Category: physical pain

A letter to bozo

by Midnight Demon, posted in bipolar, Bipolar Disorder, blogging, cauda equina syndrome, CES, Chronic pain, chronic physical pain, depression, mental illness, mood disorders, physical pain

Dear Bozo,

It’s after midnight. I am really tired but I am in a lot of pain. I am feeling depressed because a fellow blogger wants to end her life. I have become good friends with her and it makes me sad that there is nothing I can do for her except be there. I hope she doesn’t hurt herself tonight.

Sox are back in last place. I feel like I am, too. I feel like I am at the bottom of the barrel and I can’t get out. The shit just keeps piling on and I can’t get out from under.  Foot is absolutely killing me despite taking pain meds. I just took some ativan because I got a cramp in my other foot. That is all I need, both feet to be against me. I am such a shit.

I’m supposed to go out tonight with some friends. I always have a good time even though it wears me out. My friends don’t know this.  I have never told them. They are the only friends that I have kept in touch with since my disability and loss of work. I would hate to lose them or be left out of having dinner with them once in a while. It really is the only time I socialize.

I just don’t know what has brought on these feelings of worthlessness and insecurity.  Someone liked my commonalities of suicide and placed it on Reddit. Whatever that is. I have heard about it but don’t know more than that.  I just know I feel like the biggest asshole on the planet right now. If I was suicidal, I’d probably plan something. It gives me comfort knowing I am going to try and end my life. I don’t know why that is.  Maybe because it gives me an option and a way out of this darkness. I am so tired of fighting it. Why do I have to continue to live when I don’t want to?  It’s your fault I’m still here. And I hate you for it right now. I hate this guilt trip you have me bonded into. I don’t want to hurt you, yet you say that I will if I kill myself. I just want the pain to stop. If the pain stopped, both physically and mentally I wouldn’t be thinking of ending my life. I am just a scumbag that doesn’t deserve your care.

I didn’t bring the depression on. Unless the pain meds did, which they could have. Course, I am very tired right now and fear that if I don’t go to sleep soon, Hyde might come out. So I’ll stop here for now.

But before I do, my CES anniversary  is coming up in two weeks. I am feeling anxious about it for some reason.  I keep having the memory of when I was told and having to pull over because I was driving to see you at the time. How I managed to drive without injuring myself I have no clue. My back was pretty bad. I still think if i didn’t get it the 2nd time, I wouldn’t be disabled like I am today. I have huge anger that I don’t know what to do with. The stages of grief I guess. But I refuse to accept this. This should not have happened. Someone should have noticed me walking improperly after all those PT sessions I had. Maybe I should have been in an AFO then. I don’t know.  It’s all hindsight now. And it makes me very angry.

I know I’ll never be normal again, that I think I can live with. But being in pain is not part of the deal. Especially when they are making it harder to get pain meds. If I dont ever get my meds, it will be my death sentence.

I just don’t know anymore

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

I just don’t know anymore

I have been in pain for more than 24 hrs now so if this is a little squirrely, that is why. I just cannot take the pain anymore. It is driving me absolutely insane. I spent the last hour or so writing in my journal things that shouldn’t be mentioned in the blog (stuff my therapist wanted me to write). I felt so ashamed afterwards. I was stuck with images in my head of the events that happened to me. I just want to be dead again. I know it has been at least a month since I last felt this way. Certainly was around the time of Robin Williams’s death. I felt like it was my turn. Well, dammit, why the hell not? I am so sick of being in pain.

I have tried to control my pain but my meds seem to be ineffective. I think I might have to take the stronger meds to break the cycle. But I don’t want to because the last time I took that drug, Jekyll appeared. I am wicked tired and all I want to do is sleep and I know that if I take this drug, chances are that Jekyll will come out. And god only knows what he will write. I find it odd that I have two “alters” and they are both male.

I didn’t take a shower today. I got a migraine and then things kind of went downhill after that. My pain worsened to what it is now. It is throbbing like a SOB and stabbing at the same time. It hurts right at the joint where my foot and ankle bone meet. That area is the most painful right now. I just want relief. I have contemplated taking the handful of pain pills that I have left. It will really suck if I take them because then I will have NOTHING. I know I am going to run out of my meds before the 28th of this month. My doc is supposed to write a 28 day supply but he wrote it for 30 days. Big help, not! I don’t know why I told him I needed less pills. But then, things were going well and I wasn’t in pain as much. The past few months have been awful and I keep meaning to tell him I need more pills because it just isn’t enough but I keep forgetting. Plus I am scared that he will say no. I doubt it, but you never know. I bet if my pain were under control, my blood pressure would be too.

I keep fighting sleep. I know that if I go to bed now, chances are good that I will wake up around midnight or 1 or 2 in the morning. I took my meds so I don’t have to get up again but I might have to go to the bathroom. I drank a lot of water at dinner because I am dehydrated. I didn’t eat too much, just had breaded cauliflower for dinner. I wasn’t that hungry. Which is good because I feel bloated.

My mother just struggled to get up the stairs. Her life would be so much better if she would take something consistently for her pain. But nope. Won’t even take a damn aspirin. Pisses me off because she always complains she is in pain. I refuse to give her sympathy because I know there are meds out there she can take but she won’t so there.

I have the ceiling fan on despite it being cool outside. I have been having hot flashes for most of the day. It is only about 70 degrees in my room so I don’t know why I have to put the fan on but I am hot and I hate being hot. I think it is because of the damn pain I am in. 24 hours. I didn’t even do too much yesterday so I don’t know why I am in so much damn pain. But I guess walking is my downfall. And my sister thinks I will be able to walk a dog. Please. I can barely get to where I need to go without hurting myself and you want me to take care of an animal?? NO. Not happening. Get a cat. I will clean the litter box twice a day. That I can do!

I don’t know why I am in so much damn pain. It’s not like I did anything today. I didn’t go up and down the stairs too much, but maybe I did. I never know what is minimal and what is a lot. My body doesn’t bother to tell me until it has surpassed its limit and then tells me the next day or later that night when I want to fucking sleep. It is terrible. Normal ankle movement should not bring you such pain!!!

The only thing keeping me sane right now is listening to music. I need that muse in my head because without it, I think I might do something drastic.

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.

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?