Tag: complex regional pain syndrome

What is fine for one day is not fine for another

by Midnight Demon, posted in blogging, chronic physical pain

Watched the Ohio State football game until halftime. They were leading 30-13 at the half when I decided to take a snooze. I thought I would only be out for twenty minutes. The twenty minutes turned into two hours! I missed the second half of the game. Final score was 40-20. Buckeyes have their first win of the season!

I had ordered some journals as a reward for my writing. I didn’t think I was going to open the package but I wanted to see if that is what I wanted. One of the journals is, the other is not so I am going to return it. It’s so hard buying journals online because you can’t see what they look like before you buy them. Though right now, even though there is a grocery store just a little ways from me, I want to order some ingredients for my cupcake recipe just so I don’t have to go to the store. It’s not like I hate going, its more that I don’t want to waste time on my feet and suffer the consequences afterwards that is preventing me from going. I wanted to go today but I am in a grouchy mood after I woke up from my nap. The kids next door are screamers and there still is a little dog that loves to fricken yap. I want to muzzle all of them! So they got me in a bad mood. I have been up since six this morning because I wanted to listen to my favorite DJ on the country countdown 40. She was filling in for the regular guy Bob Kingsley. I just hope they don’t take her away from Boston!! It was good to hear her voice.

As I was up so early and didn’t know what else to do beside listen to the radio play country hits, I wrote a few pages for my book. I am one page shy of completing my goal for the day. I don’t know what I wanted to write about. I thought what I did write was going to take up four pages, or more, but my condensed style of writing fixed that plan. I guess if I could bullshit, I could write more but it isn’t in me. I can’t bullshit my way out of a paper bag! I found that writing in college way horrendous when something had to be a certain length, like they almost always do. Sometimes I had to make stuff up and it was painful. I am a literal person so I write things literally. The only time I was creative was when I was taking a creative writing course. And eventually, my creativeness got blocked. Half way through the semester, I ran out of gas to my stories. I found that I was writing dark stuff and it was just draining. I couldn’t write a happy story if you paid me. I would have had to experience happiness and I never have.

I finally got Luke Bryan’s latest CD and I love it. There is a song, “Play it again”, that I have been listening to almost non-stop. It is such a cool song. That was one of the reasons I had to listen to the Country top 40. I wanted to see if any songs from this CD made it and sure enough, the first song, that’s my kind of night, was like 28 or something like that. And the CD has been out for only two weeks! I love Luke Bryan’s music.

Tomorrow I am supposed to go out with a friend to see a movie. I am hoping my foot isn’t too bad as I had to cancel plans last week. It sucks when you have chronic pain and can’t keep or make plans because of it. Even though my foot is under the covers, I am still having pain and spasms. I haven’t done anything to warrant it, except going up and down stairs a little bit too much today. But I never know what is too much or not. What is fine for one day is not fine for another. It is so frustrating! That is why I am afraid to go to the grocery store for fear that my plans for tomorrow will have to be canceled because I will have to rest. It sucks.

loss of self

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

Today I broached the subject of grief with my therapist. She hasn’t received her packet of letters that describes my grief and how I think I should address it. I couldn’t bring myself to tell her that I think the reason for my craziness the last few months has to do with my grief and not dealing with it. Course, I didn’t think much of it until I asked if grief can cause psychosis. Then I just shut down. And thank god, it was the end of session. She wanted to see me tomorrow but I told her Tuesday was fine. It will give me more time to think about how to approach this.

She encouraged me to write about this stuff and how I am thinking about it but I don’t know how. Just thinking about my losses just makes me extremely sad. It’s like knocking the wind out of me. I mean, I used to be able to work two friggen jobs and now I can’t even work one. I was stable enough to work in one job for fourteen years and then I messed it up because my foot got messed up. I don’t know if I could work again at the same job. I would like to. But I can’t be all running around like I used to. Thing is, being a lab assistant, you sometimes have to do phlebotomy (draw blood) and I was never keen on drawing blood. Even the easiest of veins I blew and I don’t want to go back to it ever again. I was lucky my department didn’t have to do that. There was a separate department for blood draws.

It still hurts that after fourteen years of service I was just not accommodated by my job to do my job. It really hurts. I never told anyone how bad it is losing my job. Even though it has been almost a year and a half now. It also sucks I can’t do my other job of driving around Boston picking up samples because my driving record got messed up. I got a speeding ticket one morning because I was too sleepy to notice I was over the speed limit. But a State trooper noticed and I got fined. Then because I couldn’t pay the fine, my license got suspended. It took me almost a year to get it all cleared up. But it is going to take a while for me to have a “good” driving record again. And that kills me. I know it doesn’t matter now because by the time I have a car of my own again, I will be “good” again. But the fact that I can’t get a Zipcar to have some independence just kills me. I can borrow my sister’s car to go places but mostly her husband takes it and I hate driving the truck. I know I should conquer my fears and learn to get used to it but I have a peripheral defect and I am just afraid I am going to sideswipe someone or something. And I HATE backing up in the drive way because my sense is not great. Even with the car I hate it, especially when there is a car parked across my driveway.

I really have other deep losses such as the loss of myself and the loss of my abilities. Walking used to be my joy. I was able to walk long distances and think nothing of it. It never bothered me. Sometimes it did when I used to get Charlie horses if I walked too far and didn’t drink enough. But other than that, I really enjoyed walking to the train station which is about a mile away. I used to do the Walk for Hunger, which is a 20 mile walk around Boston. Haven’t done that in years but I am determined to do it one year, long as I go slow. I will have to do mega training to work up to it as right now my limit is four blocks .

Then I have the loss of my bodily functions. I never thought that at the age of 36/37 I would have to wear diapers to events that last longer than a few hours. This is because I no longer get the signals to my brain that my bladder is full. Once I am full, I start leaking excess until I do go. It isn’t until I feel wet do I ask myself the last time I went potty. The number 2’s are a different story. I can’t feel myself went I go unless my stools are hard. If you are the squeamish type, I would stop reading right now. This could be disgusting to you. If my stools are soft I don’t feel them as they move out. If I have the runs, I can quickly have an accident as I can’t hold them long, though I have been lucky the last few times in holding them in by not letting loose my farts. If I lose control of my farts, I lose control of my stool and well, you got it. A nice number 2 in the pants. It has only happened to me a few times, the worse was when I took too much fiber pills and thought I was farting but really I was shitting myself. That was a lesson learned. I usually take senna because I find that it is the only thing that makes me go without too much trouble. Too much however can cause very bad cramps and possible accidents. Every time I have an accident or have skid marks because I didn’t wipe myself well enough, I lose it. I really go into a darker place and usually want to kill myself. Same with when I have a urine accident but I am getting used to them. Having stool in my pants is a real downer. And I don’t think anyone can get used to that. It makes you feel so small. And people take it for granted that their bodies will tell them these things. My body, because of the nerve damage, no longer does. And it is a HUGE loss. Again, not something I have dealt with nor wanted to.

Then, of course, there is the loss of where I should be now had my mental illness not shut me down and forced me to stop school once again. I call this the “if onlys”, such as if only I didn’t have a psychotic breakdown in 2008, how different my life would have been. If only I went to a four year school instead of getting just my Associate’s degree I would be better off now than I was back then. If only I had decided to work part time and go to school full time would I have been better mentally than I am now. Or would the financial strain of not working been too much? Or would the strain of going to college full time really be my downfall? Either way, I can’t change any of it, but it is a HUGE loss to me not being able to go back because I fucked up. I should have just made a simple phone call to put my loans into deferment and I would have been able to go back now that I am just sitting on my ass doing nothing most days. I think me not going to back to college is the most hurtful to me because I loved my studies, didn’t matter what they were. I just loved being in academia. Psychology is really my thing. And I know I could have been a good therapist. But I don’t think those dreams are ever going to come true. Maybe if I win the lottery.

Then you take into account all the times I have been suicidal. It is a loss because I am still having to piece back my life and I don’t like it. I rather be pushing up daisies for eternity. But as past blogs have talked about, I can’t kill myself anymore than I can make a gourmet dinner. AND it hurts to go on living like this.

I am a survivor of suicide attempts

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

I wrote a quick blog yesterday about the stigma of suicide. I asked wouldn’t it be nice to say to people you survived suicide like you survived cancer? I listened to the WEEI radio to hear my Sox game and it amazes me how quick people are to say they survived cancer but hide in the dark when talking about taking their own life. Both people are fighting for their lives. Granted one is bodily and the other is mostly mental but it still begs to question why there is a different in the illness. Suicide is the result usually of untreated depression or other mental illness. Most people think that it is depression that causes people to think about suicide but it is not. You can be psychotic and think about killing yourself. I know. I have been through it with my psychosis. I have had voices tell me to kill myself, in fact in one of the delusion it was considered a command order. Psychotic disorders often get tossed by the way side when considering suicide but a recent article in JAMA showed that it can pave the way to catching suicide attempts if asked about. The study showed that teens with psychotic symptoms are more apt to attempt suicide than non-psychotic teens.

But you don’t need to be in a mental state to be in the suicidal mind. That is what is so devastating about suicide is that people before they commit suicide look and act “normal”. I know that people who are suffering from cancer can look anything but normal. They can be bald or look skeletons. They are really fighting to be alive while those that are thinking about suicide just want to die. People with cancer are the lucky ones. Their suffering will end. People know this. But those of us with mental illness we continue to suffer and when we decide to give up and end the fight, we are looked down upon and treated often inhumanely. We then feel ashamed of ourselves for trying to end the pain and failing at it. We end up in the hospital to “save ourselves from more destruction”. All we want is peace, same as the cancer patient that is terminally ill. We want the suffering to end.

To some people, they believe that suicide is preventable. To some people it is but you are not going to catch the majority of people most at risk. You cannot stop every suicide. People have the right to kill themselves if they so choose to do so. It is the ones that survive that have the right to speak about it. Because those that survive depending on their reaction to their own attempt might be clues to whether they survive or not. I have survived the past several years despite making elaborate plans on killing myself. I really want to die but my reasons for living keep me going. I don’t like it but I can’t picture my sister telling my eight year old niece that I have passed on. She is my baby and I don’t want to hurt her or my other nieces or my nephew. My nephew is what kept me going during a very difficult time in my life. I wish that I had succeeded but because I didn’t, I got to see him grow into a man and graduate from high school. I didn’t think that he would or that I would live to see the day he did.

It saddens me that I am still alive when all I want to be is dead. I don’t know why I preserve. Right now I am in a lot of pain and I don’t like it. I don’t know if I am going to get any sleep tonight because of it. Where is the training of medical doctors to handle chronic pain? There isn’t any. I don’t get asked what my mental status is during medical visits anymore. It is just assumed that I am ok because I have a smile on my face. Didn’t matter that the day before I was in so much pain that I was in bed all day, taking pain pills every four-six hours. Maybe I was happy because I could finally get out of the house and go to my doctor’s appointment and I wasn’t in pain. The siege was over with. But now it has returned and the meds have not kicked in yet to knock my big ass out. I am tired of living with chronic physical pain all the time. It sucks the life out of you, what ever life is. And if it doesn’t, your mental illness will surely do it for you. There is no reprieve. No relief in sight. And that is why suicide is what it is. For people that survive it, they should be able to say that they have. But no one does. There are a few people that have been coming out slowly through the AAS blog but I fear that the ones that don’t come out, are the ones that will try again and maybe succeed.

I am a failure of suicide attempts. And because it has been so long since my last one I am not going to try again any time soon. Least for now. So I am in pain and I have one option left to me…to suffer.

weird dream

by Midnight Demon, posted in blogging, chronic physical pain

Today has been a quiet day for me. My only goal for the day was to go to the post office and mail a letter. It didn’t happen. I woke up in pain and been nursing my foot ever since. I woke up after having a disturbing dream. In the dream, I was being laughed at because of my pain. These two nurses or something similar I am not sure, were laughing because they couldn’t believe that my pain was so bad that it needed pain medication. So they laughed at me. Then when I was telling them I had nerve pain in the foot, they laughed harder. I was feeling sorry for myself in this dream and wondered if I am laughable. This pain has been going on for so long, I wonder if there is anything other than pain medication to help me anymore.

I fell back asleep only to find myself in another retarded dream. I got up but my foot was still hurting me. I then was extremely nauseous. I had to lie down and take my anti-nausea pill. I just couldn’t understand why I was so sick. I know it probably had to do with not eating anything all day and just taking my pain medication on an empty stomach. I just didn’t feel hungry today.

The earlier dream really got to me though. I know it was just a dream, that it wasn’t real. But it felt real. I don’t know why this dream struck a cord with me so much. It really got me thinking that this is how I perceive myself, as a laughing matter. Or maybe it is just that I don’t think people are believing me anymore when I tell them I have pain. I know my pain is real. It is incapacitating and debilitating. I can’t do anything, walk, go up stairs, stand, nothing that I used to do before. Funny (not ha ha) that I relearned to walk twice in my life and now I can’t enjoy it.

I know my therapist is going to ask me what do you think this means. I don’t know what it means really. It is just a dream in which I felt like I was a joke. That no one really believes I am in pain anymore and that I am ashamed of myself for some reason.

It’s a little after 0530 in the morning. I woke up around 0500. I was in a lot of pain. I didn’t dream I was in pain, I just woke up being in pain. My leg and my ankle were killing me. So I took some thing for it. I hate when I wake up in the wee hours of the morning. It usually means I am going to have a rough day. I am trying to stay awake for as long as possible so that I can maximize my sleep. Only trouble is that I have an appointment with my therapist at noon time so I can’t be totally asleep. I have my alarm set for 1015 to wake up. Now I am thinking that is too early as it will only give me about a 4 hour snooze, if I go to be within the next half hour. I haven’t had any weird dreams last night, least none that I can recall.

My one goal for the day is to mail my therapist’s packet of letters that I wrote her while she was on vacation. And if I am feeling up to it, to clean my car. I still have not done so all summer. I keep putting it off every day. I just don’t have the motivation to do it. I really need to take down the transponder for FastLane. I hope I can do it without breaking the windshield of my car. Once I get it cleaned out, I can call the junk service people and get it out of my hair. And hopefully, have some money in my pocket for a while.

I really hope that my therapist doesn’t read too much into my dream as I have. I still can’t get it out of my head. I have been trying to forget about it but it still there, and the feelings that are associated with it are too. I don’t know why my sisters were in the dream. They didn’t do anything to help with this stupid lady laughing at me. But it was just a dream. Just a dream.