Friday, December 4, 2009

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.

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