I had a horrible weekend. As many of you know, I've been battling with insomnia nearly my whole life. My biggest problem has always been quieting my racing thoughts, especially when I'm stressed, or have something big to look forward to (good or bad). Noise has also always been an issue for me. I can't fall asleep to silence, because my mind will wander endlessly. White noise isn't distracting enough to quiet my thoughts. If something is too interesting, it'll grab my attention and compel me to keep listening. Even as a child, I needed something to distract me from my thoughts, just enough to lull me into sleep. In order for me to fall asleep, whatever I'm listening has to be familiar, without being catchy (like music, which I tend to sing in my mind). When I was young, I often listened to the same books on cassette, over and over again. Once I got a TV in my room, I developed the habit of falling asleep to the familiar sounds of my favorite movies (either VCR tape or DVD, set on sleep timer).
Once I've finally managed to fall asleep, the second problem I have is that I never seem to fall into a deep sleep. Even though I usually recall having several dreams each night (which are indicators of REM sleep), it's as if I'm always right on the verge of consciousness. From what I've read, the sleep cycle repeats after REM sleep. Since I know I have several dreams each night, that would suggest I am achieving deep sleep at some point. However, it hardly ever feels that way. The slightest noise will wake me up, and I often have to start the entire process of trying to fall asleep all over again. As an example of how light a sleeper I am, would be that (when I was still on my feet) I once woke up to the sound of water dripping onto my carpet. As soon as my alarm would ring in the morning, I'd shoot out of bed, wide awake. In fact, I used to get so annoyed, because my brother would often let his alarm ring and ring. Even through two closed doors, and a hallway apart, I'd end up charging into his room to wake him up, so I could attempt to fall back asleep.
Since my accident, my insomnia has only intensified. I'm forever trapped with my thoughts (often sad and/or unpleasant) and almost always stressed out over something. The first year and a half after my accident was the worst. I was definitely sleep deprived during that entire period. Between the stress, shock and trauma of all the sudden change and loss, and the constant interruptions and noise (aides coming to turn me every two hours, nurses coming in my room with medication, or to take blood, my roommate, the call bell and loud speaker) it was near impossible for me to sleep at all. Nights were terrifyingly lonely, and it is when I felt most vulnerable and trapped within my situation. I had few pleasant distractions, and much too much outside interference. Although the nursing facilities I lived at tried giving me oral sleep aides, I was lucky if I got a couple of hours of broken sleep each night. Being sleep deprived for so long, definitely contributed to my overall health and mood. I had been so tired, for so long, it really felt as though I was being tortured. By the time I finally got myself out of the nursing home, I felt as though I had been very close to having completely lost my sanity.
Since my accident, I probably slept the most soundly I ever have (within the past six years) during the first few months of living in my current apartment. I finally had peace and quiet. I only woke up out of discomfort (maybe a couple times each night) and could usually fall back asleep rather quickly, after my roommate would help me. My roommate (at the time) worked full time, and went to bed around ten o'clock or eleven. Thankfully, he was a pretty heavy sleeper and although it might've taken me a couple of rings (I had a call bell system hooked up between our two rooms-which are at separate ends of my apartment), he was able to fall back asleep immediately. In fact, he got so used to our routine, I'd almost swear he was sometimes sleepwalking. He'd come in my room, and without a word between us, he'd straighten out my legs (which move involuntarily, due to spasms), reposition my arms, fix my hair (which often gets on my face and is annoying) and give me a drink.
I think I slept so well those first few months, because of the lack of unwanted noise (I still have to listen to CDs or DVDs) and the fact that I was the happiest I had been, in a very long time. I had just achieved a huge feat, by freeing myself from the nursing facility and was feeling relatively healthy. Getting out of the nursing home felt like a high. It was the first big, positive achievement I had made, since my injury. I was also much more active during the day, in comparison to my life now. During that time I felt well enough to get up in my chair, for eight or more hours each day. I spent all day distracted, painting, reading and playing games on my computer. I also had more responsibility, making sure the groceries got bought, telling my aides what meals to prepare and sorting through my mail (my mom & sister have since taken over those tasks- which I don't mind).
Ever since getting a bedsore on my upper thigh, back in 2008 my health and stamina have been declining. I ended up needing to be bed bound for a few months, while the wound vacuum was attached to me. I tried to slowly rebuild my stamina, by getting up for only a few hours each day. However, I've never quite been the same as before the sore. Sometime during 2009 I started getting this mysterious chest pain (which I have still yet to find a definitive cause for, or solution to), which seemingly subsided a bit once I returned to bed. I also developed hemorrhoids around that same period, which I've often thought could account for why the chest pains seemingly bothered me more intensely and more frequently while being seated. While I'm sure my hemorrhoids play their part in my snowballing failing health, and definitely have made bowel program more unpleasant for me, they don't always correlate to the chest pain. There have been countless occasions where the chest pressure begins while I'm lying in bed, and persists for hours.
My bowel program has really started taking a lot out of me these past couple of years. During BP I definitely experience autonomic dysreflexia, and afterwards often feel lethargic, and achy for hours. For at least the last year and a half, to two years, I've been staying in bed all day after BP. Now the chest pains seem completely random, and although some of my AD symptoms lessen when I'm lying flat, the chest pressure flares up regardless of whether I've been sitting up all day or not. Getting up (other than for BP & shower) every other day has had a double edged sword effect on my overall health and stamina. My body just isn't used to getting up every day. When I do, I seem to tire much more quickly than I used to.
Ironically, even though I often feel lousy and more fatigued than I used to I actually have MORE trouble sleeping now, than in the recent past. One of the leading (and most annoying) reasons is that it has become increasingly more difficult to be comfortable, even despite the fact I'm laying down. I'm often uncomfortable, due to low grade fevers, the mystery chest pain, and on and off chills, or cold sweats. I deal with two out of those four symptoms every night. Even though I might be super tired, if I'm not comfortable I can't sleep. I end up asking my aides, mom, and sister to check my catheter, reposition me, fix my hair, give me a drink, take my temperature and scratch itches (on my face) at least a dozen times each night before I finally doze off. Some nights I listen to the entire length of my CD (I enjoy listening to the Harry Potter series) and have to ask my sister to restart it, before I fall asleep for the first time. Staying in bed has decreased my stamina for sitting, but when I do sit I'm often uncomfortable and want to lay down. It's become a lose-lose situation.
Over the past two years, I started taking sleep aides (again) in a desperate attempt to help take the edge off and help me fall asleep, despite any physical discomfort I might feel. I've tried Meletonin, Ambien, Tylenol-PM, anti-histamines, Remeron, and Xanax. I'm still taking the Remeron (which is an anti-depressant my doctor prescribed for it's drowsy side effect- one of the pills I first tried in the nursing home) at its highest dose (45mg) at bedtime. My doctor also added Xanax at bedtime, in hopes of helping to calm my mind (it's an anti-anxiety drug). Honestly, nothing has seemed to actually "knock me out" in the way I wish they would have.
Lately (within the last six months or so) my stress levels have been through the roof. I'm really at my wits end with my entire lifestyle. I've been seriously considering refusing treatment, and putting an end to my suffering. I've done a ton of research, investigating my options and have taken measures to protect my rights, and ultimate wishes. It has not been an easy to think about my death, and the effects my demise will likely have on my loved ones. As difficult it has been to share my thoughts with my family and friends, I have felt it necessary to be open and honest. Needless to say, I've had many sleepless nights; thinking about what I will have to endure in order to die, how my decisions will effect the people I love and constantly weighing the pros and cons of my day to to day life, against my guilty feelings of not wanting to hurt the people I will ultimately leave behind. My mind is forever jammed pack, full of difficult choices and harsh realities.
Despite having peace and quiet, the comfort of having my family and pets with me, my failing health and exhaustion with my situation has got me more stressed out than ever. I feel as stressed out now, as when I was newly injured. I'm just so fed up with feeling sick so often, and finding little, to no relief (even though I've put myself through a dozen different medical tests, and sought out various forms of help- spiritual, mental & medical) from anything I've tried. The reality is there aren't many options available to me to make my situation any better, or more tolerable. I've BEEN trying my hardest for six years. I'm just tired, in every sense of the word.
I realize that getting inadequate sleep can (and most likely is) feed into my feelings of being physically ill. I know that it is a vicious cycle. I'm desperate, to find something that will work better than what I've been taking. I'm back to where it is taking me hours to fall asleep, and I wake up several times each night. Each time I wake up, it can take up to an hour before I fall back asleep. Nights before BP are ALWAYS more restless. Some mornings I actually dose off for a minute or two on the toilet, because of how tired I am. When I get done with BP I often have to fight myself not to take a nap, because I'm afraid it will be harder to sleep that night. I end up napping half the time. It's an awful cycle.
Knowing that I was about to reach the maximum dose of Xanax (which is 4mg- I was taking 3mg), I decided to ask my doctor if I could have something stronger. I had asked for Valium; instead he prescribed Ativan. I didn't question his decision. I figured, as long as it's stronger and might have a better chance of "knocking me out" for a few hours (at least), it was worth trying. My doctor only started me on 1mg of the Ativan. I was doubtful it'd do anything (since I seem to have a high tolerance to medication), but took it anyway to give it a chance. The first dose I took was on Friday night (7/8). Instead of passing out, I felt wired all night and barely slept. Even though I felt tired the next morning, and a bit nauseous I forced myself to get up in my chair. Saturday night I took the second dose. Again, I didn't sleep all night (but I attributed it to the fact that a new nurse was scheduled to come in the morning). As soon as the nurse and my aide laid me down in bed after BP, my whole room started spinning.
I could barely tolerate them having to turn me back and forth to dress me. Waves of nausea came over me. I couldn't stand to lie flat, for fear of throwing up. I asked to be put on my left side, in the fetal position. I managed to keep down a bit of toast and some juice, and stayed on my side for several hours (until the pain in my shoulder became too intense). My mom went to the pharmacy and bought me something for the nausea (Emetrol-it's a gross cherry flavored syrup). I took some, but it probably wasn't as effective as it could've been since I insisted on chasing it with a bit of juice. I ended up sitting up in bed for a few more hours before the nausea started to really calm. At times, it was so bad I was in tears. If there's one thing I hate more than BP, it's nausea.
In the end, I managed to keep down some chicken noodle soup, some toast with peanut butter, ginger ale and another dose of Emetrol, before feeling near normal. I figured it wasn't coincidence that I had just started the Ativan, and began feeling so ill. I wrote to my doctor, letting him know about my hellish weekend and informed him I was going to discontinue taking the Ativan. He agreed, and told me I could switch back to the Xanax, and that I could up the dose to the maximum 4mg. That's what I did last night and thankfully, I think my hunch was right. Not only did I sleep well last night, but no more nausea today. A small victory.
I'm wondering how long the Xanax will keep helping, as I've obviously already built up a tolerances to lower doses. The whole ordeal has got me nervous to try anything different for a while. I'm praying the Xanax keeps working for at least a couple more months. I'm tired of being sick and tired of being tired.
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