Daily Log #9 (Public Perception)

After having a very rough night, probably one of the worst since the first week after surgery, I got up to do some research on the Internet to see if I could discover why I was feeling so bad. At one point last night my back was shooting an electrical force down my legs and at one point both legs lifted--involuntarily--about three inches off the bed and shuck violently for about three or four seconds. It was horrible! Scared the crap out of me that's for sure! I'm supposed to have control over my body and that really sucked.

While laying on the couch trying to sleep--I always go there so my wife can stay in bed and get a good nights sleep--I made the connection of my recent problems with my increased dosage of requip. There are a few things going on that led to the dosage increase. First of all, I take 20mg of Oxycontin 3x/day, but because I want to sleep better I thought I would try taking two Oxycontin tablets before bed instead of one and then I'd only take one tablet during the day. Sounded logical to me. The Oxycontin causes me to have some very slight muscle twitching that doesn't happen too often so I didn't think anything of taking the two tablets at night. I've been taking them that way for about two weeks and for some reason I never associated my twitching with the Oxycontin. Well, this last Tuesday night the pain and twitching in my legs was pretty bad and I thought it was because of my Restless Leg Syndrome so I took two 2mg tablets of requip instead of my normal one tablet. A little while later I started feeling okay and tried to go back to sleep.


Wednesday I called my Primary Care Doctor and asked him if I could increase my dosage to 4mg because my leg twitching restless legs seemed to be getting worse. He said I could and then his office called in a new prescription to my pharmacy. That night I took 4mg just like I did the night before.
Thursday I was so tired all day that I almost couldn't function. I had a nap in the afternoon that left me disoriented when I woke up. I couldn't even take time to write what I'd planned in my blog for that night because I was falling asleep while typing. That night I woke up and had terrible fatigue all over.
Friday I felt like I was going out of my mind. I was extremely tired and agitated as you can read in my blog for yesterday.
This morning I ached all over and the twitching was getting intense. So much so that there was not a single second where I had less than three different places twitching at one time. I turned on my laptop and looked up on the Internet what I suspected about requip. It turns out that when you take too much requip you get agitated, disoriented, lots of twitching, and the need to sleep. (choirs singing in the background at this revelation. LOL) I also decided to look up the side effects of Oxycontin... DONE DONE DONE (suspenseful music this time. LOL) muscle twitching.
So what I thought was increased restless leg problems was really side effects of increasing my evening dosage of Oxycontin. The doctors never tell you this stuff when they say, "I've got some medication that can help you with that problem." The longer I take this crap the less I want it in my system, but what the doctors also don't tell you is the withdrawals from this stuff, which is usually a lot worse than the regular side effects.
Now that I've written about that ordeal I'll tell you how it ties in with what I want to point out tonight about chronic pain...
I'm stuck at home all day, everyone is gone, and I'm unable to do very much. I keep myself busy with writing and I almost never turn on the TV unless it's a really bad day and I just can't do anything at all. After years of working and being away from home all day long at work, after living an active life and going places when I wasn't working, I find myself stuck in my room. My back hurts too much to sit up on the couch so I make my bed, stack my five pillows behind my back, and stay on the bed while I do my computer stuff. Talk about cabin fever!!!
Yesterday was so crazy and disorienting that I felt like I had to get out of the house or I would die. I literally wanted to die. That's how bad I felt and I actually believed that I would keel over at any minute. It was probably my flight reflex kicking in big time and I needed to leave the house as soon as I could. So my wife and I went out to dinner.
Now to the real point... I can't stay inside all of the time and remain sane, but going anywhere causes so much pain that it takes a few days to recover sometimes from spending an hour sitting in a restaurant booth. My relationship with my wife is the most important relationship I have on this earth and my pain WILL NOT keep me from spending quality time with her. So we still have our "date night" sometimes. Another thing I WILL NOT let my pain do is keep me from supporting my children. So I have made a promise to myself that I will go to as many of their sporting events as I can. All of these things take a big toll on my body and they generate a lot of pain to do them.
There is this perception by people we know that when they see me doing these things they think I MUST be okay or not as bad as I say I am. I'm sure that people at my church think I'm an inactive member or I just don't want to go, but what they don't know it that on Saturday I sat at both of my boys' baseball games or that I took my wife on a "date night" and I'm in terrible pain because I did it. Friends think that because they see a picture of me smiling with my family on the beach that I must be better than I claim to be, but they don't know how many pain pills I took to get to and from the beach and how the car ride made me moan all the way.
I have a life and responsibility that I will not let my pain take away from me all of the time. So I pick and choose what I will do based on what I need to keep my family together. If anyone sees me out doing anything at all and makes the assumption that I should be somewhere else doing something they think is more fitting such as work or church or social functions then I say they are totally ignorant about who I am and what I'm going through. They don't sit with me when I can't sleep at night. They don't talk with me in the bathroom as I soak in hot water with the hope I'll get a little relief. They don't hold my enema bottle as I spend two hours trying to get stuff out of my body that should come out naturally even though I eat a lot of fibre. In fact, they know almost nothing about me because they are so absorbed with their own life and problems that it's easier to make asinine assumptions than to spend time with me and ask me themselves.

This world is based on false judgements. Everyone assumes that they know what other peoples' lives must be like based on what they do with their own or what TV and movies say it is. I've come to learn the hard way that judging another person's life is total fabrication. Even when we know a person intimately they don't tell us everything going on in their head and why they make the choices that they do. To assume that we know anything about the right way for another person to live their life is to assume that we are better than them in some way.

Try to realize this... When you judge someone on this way don't be surprised to learn that someone else is judging you for the things they think you should be doing with your life. Don't be surprised if they think you're a fake and a fraud too.