I know I only posted a few hours ago but I am still feeling the need to write. The heaviness in my chest has not lifted and I am finding it hard to breathe. I just feel this tremendous weight on me and I don’t know why. I feel like my heart is going to pieces and I have no reason for it to be. Maybe I am going crazy? I just know that I hurt and I don’t like this hurt. I think I’d rather be in horrendous physical pain than deal with this heartache. Sadly, I already am in physical pain but I seem to be getting good at tuning it out. It only hurts when I try and move my foot so I try very hard to keep it as still as possible. That has what my life has become. Staying as still as possible. And I just feel broken and lost. My niece today really touched a nerve. She was just being honest. I just feel like I should be working at a “real” job, though my therapist tells me this is my “real” job. I can’t understand how my life went so badly in such a short amount of time. Four months is not even a season. Sure you have the middle of winter and the beginning of spring but neither were full seasons when I lost my jobs. granted I quit one at the end of Jan and then I was forced to leave the other the end of April. so technically it was three months of going from two jobs to none. All because of what? That is what is killing me. The doctors still aren’t sure what is causing my pain. They thought at first it was my back but that was ruled out with MRIs. Then they did MRIs of my leg, ankle, and foot. All negative except for some swelling. I say just cut the swelling out and see how I fair. I can’t go on living like this. I just can’t. I don’t think I will see the light of day again. These black clouds keep circling around me, day in and day out. I got to sleep with emptiness so vast it can fill the Grand Canyon. I am not on an antidepressant. None of them work for me. None provide relief. Yet my therapist thinks that I should be on one. I don’t see why. I will just become sick off them and will have to discontinue them after a month or so. My psychiatrist has nothing left in her arsenal to save me. My therapist is all out of ideas to help me. Yet I continue the course, hoping that there will be a light at the endless tunnel. They (my therapist and psychiatrist) see this light but I never do. It is too far away from me. But what they don’t see is my heart that is torn to pieces. I want to end my existence because the pain is too great. Yet these two tell me I can’t. One will be hurt and the other will hospitalize me. Why can’t they see how much I am pained? Maybe if they saw it, maybe if I describe it better, they will see that the only way to fix it is with my death.
Tag: physical pain
adequate pain relief and suicide
Was going through some old journals and came across an article on pain and suicide. This was the “first” study to find that moderate to severe pain caused suicide to happen. **clap, clap, clap** Tell me something I DON’T KNOW. I don’t get how they have to do a study in order for doctors and other mental health professionals to realize that any type of prolonged pain (physical or mental) is going to result in suicide. It astounds me, it really does. And the worse part is that these people are not being treated. That’s the other thing that drives suicide, untreated pain. Granted you can’t treat psychological pain like you can physical pain. There just isn’t a pill you can take to relieve psychological suffering. That is the sad part. But you can assess it. You can hear the person talk about their pain. That is all the person wants really, is to be heard.
Physical pain is ambiguous. And the study didn’t focus on any particular pain in the body. The researchers just asked have you had pain in the last four weeks and then they rated it. So there is no telling that this pain was coming from the head, back, legs, stomach, etc. Does it matter? I don’t think so. I just think that more doctors should ASK their patients if they are experiencing pain and how severe it is to them. And also ask if they are thinking about suicide because of this pain. But most doctors don’t have the TIME to ask these questions.
In the months after my psychiatric hospitalization, my doctor asked for three months if I was suicidal because of my pain or for another reason. Then, the questions stopped. He began to ask more about what was causing my pain and try and help me there. A few months ago he asked me again if I had suicidal thoughts. He then told me that he cares a lot about me and that he would miss me should I kill myself. That took me off guard. I know I have a good relationship with my doctor but do other patients have good relationships with theirs? And are the people that are prescribing narcotics regularly checking to see if their patient is at risk for suicide? My doctor has stopped asking me if the pain medication is adequate for me. Sometimes it is, other times it is not. And I think that finding an adequate pain relief regimen is key to saving a life.
I know that I am constantly complaining on my blog about my pain. But I have pain meds to control it. Even if at times it is inadequate. Do I think about suicide? Yes, I do. But I have protective factors that are preventing me from going through with my plan. And I hate these factors because I wish I could kill myself. I know that I will be missed by my blog readers, my family, my therapist and my psychiatrist. I have a sense of belongingness to these people and as much as they drive me crazy, they keep me here. So all I can do is write about my pain and hope that it helps someone to know they are not alone in their pain too.
answers about Cauda Equina Syndrome
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***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.
pain of emails at times
Midnight demons rise again
I was having a real painful night last night. The menses have stopped but the depression is still in full gear. I tried to stay “conscious” even though I was tired so that the demons didn’t come out and I sent some more good bye letters. I was doing fine until I couldn’t take the physical pain anymore and just posted a status on Facebook “everyone wants to turn a blind eye to the pain i experience every day. so be it. when they ask for something I will just tell them no can’t do it because of pain. maybe then they will get the message..I am too tired of fighting all my thoughts are dark and no one cares or gives a shit” . With me having posted this status, I was finally able to sleep. Then the interesting comments began. The latest one that I woke up to this morning is that one of my “friends” is going to kick my butt. WTH I don’t need that shit. I know she was joking, but come on! It so pissed me off and was so uncalled for. I wanted to reply a big FUCK YOU to her but what would be the point? I don’t remember posting the status anyway and it was how I felt at the time. I am just glad I didn’t email my psychiatrist like I really wanted to.
I did however write several pages to my therapist last night. I think the comp book is going to get filled up very quickly this week. I have been getting the itch to write. Sometimes it’s hard though because I don’t have a clear idea of what I want to say. Other times, once I do get started, it flows like a river. I don’t remember what I wrote about. Just some stuff that I wrote in my blog and how I was hoping that the midnight demons wouldn’t come out. Apparently, I was wrong. I am kind of pissed and I didn’t take my Neurontin this time around so it definitely is a psychological thing and not a medication thing. Like it would be that easy. After the Sox game is when I noticed I came apart. I just was really mad they lost again. And that the stupid fucking Rays won. We (Sox) still are in first place but I am not sure for how much longer if the Rays continue to win and we lose. I am getting very frustrated. But the bullpen just isn’t as strong as it was and the bats aren’t as hot as they were. It’s like both equations for the team have been null.
Anyways, so after the Sox game I noticed I got really tired and was going to go to sleep but I was playing my music and it was keeping me up, like fighting sleep up. I then had the urge to write something, anything. I really think that is when the demon came out. It didn’t take over completely, like it has in the past, as I was still trying to stay in control. But my mood just got wicked down and the pain in my foot and ankle went berserk. I think after my ankle and foot pain went nuts, so did I. I just lost control, hence why I posted that status on FB. But I felt better after I posted it and got some understanding responses. I didn’t get the rude response until this morning. I don’t get why people in pain respond that way. I don’t find it funny at all. And this person suffers from chronic pain too so I really don’t get it.
I still am feeling tired despite sleep most of the afternoon. My mother made some fish for supper so I had some of that. I really want some ice cream so I will probably go down to get it in a little bit, after I finish my writing.
My foot has been “good” most of the day, though now it’s fricken cold and hurts. This is not good because once it warms up, it will really WARM up. Even if I take my pain medication now, there is no telling that it will work or not. I have to wait till it warms up before taking the pain meds. I have tried taking the pain meds while anticipating and thinking it will lessen the pain but it doesn’t always work out that way. I really wish there was a pill I could take that would keep me pain free for at least 24 hrs. But there isn’t.
Last night I read a report about Gmail not being private anymore so I was off switching email accounts on my support group. I now use a Hotmail address for everything and I have several accounts that I have made over the years. My main email I have had since being with MSN in 2001. I recently have opened one specifically for my blog. This is so I know which account has the specific things I need. One is my personal, one is for my group, and then one is for my blog. I know it might sound weird but I like it this way. It’s just another organization system in my head. The trick though is remembering the passwords!! Because the group is yahoo and I hate using Yahoo mail, I had to log on, again. My email got corrupted once so I had to say my account was compromised to get a new password. Now I wrote it down in my journal so I know what it is should I have to go back into it. I hate Yahoo. But I guess if you have a strong password to begin with you are ok. My other passwords are the same or I try to keep them same if possible so they are easier to remember.
I am so excited that my menses have finally stopped. I would jump for joy but that probably would not be good for my ankle.
midnightdemons7 
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