http://bobisdysautonomia.blogspot.com.au/2013/02/well-at-least-its-not.html
This blog tells it as it is. it is an enjoyable read for those of us that get the stigma of well at least you don’t have…
Tag: chronic illness
I just don’t know anymore
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.
Normal vs Abnormal
Normal vs. abnormal
I realized today that since having a nerve injury, I don’t know what is normal anymore. I don’t know what it is like to not live in pain every day. I don’t remember what it was like working a full time job while suffering from chronic pain. I also don’t know what it is like anymore to go to the bathroom and not find surprises. This is what my life has become since getting Cauda Equina Syndrome and being diagnosed with Complex Regional Pain Syndrome (CRPS).
I can also say that I don’t know what it is like being normal without having voices in my head that talk to me all the time. My therapist and I were talking about this during our last session. I have to hear a “voice” while I read. It narrates the words. It usually is male as I frequently buy books that are authored by males. But it is the same male voice that hear. Without this voice, I cannot read. The words just do not make sense. Apparently, my therapist has told me that this doesn’t happen with someone else. She doesn’t have a voice that narrates when she reads something. I find this curious and so does she. As she puts it, “someone” has to “read” to me. But I have always heard the voice. Maybe it is just my muse reading to me. I don’t know. But then, I have lived my entire life since the age of five with hearing voices and keeping it covert. I guess the only ones that know I hear voices are the people that read this blog and read my memoir. Few family members know. I think my mother thinks I was “cured” I first hospitalized at the age of 16.
I was thinking about this whole normal vs. abnormal thing because I don’t remember what it was like having a normal bowel movement. I have to take stuff to go where as before, I just went whenever. I might have been constipated but if I don’t take stuff for it now a days, I can be backed up for a week or longer. And then I am really uncomfortable. I also don’t remember what it was like to actually feel the stool leave my body. I don’t have that sensation anymore. It has slowly come back but if I have loose stool, I really don’t feel it. Just like I don’t feel when I leak urine. My boxers will be wet but I don’t feel it. It’s not until I actually urinate that I notice I leaked.
I also don’t remember what it was like showering and feeling invigorated by it. Lately, it just has been an energy draining experience. I might have energy to take a shower, but then by the time I am done, I find that all my energy is gone. I was talking about this with a friend of mine the other day when we met up for coffee. She said that she would say this to her daughters, and they wouldn’t understand how it could be so draining. I thought I was the only one to feel this way but apparently, those of us with chronic pain also feel like this. I haven’t showered since the day I met my friend (three days ago). I plan on taking one tonight, before bed, so that if it does drain me, at least I will be going to bed anyways.
Also, since having the nerve injury, I find that I cannot tolerate heat. I never could stand the heat before my surgery, but after it I found that if I wasn’t in cool surrounding, I get very irritable and cranky. I don’t know how my mother can stand the humidity of the house today as the temp is in the 90s. I barely made it home but thank god for an AC’d bus. Waiting for it in the heat was very unbearable but there was not much I could do about it. There was a kid, probably around 4, that was playing with his ball at the station where I was waiting for the bus. He was annoying me because the ball was going all around me. I know that if the temp was cooler, I probably wouldn’t have been so annoyed. But I wanted to get out of the house as I have not been outside since Thursday when I met with my friend. My ankle does not like me right now, but I don’t care. I have the rest of today and tomorrow to rest it. I have plans for Monday to have lunch with my Aunt. I hope she doesn’t cancel on me again. We have been rescheduling this meet up for months now. I know she wants to chat about my book and about me. I am kind of nervous about it because although she is family, we aren’t exactly close, least I don’t feel that way. Then again, even with my sisters I don’t feel “close”. Some days I feel more like an outsider than part of a family, and I live with them!
I have decided to look over the letter that I wrote to my therapist the other night. I am going to type it up and then “blog” it so she can read it and try to make sense out of it. I will send it to her, too. She like having an archive of my letters. She is a weirdo, that is for sure.
Daily living activities and pain
Daily living activities and pain
I made dinner tonight. Nothing extravagant. Just boiled some potatoes for potato salad and my mother made grilled cheese. The whole peeling the potatoes killed me even though I was sitting down while I peeled them. My foot just couldn’t take the pressure on the floor I guess. I must have stood maybe ten minutes to get the potatoes in a bowl and cool them off some so we could eat them. I made potato salad with vinegar as they were too hot for the traditional mayonnaise. I will make them tomorrow as we still have some potatoes left over.
I am in so much pain from doing a little cooking. I made myself breakfast this morning and it wasn’t as bad as it is right now. I can’t believe that just standing for a about 10-15 minutes caused my pain levels to explode. Granted I am not supposed to be doing any of this. I am supposed to be resting to get my swelling down but I just can’t stay in bed all day. I am really bummed out that doing something simple hurt me so bad. I was going to take a shower today but that is off the list.
I am supposed to go to the pharmacy tomorrow to drop off my prescription for my pain meds. I have no fucking idea how I am supposed to walk there when I am in this much pain. My sister has a graduation party to go to so it’s not like I can borrow her car or have her drive me. I am so doped up it’s probably good that I am not behind the wheel. I am going to have to force myself to walk the three blocks to the pharmacy tomorrow. I am not looking forward to it because I know I am going to be hurting. I might as well stay and wait to have it filled as I don’t want to pick up the script the next day. I will just be in the same position as I am in now. I still have to walk the three blocks either way.
My cousin called me today and pissed me off. He asked where have I been and said he left a message the other day. That is bullshit because I don’t have a call from him. I checked my phone log and the last time he called me was last week. I hate liars. Then he said maybe I didn’t get the message. That really ticked me off. I quickly got off the phone with him as I said I wasn’t in the mood to talk. But he would let me off the phone without knowing why I was so pissed off. UGH. I don’t know why I answered the phone to begin with!!
I finally got the number for the junk car company to remove my car in the driveway. Now I just have to make the call. LOL I was talking with my writing partner about this. My family has been hounding me to get rid of the car. I don’t know why. It’s not like it’s bothering anyone. But they just do it to annoy me. My sister even volunteered to call for me. But I got mad and said I would call, don’t be rushing me. I stormed out of the house and went back to my room. I have been in a lousy mood and it’s hard to call people when you are hurting. My family just doesn’t understand how much energy it take just for me to go down the stairs to pee. I hate being like this but this is what my life has become. I can’t do simple things anymore. I am just too depressed and overwhelmed. My family thinks it’s because I am lazy but I am not. I just am too overwhelmed with stuff. And I hate talking on the phone. I get worried that I might not get a good deal for the car and I will get screwed. One place already tried to get me at a lower price than what is advertised in the paper. I will call tomorrow. I have the paper by my bed and hopefully by noon, I will call one of the three numbers and see what I can get for the car.
I know my sister wants some money from me because she cleaned out the car. I didn’t ask her, she just did it on her own. It was nice of her to do it but I hate that she now wants money for it. No good deed goes unpunished, I guess.
I am really worried about one of my blogger friends. She is going through a rough time. I wish I could help her but she is across the country, on the west coast of the US. We chat usually late at night if I am up but my late at night is early evening for her. We have a three hour difference in time so it’s sometimes hard to arrange a chat. I just hope she gets through whatever she is going through without harming herself. She is talking about going back to the hospital as a defeat and I wish she didn’t think of it as that. She needs help and the hospital is there to help her. I think that is part of the stigma of having mental illness. People that are frequent visitors of the hospital take it as a personal setback of some kind when it shouldn’t be viewed as such. It’s reaching out and admitting you need help and that takes more courage than anything. I used to think like her but I realized that my life is complicated and I have severe mental illness. It requires me to be in the hospital time and time again. There might be some shame in that but it really needs to end if we are to end the stigma around mental illness.
I know a blogger/twitter person that instead of calling it mental illness, she calls it for mental health. To me, that is different. People who are mentally healthy don’t end up in the hospital a few times a year or take psych medication on a daily basis. They don’t struggle with their illness every day, be it bipolar, depression, or schizophrenia. It pisses me off when people try and pawn off one thing for something else. Yes, I would like to be mentally healthy but that is never going to happen and I am not being pessimistic. That is reality.
midnightdemons7 
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