Sleepless Nights

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.







- Posted using BlogPress from my iPad

One step forward. Two steps back.

Two weekends ago was awful. I thought I had caught the flu. My everyday life is enough of a struggle as is, and being super ill on top of things is just unbearable. I started out on that Wednesday, with just an annoying tickle in the back of my throat. Unfortunately, it quickly turned into an achy chest cold by the next morning. I tend to panic whenever I develop a cold, because I'm afraid I won't have enough lung power to cough properly. The more I cough, the more tired I become. If I’m really having difficulty I need someone to roll me onto my side and pound on my back. The tiniest bit of mucous can take me 20 minutes of coughing, before I can bring it up & out of my lungs. It makes me very susceptible to bronchitis & pneumonia. Despite all my efforts, I still ended up with a small amount of fluid in my lungs, by Saturday. So my nurse called the doctor and he prescribed an antibiotic over the phone.

I'm normally very hesitant to take antibiotics, as they can wreak havoc with my bowels. Going to the bathroom is one of the few things that still stress me out just as much as it did when I first got hurt. It's a subject I don't normally like to discuss, but I find necessary in this case, since most people have no clue just how awful the process is. As crazy as this sounds, I'd gladly give up food if there was a way to get my nutrients and never have to go to the bathroom again. Unfortunately, I'm out of luck. Instead, I have to live with tubes coming out of places they were never meant to; along with having strangers (nurses) manually force my body to go, every other day. The catheter required surgery to “install,” for lack of a better word and the sight of it disturbs me. It is also responsible for one of the many scars I’ve accumulated since my accident. Not to mention, having a catheter makes me prone to having urinary tract infections, that at times could become lethal. All that just so I can live a somewhat normal life, without having to worry about having accidents (like a small child). I doubt it's something I'll ever be comfortable with and I'm always on edge worrying about it. Given the everyday trauma factor of needing a bowel regime, I certainly don't want to mess with system and make it even worst. The down side to holding off on antibiotics is that I end up having secondary symptoms that last long periods of time. Slight discomfort is still better than the risk of having an accident. Pick your poison.

I hate having to choose between two undesirable options. Incontinence is embarrassing and upsets me every time it happens. No matter how many times my nurses or family try to brush it off like it’s no big deal, whether it bothers them or not, matters little to me. I could care less that “it’s a natural body function that everyone does” or that “everyone knows I can’t control it.” That’s the problem! I can’t control it. It’s very easy for other people to expect me not to get upset, because they don’t know what it’s like. The average person doesn’t have to worry about soiling themselves every time they go out or have company over. Although it doesn’t happen often, it makes me anxious and creates extra stress, which in turn, makes me not want to go out at times. I think it’s especially bothersome to me (in comparison to other people I know), because I had a lot of “issues” before my accident as well. I’ve been uptight about going to the bathroom my whole life. I’m sure it’s difficult for men to understand, but we women have so many more obstacles to deal with than they do. I could barely bring myself to pee in a public restroom, let alone anything else. Even then, I’d have to strategically put down toilet paper on the seat and then do a balancing act to flush with my feet. On long trips I carried a “survival kit” of travel toilet paper, mini cans of Lysol, hand sanitizer and baby wipes. Some would say I was a bit neurotic. However, given my past behaviors, it’s easy to see why I have such hard time dealing with my current situation. It’s unbearable needing help with such private things.

Since I already had fluid in my lungs, I felt I had no choice but to take an antibiotic, even though I knew I’d be risking bowel issues. The only way to get the fluid out, besides coughing it up, would be to have it suctioned out. I had to get suctioned many, many times when I was newly injured and it was always a horrible, painful process. My memories of the hospital are all very disturbing and the thought of having to go to the hospital terrifies me. The horror of ending up back in the hospital greatly outweighed the fear of incontinence. The hospital is potentially just as dangerous as it is helpful. I’m always afraid I could catch something worst than I came in with. The hospital is also extra scary when you’re paralyzed. In my experience, the staff is never really prepared to deal with someone that is fully paralyzed. I need a special call button that I can tap with my head; without it, I have no way to call for help. I’ve actually been told “to scream” if I need help. Then, there’s the fact that if I’m hungry, thirsty, bored or uncomfortable I have no way to help myself. Being in the hospital is always uncomfortable and extremely lonely. The nurses and doctors always have other patients, so it’s not like they have a lot of time to check on me or help me with little things, like taking a sip of something or changing the TV channel. The worst part is the flood of horrible memories that come back when I enter a hospital; sleepless, lonely nights, fever induced hallucinations, the fear of dying and the powerlessness of being hooked up to machines. The thought of having to relive a moment of those memories and the fear of getting worst made it an easy decision to take an antibiotic.

Thanks to my bad luck, the antibiotic that the doctor prescribed made me feel worst than I did with only the cold. The first day I assumed all the terrible side effects were flu symptoms. I didn’t figure out it was the medicine until the second day. The doctor gave me Clarithromicin for the congestion as well as Musinex. Both pills are meant to last 12 hours. Shortly after taking them I felt like I had swallowed a basket ball. The pressure in my stomach was awful! I could have handled the pain, if it weren’t for the nausea that came with it. I haven’t thrown up since my accident. Thank God. I was in so much pain and the nausea was so horrible that I was willing to try. It’s scary to think about having to vomit because if I’m laying down flat there’s the potential of aspirating. The thought of dying that way isn’t very pleasant. Although no one enjoys throwing up, it’s so much more stressful for me now than when I could just get up and run to the toilet. Even after I had everything ready and I was ready to try, I had no success whatsoever. I’m sure anyone would agree that nausea is enough to make anyone miserable. I tried dealing with it the best I could. I had my sister put me on my side in a fetal position the best she could, (something about curling up into a ball has always helped me with nausea) in hopes of making it more tolerable. Unfortunately, lying on my side is extremely painful to my shoulders after a short amount of time, due to the fact that my muscles or so weak. I was physically and emotionally drained by the first night. I hadn’t been sleeping well because I had to sleep partially sitting up for a couple nights before the medicine and being nauseous on top of sleep deprived was enough to put me over the edge.

I normally do a good job of appearing like I’m ok, but the combination of lack of sleep & the nausea was too much. I lost it. It’s been a very long time since I’ve felt that depressed and/or desperate. It’s difficult enough to deal with the day in and day out issues that come along with paralysis and feeling sick and in pain made everything seem a million times worst. All I could do was cry and pray. You’d think after a certain point it would all seem easier or that you’d adjust over time, but I felt as if I’d been warped back to those first few months after my accident. All the fear, pain and anxiety came rushing back and overwhelmed me. So many questions come to mind and it’s so frustrating to never have answers. It’s times like these, when I’m most vulnerable and all the doubts and regrets I have feel like they’re enough to crush me. The same questions repeat themselves over and over again and four years post accident I’m no closer to figuring them out; “Why did this happen to me?”, “Why did I dive when it’s so out of character for me?”, “Am I being punished?”, “Why do I have to pay such a high price for one mistake, while people do stupid things every day and walk away just fine?”, “Why are there rapists, murderers and pedophiles out there enjoying a healthy life, while I’m confined to a chair?” The list goes on and on. I’m guessing most people in my situation go through a similar emotional rollercoaster ride and I often wonder how they cope with everything.

I often wish I had a stronger faith in God. I feel like I’d be more at peace with things. I’ve never been a strong believer in any specific religion, despite being brought up Roman Catholic. My accident awoke the desire to believe in something. I can remember being under the water, positive I was about to die and feeling so scared about what would happen next. Up until that point, my belief in an afterlife or greater being was non-existent. I believed as a kid, but became cynical over time. My mom’s two divorces and my sister’s death, among other things, created a lot of doubt and slowly ate away what I’d been taught to believe.

Shortly after my first brush with death I had another experience that shook me to the core. What I thought had been a nightmare, I now know were hallucinations, brought on by high fevers. In ICU and in rehab I had fevers over 104, so the near drowning was only one of several times I almost died. The things I experienced during the hallucinations were terrifying. They weren’t scary in the classic sense, like vampires or zombies; they were scary because they felt as if they’d never end. I sensed I was close to death and at times I was convinced I was already dead. I’d hear the voices around me and I’m guessing I was drifting in and out of consciousness, because I’d see the nurses, doctors and aides and things around me. I was aware of being brought to different tests; MRIs, X-rays and surgery, but I had no sense of time. It felt endless. I felt as though I must be in hell, because of the pain and fear and what seemed like a never ending repetition of the same things, over and over. The overwhelming sense of eternity was horrific. I tried calling out to every God or deity I could think of. I panicked each time there was no response and I can remember thinking, “What if we had it all wrong? What if we humans didn’t know God’s name? What if my non-belief meant God would never hear me?” I tried everything I could think of. In the end, I just cried and begged that it was all a terrible dream and that I’d wake up and it would still be June 4th, 2005 and everything would be good again. Part of me is still hoping to wake up. The other part of me will never be the same after that experience.

It was an awakening, in a sense. Although I’m still not sold on any one faith, I’m trying hard to believe in something. I feel like if I had faith I could relax in knowing all my suffering has a purpose and that there’s some great plan I just don’t know about. I’m hoping to find some sort of meaning that will give me enough strength to keep moving forward. I’m also hoping that there is something more after all this and that someday all the questions that plague me will be answered. I especially don’t ever want to feel that horrible, empty feeling of eternity.

Now that I’m feeling better, things don’t seem so desperate and overwhelming, but I’m a bit shaken up by it all. Thankfully, I figured out it was the antibiotic that was causing the pain and nausea. After three doses of the medicine and two days of hell, I’m feeling much better. The hard part is waiting for the memories to fade. It’s been awhile since I’d been in such a dark frame of mind and the memories that I thought were dull sprang back to life. My life always seems like the saying, “One step forward. Two steps back.” These past couple of weeks I’ve spent trying to regain some of the emotional lost ground, so to speak.