It’s almost 2 am and I still have not gone to bed nor do I think I will in the next hour. Pain is keeping me up and apparently I am not alone. My CES friends on Facebook and I have been chatting most of the night, not really complaining because we all know why we are up: PAIN. I find it sad that people with this condition lose sleep most of the night and most of the time because of PAIN. It sucks yet no one seems to care. We tell our doctors about our pain but they don’t really do anything about it. They might prescribe us sleep aids that don’t work or give us terrible side effects, such as sleep walking around the house, bumping into things as they go. Then they awake in the morning and have no idea why they have so many bruises on them. I have a friend in England who if she takes too much of sleep aids she hallucinates and has full fledged conversations and actions without her realizing it to other people and such. It scares her every time. And I don’t blame her. It sounds more terrifying than my voices.
This is what CES and CRPS does to you. My left foot was cold as ice and swelled to the point of pain. So I put a sock on it but now the sock is bothering me, to the point of it feeling like it is strangling my ankle but my foot is still cold and I know the pain will get worse if I take it off. So I live with the strangling sensation. I got to take another dose of my medicine to calm down the pain because it’s been more than four hours since I last took it and I am still in pain. I should have been asleep at least three hours ago. But again, when the pain is stronger than the pain meds, you don’t get relief. The pain meds are not going to do anything for my foot feeling ice cold but at least it will hopefully space me out enough for me to go see Morpheus. I forgot what he looks like I haven’t seen him in so long. I think it’s funny that the god of dreams is called Morpheus and then you have morphine that is a high pain reliever drug. Maybe they are related. I don’t know. I have only been on morphine once after surgery and then had to be taken off because of bad side effects (it caused big time urine retention). And that was over a decade ago so I don’t remember how it made me feel. I know it took care of the pain like it was supposed to.
But I digress…I have my sleep machine on and I think I will get off of the laptop and try and go to sleep before it becomes six in the morning…
Not been feeling good today. Back has been bothering me and so has my stomach. Seems like no matter what I eat lately, I get indigestion. I just took some Mylanta, the Walgreens equivalent as the real Mylanta hasn’t been on the market for quite sometime.
I got my haircut at my cousin’s house tonight. I had to get my haircut because it was getting too long. It’s been at least two months since my last cut. I like to keep my hair short and buzzed close at the sides and back. I wanted to take a shower afterwards but I just couldn’t bring myself to. I just washed my hair and that was it.
I was supposed to go out tonight but the Bruins are playing and I didn’t feel like going to a bar. I just don’t like loud places anyways.
Person from my long term disability company called me yesterday to check in. I don’t know what to say to her. I still have pain but it has been minimal because I no longer leave the house anymore. I might go out three days tops, and that is only if I really feel like going out for a coffee. Today I went out and now my ankle is thanking me with pain. I just can’t win. And what if she asks me about my mental health. I will just say yea I think about killing myself nearly everyday and wish every night before going to sleep that I don’t wake up. I just can’t face another day of nothingness. I haven’t been taking care of myself, more now so than before I got the disability. I shower maybe twice a week if that. I don’t do housework, though my mother now needs help with it. I’m not sure how I can help her as I can’t really be on my feet for too long.
It sucks having Complex Regional Pain Syndrome (CRPS). I’m lucky it likes the cold as the temperature has dropped to the twenties. I cannot tolerate the heat anymore. I like to be warm but not too warm. Sometimes I can’t even have the sheet on my feet/leg it bothers me so bad. But at least the swelling has gone down some though I still have a lump in my leg where it shouldn’t be. I so want to excise it. But I have been told that I might cause more damage if I excise than leaving it alone. I’m just glad that the voices haven’t been around telling me to excise it. I would have to go back to the hospital. I am taking my antipsychotic med. I have to take it every other day or else I become delusional and psychotic. It has been helping with the paranoia that I had when I was on a crowded bus or train. Now I can be around people without freaking out that they are going to kill me. How fun it is having Schizoaffective disorder or as my therapist calls it just bipolar disorder with psychosis. Apparently I don’t have the “positive” features of the Schizoaffective part.
I haven’t been hospitalized for almost six months. That’s good but I have been feeling like I should be in. I just can’t take living my life anymore but then I know I won’t really get the help I need. Most hospitals don’t have time for individual work and so lump you in with a group of treaters to talk for 15 minutes of the day. Then it’s back to the ward doing nothing but arts and crafts all fucking day, least until dinner time. The groups they have are useless. On a good day you might get psychotherapy group. I like that group, I can get something out of it. I should make an effort to go to an outpatient group therapy but of course I have no motivation or inclination to do so. I think it might break up the monotony of the day but that would mean leaving the house at least once a week. I was thinking of going to a LGBT group to be more comfortable. And maybe help with the transitioning of things but I don’t think you can do that in a group. I don’t know, maybe next week I will call. Or have my therapist call to find out more information about it. It will be local so I wouldn’t have to travel too far. I just am afraid I might not be able to walk to the center because it is too far from the T stop. There isn’t a bus that goes by and the closest train stop is more than a few blocks away. Difficult for someone with mobility issues. Course I could take a cab but that is just wasting money to me but maybe it is something to think about. But that is if I get “accepted” into the group to begin with.
Ronald Reagan: I know in my heart that man is good. That what is right will always eventually triumph. And there’s purpose and worth to each and every life.
I try to live by this quote because there are days that I don’t think I have a purpose of am worthy of living. I also I try to live my Abraham Lincoln’s quote: Whatever you are, be a good one. Since struggling with coming out as a transgender, I have found this to be close to the heart. I try to be good but yet I feel so bad. These quotes help me to see that I am just perceiving myself wrong.
I’m up in pain and listening to Casey James. I love his music and guitar playing. I think the guitar is the best instrument to listen to when you are in a bad mood. It just does something to the brain. Or maybe I just like it because I like it.
So I am in pain tonight because I did too much today. Can’t do stuff that a normal person can do like go up and downstairs, put a bookcase together and then carry it up the stairs even though it wasn’t that heavy. I plan on getting a bigger one, maybe a six shelved case. That ought to be able to get my stuff off the floor. Right now my new book case is half full and I haven’t even really started putting stuff in it yet. My “bible” of suicidology books doesn’t fit in it so I am going to have to put it in the bookcase in the hallway.
I wish I could do things that I used to be able to do without pain. My left foot feels like it is being stabbed repeatedly. In addition to being stabbed, it also feels like it is going to snap if I move it the wrong way. Oh the joys of nerve pain. Always changing. It never is the same night after night. Makes it interesting and then when you go to the doc you have to explain to them that the pain has changed. No you no longer have a barbed wire across your ankle, you just have a constant drilling feeling. Sometimes I think the doctors think you make this stuff up just to get drugs but without the drugs, I would be a suicidal nightmare. It is bad enough that I want to cut. But that I because of another issue.
My back is aching like I did manual labor for hours. I can still move but I know I will probably be a little stiff tomorrow. I will do some of my exercises to loosen up the tight muscles before getting out of bed tomorrow. That is all that I can do to prevent a relapse. If it hurts too much I can always drug myself to obviation.
I thought that would happen by now but I still have some words left in me that I have to get out before succumbing to pharmacology. I am hoping tomorrow I get my hair cut. It is getting pretty long and I don’t like it long. I especially don’t like it when I have wisps of hair sticking out of my ball cap and glasses. It is driving me crazy but my cousin has assured me that tomorrow afternoon he will cut it, though he didn’t call tonight to confirm.
Did I tell you that my foot hurts? My ankle is having weird pains and my leg just is on fire? I can’t win tonight. Why am I in pain other than the fact that I did too much today? Why does doing too much bother me? No it’s not because I am fat and lazy. Its because I have been left with a nerve condition known as Cauda Equina Syndrome, CES for short. It’s when the horse’s tail part of your nerves get disrupted because of a trauma or disc material gets embedded in it. In my case I had this syndrome twice due to a disc rupturing. I have had four back surgeries, 2 at different levels. If I had them closer together I might have needed a fusion and then I would be permanently out of work forever. Right now I am out of work on disability. Mostly because of mental reasons. I also suffer from mental illness as I constantly want to kill myself every day for this reason or that but I am forbidden to do it. I just can’t muster enough courage to end my life. I constantly wish I was dead just so I wouldn’t have to deal with my physical or mental pain. Right now I am just dealing with the physical. But throw in some mental pain and I am ready to be committed and that is no fun.
I wish I had normal control of the lower part of my body again. But I don’t think it is ever going to happen. If anything this pain reminds me that 12 years ago I messed up my back due to a chiropractor. She adjusted my spine and my disc responded by exploding. It left me with something called foot drop and I have been in trouble with my left foot/ankle/leg since then. I get tired easily. I can’t walk long distances like I used to. My foot will just become weak the more I try to use it. It sucks. And I am only 37 years old. I don’t know how I got to be this old but I know I won’t make it to be 38…
Writing on suicide is dangerous because suicide is deemed unthinkable. To think about it, then, and here syntax betrays what I’m going to claim, is understood as thinking about how to do it or when to do it. To think about it is to contemplate it. Thus, one says that one is not thinking about it, but even raising the prospect elicits concern and paranoia: why would one think about it if one were not thinking about it? I want to stay with this formulation, because I think its unthinkability is a problem, albeit a problem tied to the unthinkability of death, and the political and aesthetic imperative to think through life and to cultivate thriving life.
Because suicide always elicits confession, let me tell someone else’s story.
My cousin killed himself when I was a freshman. I was in Kenya during my first (and only) summer vacation, and, as…