Tag: chronic physical pain

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?

pain of emails at times

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

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.

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”.

Night blog

by Midnight Demon, posted in Chronic pain, chronic physical pain, mental disorders, mood disorders, suicide attempt, writing

this is the first time that I am writing a third blog in a day. I am sorry for the posts but I am in so much pain I don’t know what else to do. I can’t say that I did too much because I didn’t. I just know that my foot is on fire and there is nothing I can do to stop it. I have taken meds to quiet things down and I am hoping with the Ativan I can get some sleep in a little while.

I actually am afraid of sleeping for fear of having that weird dream again. Or another one. I also don’t know why I had an anxiety attack on the bus again. I guess it is getting to be paranoia that I won’t be able to get off the bus at my stop because I don’t want to fall down. My balance on my right foot has been off the past several months, especially when I am turning. I seem to lose my footing because I don’t know where my foot is. It is so frustrating that when I am seen by people it looks like I am drunk.

I got so upset about my menses after my last bathroom break I needed to talk to someone. I just can’t handle this menses situation anymore. I am now bleeding more than I did last week, which technically, I should be bleeding less not more at this stage of the game. I am not a reproductive expert but I know when a period should end. and after seven fucking days, it should be OVER. I should not be continuing to bleed dammit. I am sorry if this sounds gross or disgusting but it is how I feel. I am so upset by this. I am supposed to wear boxers not pads all the time. I am supposed to be a male and because I am not in the right body, this shit happens and I am distressed about it. I was texting to a friend tonight and as I was, I was also writing to my therapist about hanging myself. that is me, I am splitting tonight. In one instant I am texting about marinara sauce and in my writing I am writing about the length of rope I should use.

I should be sleeping because I took some neurontin. But the stuff has not kicked in yet. I also just took my pain meds and some ativan but I am still fucking hyper and in pain. I bet the pain is going to go away first and then the ativan will kick in to put me to sleep. I just hope I don’t wake up at four in the morning again. that is what has caused all this bullshit. I am not sleeping at all through the night. I can’t remember a night where I slept past eight in the morning. It pisses me off. I think I should be up all night and then just sleep during the day. But then my mother thinks that I sleep too much. How can I sleep too much if I am not sleeping during “normal” sleeping hours??

I finished my Lincoln book that I was reading. I just have to read the Epilogue. but I really kind of don’t want to. I like the book because at the end it gives the same speech in the end as in the Lincoln movie. Maybe I should watch that tomorrow. I have not watched it in a while.

God this pain is unreal. It feels like someone is trying to shove a hot poker through my foot. I know it is nerve pain but I usually don’t get the hot poker feeling so I am not sure what that is about. I hope that my CRPS is not getting worse than what it is. I have been getting “hot flashes” in my foot the past several days now. My foot just feels really hot but when you touch it is cool. I don’t know what is going on. I am scared that the nerve damage is spreading or that I somehow twisted my good part of my ankle and now it is sore. I won’t know for a few weeks because that is when I see my PCP. By then, the pain could be gone and I would look like a fool. Either that or the pain will change to something else. I have had so much different types of pain in my foot I think my doc thinks I am making it up just so that I can get pain meds. I swear I am not. It’s just that the worse part of the pain happens at night and not during the day. Though this type of pain, the hot poker, seems to be happening more during the day and then gets worse at night.

Because of this I am constantly thinking of ways to end my life. The problem is that I don’t want my nieces to find my body. And so I can’t kill myself at home. I wish I could just chop my foot off right now. It is so killing me. I know I am not alone with my thinking of killing myself because I am depressed and in pain. That some how comforts me but at the same time it doesn’t. I know that I can’t beat this diagnosis. the pain changes too much for anyone to really believe me. how can they when one day I say that it is a hot poker and another time I say that it is like a barbed wire going though my ankle? or that my foot explodes in pain and I can’t move my last three toes. This doesn’t happen during the day. it only happens at night so when my doc examines me, I am not hurting. I don’t get the exploding pain, the hot poker, the barbed wire. It is SOOOOOO frustrating!!!! I don’t know if my doc believes me. I know my psychiatrist does and my physiatrist does. but I don’t know if my PCP does.

This is what I think about at night, when I can’t sleep. This is why my blog is called the midnight demons because that is truly when the demons come out, either mentally or physically. it truly sucks!