege was over with. But now it has returned and the meds have not kicked in yet to knock my big ass out. I am tired of living with chronic physical pain all the time. It sucks the life out of you, what ever life is. And if it doesn’t, your mental illness will surely do it for you. There is no reprieve. No relief in sight. And that is why suicide is what it is. For people that survive it, they should be able to say that they have. But no one does. There are a few people that have been coming out slowly through the AAS blog but I fear that the ones that don’t come out, are the ones that will try again and maybe succeed.

I am a failure of suicide attempts. And because it has been so long since my last one I am not going to try again any time soon. Least for now. So I am in pain and I have one option left to me…to suffer.

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?