I've been fighting cold sweats, fever and overall discomfort for a couple of weeks now. I finally decided to bite the bullet and take an antibiotic. I try to avoid them, as they almost always reek havoc with my stomach. On top of that, I'm waking up every couple of hours from the time I try to fall asleep, to the time I have to wake up. I haven't even been able to take a nap lately. I'm no stranger to insomnia, it's just that I'm more accustom to having racing thoughts keep me awake, which I try my best to turn off. Recently though it's more discomfort waking me up than anything else. It's especially annoying not being able to toss, turn or reposition myself. As it is, I've had to adjust to sleeping on my back, something I never did before my accident. I can honestly say, I haven't slept longer than four hours straight since I was on my feet and eventually, it always catches up with me.
Living in hospitals, rehab and the nursing home was the worst, because it was frightening being paralyzed and on my own (no family or friends with me) at night. Not to mention, perpetually noisy. I had zero control over the schedule or the waves of medical staff that constantly came and went. Living in my own apartment has helped to decrease my nighttime stress and there's certainly less noise. All in all, I still wake up tired most mornings. Part of the problem is the fact that I can't move, like the average person. Although I don't always feel uncomfortable, my body reacts to being in one position for too long and causes my legs to spasm, or I get sweaty or I get a weird tingly sensation, which eventually wakes me up. Either that, or I get too cold, or too hot, or my hair bothers me. Naturally, I need help to get repositioned. Sometimes it takes a few minutes for someone to hear me (especially if they're sleeping) and I end up being wide awake by the time the person leaves my room. At the nursing home, it was procedure to get turned every two hours (I felt like a rotisserie chicken half the time). I'd be lucky if I could fall back asleep before the aides would come again and cycle continued on and on, every night. Despite all my efforts (medication, meditation, white noise, etc.) of battling my insomnia, it's an on going issue.
Being over tired often sets the tone for my day. There's many days that my lack of sleep seems to zap me of all motivation. The first few years post accident, I got up in my wheelchair every day (regardless of how I felt, partly because I had no choice in the facilities). Ever since I got a bedsore on my upper thigh in 2008, sitting up has become hit or miss. Sometimes I feel fine and other times I feel like I can't get back into bed or lay down fast enough. It makes me not want to get out of bed at all. For the past six months (give or take) I've been staying in bed 5-6 days per week. My nurses, aides & family sometimes get annoyed with me constantly being in bed, because they worry about my overall physical and mental well being. I understand that it's good for my body to sit in my chair, for blood flow, digestion and breathing. However, I'm already forced to sit up for two to three hours on the days my nurse comes, so on those days, I'm ready to lay down once they leave. I don't see the point in going through the hassle of getting fully dressed and transferred into my chair, only to want to reverse the process an hour later. It's just not worth it to me.
Ironically, I probably sit up the same amount of time in my bed as the days I get up into my chair. The difference is, I can lie down when ever I want, in bed. If I'm in my chair, I need to be transferred and partially undressed. My catheter bags also need to be switched and cleaned. Given the hassle and the fact that my aides come at set times, getting up just becomes less appealing, especially if I'm already tired, or feeling sick. On top of all that, the only thing I can't do in bed is paint. The list of activities I can do on my own is pretty slim, so most days it doesn't really matter if I'm sitting in a bed, or a chair. I can even do most things while laying down: watch tv, read, talk on the phone, use my iPad, control my PC by mouse & play Nintendo DS.
I could understand concern if I was completely lethargic and apathetic and spent my entire days sleeping or being zoned out. To me, that's giving up and it's not the case with me. Most people just fail to consider that there's still a big portion of my day that is out of my control and spent doing things I'd rather not be doing. I can't do things on a whim, or instantaneously, because I'm always relying on someone else to assist me. On top of that, there's activities of daily life (ADLs) that are simple to a healthy person, but have become stressful and traumatic for me. Gong to the bathroom is the number one stressor in my life. I don't even usually discuss it in any detail, out of embarrassment and shame. Unfortunately, I have no choice in the matter. I have to eat, therefore I have to go the bathroom. Something that should be a personal, private matter, now practically dictates my schedule and involves several people.
Most people probably don't even consider how paralysis (high level injuries and severe degenerative diseases) can effect every tiny detail of someone's life. I think it's too disturbing, or sad for some people to even want to know. Then there's the people who could care less, because it has no impact on their lives. The truth is, anyone could be in my shoes. It took less than a minute for my life to change, forever. It frustrates me that most people don't see how lucky they are, just to be able to care for themselves. Things that were once second nature to me, like brushing my teeth, taking a shower or going to the bathroom, have become things I dread.
I cringe every other night, because I know the nurse is coming the next morning. Having to have a permanent catheter is bad enough, but needing a bowel regimen makes me want to disappear into the floor and never eat again. It's not something that's easy to empathize with, because most people don't even know what a bowel regimen (or bowel program) is and because the normal person has sensation. It can't be that bad right? Yes. Yes, it can. For starters, just the fact that another human being has to assist me with something I had been doing solo since I was probably three years old, is stressful. It's not an aspect of life I've ever been comfortable with, and now my feelings of embarrassment and stress are off the charts. Secondly, I can't feel any part of the process. I feel no urge to go, no indication that I've gone and no relief or comfort in having gone. A nurse has to essentially, manually stimulate my body to go and then continue to check inside to see if it's worked. I'm usually physically uncomfortable the entire time, because it forces my blood pressure to rise and the commode is not very comfortable. The whole ordeal can take up to two hours, and I have to go through it every other day. It's also very emotionally draining for me. Just imagine having a stranger (at first. I have several nurses that I've gotten to know over time) sit with you in the bathroom while you go, and then clean your bottom for you. It's horrific, even though that scenario doesn't cover the full extent of the regimen.
Even with a bowel regimen, there's always the wonderful anxiety that comes with being incontinent, and never knowing when or if my body may decide to "go" for no reason at all. Having to wear Depends in your twenties and thirties, is not an easy pill to swallow. Having the fear of an accident is on my mind every day, and especially if I have plans to go out or have people over. The threat of it happening is very real and often completely unpredictable. I try to avoid know causes, like antibiotics, but there have been many, many days where I've needed to cancel plans last minute. Either for fear of incontinence, or feeling ill if things don't go smoothly. I try my best to ignore it all when it's going on, but I'm never that successful. After that, I have my shower. Yay. Yet another person to see me naked and have to wash (aka touch) every inch of me. Then it's all topped off with having someone else brush my teeth, hair and feed me breakfast (like an infant). It's exhausting. Unfortunately, it hasn't gotten any easier over time, for me to deal with most of the daily ADLs.
I almost never discuss my personal care with people other than nurses, aides and a handful of friends and family. I'm writing about it today, because I'm just so fed up. I feel like people should know EVERY aspect of living with paralysis. Sometimes I feel like going outside to find a random huge crowd of people and start shouting through a megaphone all of the stuff I deal with, everyday. It also makes it hard for me to be sympathetic to most people (healthy), because their "problems" all seem so trivial and stupid to me. I'd welcome most things people complaint about, in exchange for being able to care for myself. I get so angry and upset, because people expect me to live like this and either have no clue what my (or other people in my situation) life is really like, or if they do know (medical professionals), they still have no cure, or solution. "Just deal with it, and move on."
The worst is when people tell me, "well, at least you're still alive." Yeah. Great! It's not exactly easy to just forget twenty four years of a "normal" life and just be content with living, for the sake of being alive. The fact of the matter is, I'm left with few choices. If I want to "move on" with my life, it means having to deal with ALL the stressors, every second of the day. It means acknowledging the fact that I'll be chronically tired, often sick (UTIs are very common with catheters, despite how clean you are), have instances of incontinence, reliant on medication, need assistance from others, be susceptible to skin break down, be at risk of dying from respiratory infections, weakening bones, and inevitably have to do things that make me very uncomfortable (for my own health and cleanliness). It's my life. Take it or leave it. I don't get a breather. I can't remove myself from the situation. There will be many days that I'm sad, ill, or don't want to bothered with anyone, or anything that's not absolutely necessary. I can't understand why or how people still expect more.
Just because I'm feeling ill or tired, or just don't want to get out of bed, doesn't mean I'm giving up. Although I might not be as busy as I was the first two years I've lived in my apartment (2007-2009), I still try my best to be productive. I'm still painting, albeit much less frequently. However, I've continued to look for ways to share my artwork and have been exploring digital art. I work on my website from time to time and try to post at least two blogs per month. On top of that, I'm always networking and hunting for ways to help advocate for a cure. My intentions are always to raise awareness. I don't strive to be an inspiration or motivator for other disabled people. Other people with disabilities (paralysis specifically) already know what it's like to deal with my day to day struggles. Either that, or they were born disabled and have a totally different perspective.
I can't speak for anyone else, but I can educate people on the facts and use my life as an example. I don't expect other people to cope the way I do. Every person has their own story. Every person that's had a spinal cord injury goes through a unique experience. Your lifestyle, age and health all factor into how much loss you have to face. Each injury is unique. My goal is solely to educate the general public about paralysis and open people's eyes to what it takes to keep moving forward and all the obstacles that come along with paralysis. No one should have to live with paralysis and I feel it's important that people understand why we so desperately need a cure.
Personally, I'm at a point in my life (and my injury) where I have a tiny glimmer of hope left for a cure(that I'll be able to benefit from), but live each day at a time. In my mind, I'll be paralyzed until I die. If a cure is found, that'll be fantastic, but I have to face the reality of the present. I can't plan my life around "someday", "might", or "if." The truth of the matter is that, most days I don't feel motivated. Many days seem overwhelming. I'm sick of being sick. It's incredibly hard having a chronic condition. There are certain things that are inevitable and at times it's hard to face the day, because I know what's coming. It's never easy, but I try my best. I think that's good enough.
Sent from my iPad
