Tag: CRPS

Ankle Chronicles 5

by Midnight Demon, posted in chronic physical pain, medical, physical pain

Ankle Chronicles 5

I overdid things today, big time. My foot has been throbbing since I came home at two. I knew after I went downstairs to get the mail it would be the last trip I would make for the day as my ankle just said a big fuck you. I am feeling out of sorts and just maybe going a little nuts as I keep thinking my foot is talking to me. It is really angry at me and I keep wondering why the hell didn’t I sit down more today while waiting for the stupid bus. I had a half hour to kill. I was bored. So I walked to the meat market thinking I would get some steak tips for dinner but they were really expensive. It’s just my mother and I. I don’t need like fifteen pounds of tips. That was all they had and they were like twenty bucks. I suppose I could have frozen them now that I think about it. But I knew I would forget about them and I would be the only one to eat them as my mother doesn’t like steak anymore.

I have been writing in my journal about how angry my foot is at me and I keep thinking why. I know it is because I stood for a long time, but I am wondering why I had to have nerve damage in this foot. Compared to my right, it’s like it is louder than my right. I hardly notice that I feel my foot. My left is constantly screaming hello, I am here!! But that is it. I can’t talk back to it. I can’t tell it to shut up. I can’t tell it to go shove off. At times, I feel like it isn’t my own, that it belongs to someone else. I am not feeling that way now. I just want it to stop throbbing and burning. From my ankle bone down to my toes is a constant, heated throb. And I don’t mean heated as in upset. I mean heat as in hot fire. My ankle and foot feel like it is on fire. It’s not, I can assure you but it just feels like it is. I so want to take some Neurontin tonight and I might. Now the stabbing pains start. Someone is stabbing me with a knife in between the bones on the top of my foot. I can’t breath. The pain is really bad. I can’t move my toes anymore and that has set off some PTSD symptoms for me so I am in a hypervigilant state. I need to take some Ativan to calm me down. I would take some more pain meds but it’s too early. I just took my last dose about three hours ago. I am supposed to take the pills every six hours. I might be passed out from the pain but that is unlikely to happen with my anxiety being high. I have been listening to Mary Chapin Carpenter the past few hours to try and keep my mood even keel. I need to take something but I don’t know what to take. I am so distraught and the hopelessness has started to fill my soul. I need sleep. I need something to distract me from this pain.

I remember what my life was like before pain hit me. I was an active person. I was working. Now I have just become this hobbled person. I just can’t stand it. Every night it is the same thing. Every day I have to put my foot out of the blankets only to put them back in a little while later. No matter what I do there is no pleasing it anymore. I can’t even ice it because it just makes it very cold and screws up the nerve pain even more. I wish it was a clear case of CRPS but no, it’s got to be half a fricken case. A mild case. Or maybe not a case at all. Maybe this pain is all in my fricken head and I am crazy. I just know that I want to stop hurting. I want to be able to do stuff for more than a few minutes. I want to be able to walk without restraint. But that isn’t going to happen anymore. Hasn’t happen in three years and every time I push myself to go farther, it always backfires. Which sucks because the depression is lifting and I have all kinds of energy but no place to put it. I feel like such an imbecile.

Fuck it, I am taking my meds early. To hell with the consequences. I am in deep and serious pain that is driving me fucking nuts and I don’t care anymore.

Reflections on the Year

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

Reflections on the year

This time last year I was deeply in physical pain and psychological pain and in the throws of a yet another nasty depression. I was asked to do a writing project for a friend and I didn’t think I would make it. I was sure by this time, on this date, I would be dead. And if I happened to be alive on Dec 17th, I would surely die by my own hand. I promised myself that if things were still the same, that this heaviness that I felt in my chest were not gone, that the pain in my ankle/leg/foot were not decreased, I was going to end things, permanently.

This year, things are still not a hundred percent better but things are less. My depressions are bearable when they hit. I have Wil Wheaton to thank for giving me the tidbit that my brain is not working right and that things will pass and be better tomorrow. My suicidality, though still a deep part of my soul, has decreased to the point where it is just thoughts I ruminate over and then give up. I figured out with the help of some books that this is always going to be a struggle for me, that my depression and pain are always going to be there. But like a former therapist said to me, you don’t always have to act on what you are feeling. These days, I am a little bit more hopeful about the future, though I don’t always see it. I still get hopeless every once in a while but it doesn’t last forever like it once did. I find that writing my blog has been a life saver for me. Mr. Hyde hasn’t come around in almost two months now and for that I am grateful. I have people in my life that have helped me see that I can succeed, even though I am disabled. It took a long time for me to accept my disability. Took longer to grieve it. But eventually, when I realized that part of the depression and suicidality was the grief I was not mourning, I took it apart piece by piece and wrote about it. There was nothing I could do about the pain except wait for the pain meds to work and for that I grateful that I have it. Also emailing my psychiatrist about the depth I was in helped as well. I don’t know if I am still going to have the same doc in 2014 and that scares me. I know that getting pain medication is going to be harder to get with new doctors and even harder as government rules will dictate the rules for prescribing rather than relying on clinical judgments. I don’t know what I will do then. But that is not my worry for today.

I don’t know what brought about the change. Maybe it was having a daily contact with someone miles away from me, urging me to continue my writing and work on a book. Maybe it was a little of owning the depression and taking charge of it, that it doesn’t have to rule my life like it would love to. I just know that I feel differently than I did a year ago. And though the impulses to kill myself are still a threat, I have a therapist that is behind me like a fungus that won’t go away. I really doubt without her countless sessions I would still be here. She really has been the one person that I can always rely on to be there when my mood is dark and gray. We might have our arguments about treatment but I know that she believes in me that things aren’t always going to be so bleak. I guess I have more people in my life now that believe that I can do things where last year I didn’t think I was going to survive my own lethality. I have been tested a few times this year to end my life. I have made several plans before today to end my life this year. My therapist can account for that. Though I have only had one psychotic break this year that required hospitalization. My hospitalizations have been fewer in recent years than they were in the past. I think that is more because I don’t think they help as they once did and that is a shame. You don’t get the care I once relied on.

Lastly, I have to thank country music for without listening to the same songs over and over for hours of despair, I doubt I would be able to make it though the horrible nights when I couldn’t sleep, either because of pain or despair or both. It is the one genre that I can relate to every song and let my brain do the escaping when I was writhing in agony. From songs like “water tower” by Jason Aldean to “Crash my party” by Luke Bryan, to Taylor’s endless songs and lastly to the other artists that I have followed but are not so popular, Casey James and Cassadee Pope. Without music, the heart just doesn’t heal from pain.

you learn to live with it

by Midnight Demon, posted in blogging, cauda equina syndrome, chronic physical pain, depression, suicide

You learn to live with it

It didn’t happen overnight. It didn’t happen in a week. It took some time but you learned to bare it. Except on nights like this when the pain keeps you awake and nothing eases your mind to bring on sleep. You think of death as your only way out. You think of what more your doctor can do to ease the pain but he doesn’t know because it’s fucking midnight and he’s not on call anyways. Besides, they don’t want to hear you cry in pain. They just want you to live with it. And that is the toughest thing to do.

I have been battling pain since seven tonight. And it’s been a trigger for me. CES started when my left leg went out on me and then I was left with foot drop. I wasn’t told to live with it. I was told my ass was going to have surgery for a condition I had no knowledge of. I still don’t have complete knowledge of cauda equina syndrome because it varies in so many people. Sometimes the right side is affected. Sometimes it is the left. In my case it was the left and I still have nerve damage twelve years later.

Yet I haven’t been told to live with the pain. No, not yet. But you have to or you lose your mind or your life. It is a conscious effort every day to not stare at the bottle of pills or some other weapon of destruction and not think, why not? You have to take the walls down piece by piece of the strength you have and build it back up again with new ones to block the pain out the best you can. But sometimes, like tonight, the walls fails you and you are in mega pain. My foot/ankle/leg are hurting all at once and all you want to do is scream. But you can’t because it’s after midnight and everyone else is asleep. Thoughts of wanting to amputate run high on these nights. It’s a good thing there isn’t a chainsaw in the bedroom.

Meds kicking in is a joke. They may lessen the pain some but they do nothing to ease it 100%. At my best, the pain is always on the level of 3 on a scale of 1-10. At my worst, like now, it can be an 8-12. So I will have to take a third pain pill to quiet it down or I won’t be waking up at 0645 like I need to. Got to take dear old Dad for his tests.

I hate my leg right now. And I should be able to live with the pain. And I will. But not tonight. Tonight I am writing and writing until I pass out because people should know that despite having surgery for CES, you are still left in pain. It is called nerve pain and it sucks. Nothing eases it except narcotic medications or some anti-convulsant drug and that is some of the time. Oh how I wish I could call my doctor now. Have him see the veins popping out on my foot, how swollen my ankle bone is and how I can’t get it down with ice or elevation.

But I got to live with this? I can’t kill myself? That really sucks when you know you are in so much pain, physically, and you can’t end your life because of it. I have too many people I’m responsible for. People say they will miss me. I often wonder if that is true.

My psychiatrist told me tonight to take my meds and get some rest. How am I supposed to do that when I got pain this bad? I keep hearing her voice telling me to go to bed. But I can’t sleep. Pain is just too fucking bad.

I didn’t do anything to cause this. I didn’t stand too long, I didn’t walk too far. I didn’t go up and down the stairs too much today. Well, maybe I did, now that I think about it. I went downstairs a few times to empty my recycle bins and get rid of some boxes in my room.

I wish I could just disappear, permanently, where there is no more pain and no more agony. No more depression. But I don’t want to be happy all the time. That would be too weird for me. Just being content is all that I want. Content means being neither sad nor happy but not being miserable either.

I just want the pain to stop permanently. Then I maybe I could live my life a little better. Third dose of meds and an Ativan have kicked in. And this is how I live with it, without putting a noose around my neck. I put my hat on backwards and I write, until the meds kick in.

It helps to write. It really does.

a loss you can’t recover from

by Midnight Demon, posted in blogging, chronic physical pain, mood disorders

I got a lot done today, thanks to my mother waking me up before nine this morning. I finished my editing and worked on my introduction. I also helped her put up the Christmas tree. My sister is going to help her put the lights on later because I suck at that.

I am getting a little worried about how my intro is going. I started writing about my illnesses and then starting talking about my CES injury and where I was at with that. Then I felt like it was TMI for the intro. It also was filling me up with grief so I had to take a break. I then emailed my support group and asked if that was ok to put. I just don’t know how much of the CES I want to put out there. I know I should probably put it in one of the chapters that does deal with CES. Maybe I will write it out and then cut and paste it there as sort of where I am today section.

I got pretty overwhelmed with emotion and PTSD symptoms. I just couldn’t handle the anxiety of what I was writing. And I couldn’t believe what my life has been reduced to. It is a loss that I can’t recover from and I don’t know if I ever will recover from. That what sucks with CES. You might recover but it takes months or years even. As far as my ankle goes, I don’t think there will ever be a recovery. I don’t know if it will get worse, only time will tell. Until then I just try not to use it as much as possible because it gets angry when I use it. I know it shouldn’t do this. You should be able to use your ankle the way you are supposed to at anytime. But for some reason with my left ankle, the more I use it, the more pain I get from it. Like today, I went up and down the stairs I don’t know how many times. I went to my sister’s apartment on the first floor for coffee, then went back up to my room. After I finished my coffee I went downstairs to rinse the cup off. Then went back up to my room. I did this repeatedly most of the day today. My sister needed some help cooking some chicken wings so I had to go back to her apartment (she lives on the first floor while I live on the second). I must have made at least a half dozen trips. And I know come eight o’clock tonight or soon after I am going to be hit with pain. I sort of prepared this time. I took some pain meds a little while ago to prevent pain from happening. Sometimes this works and I hope this time it does. I don’t want pain that I had last night. I had zaps going through my toes that were wicked painful.

I still am tempted to call my therapist tomorrow to chat. I just have been going through a lot of pain that is driving me whacky the past few days. I don’t feel like doing anything, other than cutting my ankle off. But I don’t have any big power tools to get the job done. I told my sister I want a chainsaw for Christmas, but I don’t think she took me seriously. I often wonder if I could really do such a thing. I know it will make a mess. All I keep picturing is the scene from Scarface when the guy dismembers the other guy with a chainsaw in the bathroom of the motel room. Not a pretty picture.