Tag: CRPS

second blog of the day 15-May-13

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

Second blog of the day:

Normally I would be sleeping by now as it is after midnight but no such luck. This is the second night in a row that I have been up because of pain. I just took a ton of meds and hope that it knocks me out soon. I am tired of being in pain for the past 72 hours. My ankle has flared up on me tonight and I don’t know why. That pain calmed down and now I am dealing with nerve pain. I feel like my foot is in a vise and my toes are killing me.

And I don’t know if because I have been hunched over on the computer for so long, my stomach hurts. I can’t seem to “straighten” out to make it stop hurting. Lying down only makes it worse.

I just wrote a journal entry about my plan. I am no longer depressed, just suicidal. There is a difference and me being this way is a little more dangerous. Because I just don’t fucking care anymore. They say pain changes you, well mine has. I have been in constant pain and there is nothing to do but stop it. Yet the meds I take have to go through the voices in my head to justify taking the meds. I know it sounds silly as I am just fight with myself about it. The voices know that I am in pain but yet they hope that I overdose on my meds. That is why I have to be careful. If pushed by them too much I might give in and take a handful of meds that I really didn’t mean to. I just hope I fall asleep soon. I hate being like this. I can’t say that I am a happy person because I am not. I might appear to be to other people but it is just a façade. I have to make the appearance that I am ok even though I am not.

My therapist wants me to make the trip out to Framingham to see her. She says we need the connection. I just think that she wants to keep me in her office so she can keep an eye on me. But I don’t want to drive out there. I know it has been a while and I really should go but I just don’t feel like it because it just takes sooo many spoons to go. I have to shower, get dressed then take a bus to my sister’s work, walk three blocks to my sister’s work all for a fifty minute appointment? It takes more than that just to get my sister’s car!! And the drive can be anywhere from 45 mins to an hour and a half, both ways. Just doesn’t seem like a good idea given my pain cycle at the moment. I do miss seeing her and my teddy bear Johnny. He is a HUGE bear that I got when I was in the hospital when I was first diagnosed with CES, Cauda Equina Syndrome. That was 12 years ago. And then I got two little bearista bears that I got from Starbucks, Bucky and Amelia. I didn’t want Bucky to be alone so I got Amelia for him. They stay with my therapist, mostly to comfort her while I am gone. Hehehehe. Ok pain meds slightly kicking in now.

I was twittering with the Prez of the AAS (American Association of Suicidology) tonight about how the words suicidology and suicidality are not words Microsoft word recognizes. So he sent a twitter message to Bill Gates. I hope that he makes some noise because suicide is the 10th leading cause of death in the US. I will be part of these statistics soon. That is all that I am, a statistic. I am nothing more than that to the world. I cannot believe that I am going to kill myself soon. And I am happy about it. I know that my pain will end. Thing is, though I have a date and all, I don’t have a plan. And that is troubling me because how can I kill myself if I don’t have a plan. I have a few ways I can do it, nothing that I will blog about because I don’t want to trigger any one or give someone the idea of how to do it.

I could experiment with some things but I just don’t have the energy for it. Besides, if I experiment and succeed too early then people are not going to be ready for my death. I just realized that I have to write letters to people to explain why I am doing what I am doing. I don’t want there to be a “why”. I know that there will be but I want to lessen it. I also know that there will be some questions about why didn’t my treaters to enough for me, but that simply is not true. They have tried to help me but I am just too hopeless for them. There is no medicine that can help me. And talk therapy has helped me stay alive for this amount of time but I am tired of talking. I am also tired of being in pain all the time. And the talking only helps when I see my therapist or blog/write about it. And I know to some I must sound like a whine bag or something because all I talk about is my physical pain of my ankle that no one can help take away.

Unless I hit the lottery or they find a cure for nerve damage I am stuck in pain and debt. Both of which hurt me very deeply. I just can’t ever get ahead with my debt because of I am no longer working anymore. I can’t even order out for food anymore. I know that sounds like a whine but I like ordering Chinese once in a while. And now I can no longer do that. I like ordering pizza and subs. Can’t do that anymore. I am not a good cook so I just have what my mother makes which isn’t the healthiest of choices because she likes to fry everything. Even vegetables. She will make say asparagus and then she will fry them the next day. Don’t get me wrong, they are good, but they aren’t healthy.

I have been trying to stick with the Special K diet in which you eat two bowls of cereal for breakfast and lunch and then have a sensible dinner. That is a fail. My stomach has been messed up since my bowels have been backed up for a week that I can’t think about eating and when I do, it is not for a bowl of cereal. And that is another reason why I hate myself, because it hurts so much to go to the bathroom. For the past few months I have been having nerve pain in my anus and rectal areas. Sometimes sitting is so painful I just want to scream. And there is nothing really I can take that makes it better. Vicoden barely touches the pain, if at all. I can’t go through life like this. No more, I have had enough.

more about nerve pain

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

Watched the baseball game. It went to the 10th inning and my boys came through. They beat the Rays 2-1. It was the first extra innings game this season they won so I am hopeful for the season. The Sox improve to 6-4 and still are leading in the AL East.

Was happy to get an email about the blog I write for the American Association of Suicidology has made the news http://hosted.ap.org/dynamic/stories/U/US_SUICIDE_SURVIVORS?SITE=AP&SECTION=HOME&TEMPLATE=DEFAULT&CTIME=2013-04-13-12-09-11.
It was good to see something come off of the hard work of the AAS president, Michelle Linn Gust to get the blog underway and now we have a voice.

It is not even six o’clock yet and I am exhausted. All I did today was run to the pharmacy to get my prescriptions and go up and down the stairs a few times to help my mother with some groceries. I have been up since seven. Seems I cannot sleep later than that. And I even stayed up late too. I didn’t go to bed until around midnight, after watching Lincoln and reading for a bit afterwards. I kept on going on twitter and facebook to wait for my meds to kick in.

Last night my foot acted weird because of the CRPS, complex regional pain syndrome. It got really cold, like ice and really painful. I put on some socks that were heavy and still my foot was cold even under my blankets. My bones were hurting really bad and if I had a chain saw, I probably would have used it to amputate. That is how bad the pain got. Then after it warmed up, it really warmed up. It got really hot and felt like it was on fire. I had to take the sock off and leave my foot hanging off the bed away from the sheets and blankets because it just was burning me. Nerve pain acts this way. The doctors don’t really understand why this happens. I am seeing a specialist on Tuesday to talk about this. I really hope she can give me some answers. All I can take is pain medication to soothe it or use a gel to try and calm it down some but touching it hurts like hell, which makes it difficult to use the gel sometimes. I find that oral meds work well for this type of pain, but the problem is that most doctors don’t want to prescribe it. I have not run into problems but I know I will soon enough. I’ll get the opioid speech how it is not good to be on these meds long term. But I have been on these meds for almost a decade now and aside from constipation which I control with some senna, I have no other side effects. It might make me drowsy but it’s not like I am operating machinery or driving like I used to. Now I just take these meds when the pain flairs up, which will be again tonight. Every night I am in this horrible pain but it’s never the same. Some times it is bone crushing, other times it is a burning sensation like my foot is on fire. Other times it feels like a barbed wire is surrounding my foot ready to be garroted. I can’t say what will be in store for me tonight after going up an down the stairs four times in a row this evening. I am not looking forward to it and there is no sense in taking the meds early. The pain hit unexpectedly, when I least expect it to so I can’t judge a good time. That is the most frustrating this about this condition. I have a HIGH pain tolerance and it usually isn’t until a pain is an 8-9 that I will feel it. Right now it is simmering on a 4-5 on a scale of 1-10. I have heavy thermal socks on to prevent it from getting cold because it is still winter in New England. My house is cold because my mother doesn’t want to pay a large gas bill, which we shouldn’t have to turn the heat on in the middle of April anyways!! So I try and protect my foot from getting cold anyway I can. But sometimes even having socks on will not prevent my foot temperature from dropping. My left will be cold as ice and my right a balmy 98.6. I hate this condition and wish I never got it but I got to learn to live with it and that is the hardest part.

another day of pain

by Midnight Demon, posted in cauda equina syndrome

Usually after a night of pain, I am ok the next day. I usually don’t have pain until later in the evening right before bed. Today was different. I woke up to my foot still hurting so I made some breakfast and took some pain pills and went back to sleep. I have been sleepy all afternoon since waking up at two o’clock. My foot is still hurting, not as bad so took another pain pill. Now I am ready for a nap.

I hate it when I have days like today. It just sucks because I don’t do anything but stay in my pajamas. I wanted to go out today to get my coffee and maybe write in my journal but that didn’t happen. It’s just another day in the house where all I can do is keep my foot up to stop it from hurting. Having a pain syndrome sucks.

I am very tired from the meds and feel a little dizzy, probably because I have not been drinking enough fluids. I could go to sleep right now and I am going to try and resist.

I started reading a new book. It’s about Lincoln’s first 100 days in office. So far, I think the book is badly written as the author has repeated himself a couple of times with in a few pages of each other. I don’t know if I can get through a book like this. Makes me wonder what the hell the editor was thinking or if he or she even read the thing. The book is supposed to be about the first 100 days but yet the author keeps talking about the Emancipation Proclamation, which is not until Lincoln’s second year, which is MORE than 100 days after he is in office. I’m already confused as to what the author is trying to convey.

pain and misery

by Midnight Demon, posted in Chronic pain

Eureka? I am in pain and want to do self harm to try and relieve it as no other pain pill does anything to take away or relieve my pain. I am tired of being in pain all the time, so much so I am entertaining thoughts of ending my life or drinking heavily to see if that helps. Crown royal mixed with some narcotics might do the trick in relieving the madness. It might also kill me but that would be a blessing and not a curse. I think I put too much pressure on my toes tonight while watching the baseball game. It’s hard to describe how I did this. I just realized this when my foot exploded. But then there are days when my foot explodes and I do not put pressure on my toes so I am at a loss. There is no rhyme or reason for my pain. It is nerve pain as clear as day, least in my mind. Tendonitis pain would be all the time while walking and going down stairs and such. But instead I have this pain while lying down in bed, while I am trying to go to sleep. It is as if my foot is saying “hello remember me? I am going to hurt you NOW because I CAN and there is nothing you can do to stop the hurting”. If it was my right foot, then I would say that there is a pattern but there is no pattern. There isn’t even a consistency in pain. Some nights I am tortured by burning, other nights I am tortured by vise like grips on my toes. Or like last night, I was tormented by zaps under my toe nail as if someone was trying to rip it off.

So I take my medication and I will be up for the next forty five minutes or so until it kicks in and I can hopefully find some slumber. I hope that I find slumber before I find a razor or get out of bed to get my whiskey. Maybe being drunk is the answer. I know that fresh cuts might help me but I have a wedding to go to this weekend so I don’t want to make a spectacle of my wounds. I have enough scars on my wrist that goes without saying. I just hope that I can stave off the impulses long enough to let the meds kick in and pray that it lessens the pain enough for me to sleep. I hate being like this….