If My Body Came With A Zipper

There are days I wish my body was designed with a zipper. I often tell my husband, "I wish I had a zipper and could climb out this body, if only for a moment." That zipper would be my way to freedom, a way to escape this pain-riddled body. I hurt constantly—at least during the hours I am awake. Sleep is an escape for me, but who wants to sleep all the time? Not me. Not anyone.

See, I suffer Lyme disease that has manifested as Visceral Hyperalgesia (VH). Visceral meaning "organ." Hyperalgesia referencing "hypersensitive nerve pain." As a bonus, I sometimes get nerve burn which sears deep into my pelvic region making me cower and cry. What this means for me is I have high levels of overactive/hyperactive nerve pain throughout my esophagus, stomach and, sometimes, pelvic region, never relenting despite my pleas. I find myself silently screaming inside, begging my body to stop the pain and let me rest. At work, I find myself quietly begging for silence to surround me, as noise leads the pain to become more difficult to manage. Think back to when you have experienced an ongoing headache or severe stomach aches, or any type of ongoing internal pain, the last thing you need is noise. Correct? Silence is all you desire along with the comfort of your dark room and bed. Image those of us who deal with pain daily, yet somehow we find the strength and will to make it through the day.

As the result of my esophageal and stomach VH, when I consume food or drink, it is not an enjoyable experience and brings unwanted symptoms to surface, leading me to feel worse. When I was healthier, I found solace in eating, now I experience fear of pain and discomfort. This means I don't go out to eat with friends and family—my favorite past-time of socializing. I have eaten the same foods every evening—the only time I intake a full meal—since January 2014: organic carrots, organic potatoes, and a small amount of finely-shredded chicken or beef. I get terribly bored of the same foods, but at the same time am grateful that I have something to keep me alive. If I am lucky, I might be able to eat a few pieces of organic chocolate laced with mint (as I did tonight) or yogurt with probiotics in hopes to soothe my esophagus and/or stomach. In preparation for my one meal, the food comes out of the crockpot soft, it is then mashed and finely shredded into a baby-food-like substance so it won't stretch and irritate my esophagus/stomach as much. For a drink, I mix a chocolate (yes, organic) protein drink with soy milk to wash it down, one small sip at a time. All this put in place, and I still find myself dealing with debilitating symptoms that force me to do nothing but lay there as still as I am able on my bed after the meal. At the same time, I have to make sure I am intaking enough calories to keep weight on, so I don't find myself less than 100 pounds for a third time. No medications suggested by doctors (20+ including the Mayo Clinic) have helped or relieved my symptoms. No medical procedures have found anything that could be treated. So, I stand in waiting, doctor after doctor, test after test, hoping something will be found and treatment will one day come.

My social life—well, that pretty much doesn't exist unless you consider work as a form of social life. I don't. My close friends and family, who will sit with me in bed and watch a show or two when I am at home on the weekend, have become my social ring. It's hard on them, I realize, not being able to do anything to help other than sit with me and keep me company--even if I fall asleep in the middle of the visit. For the company and support, I am grateful. Invisible chronic illness can isolate you and bring you to a deep feeling of loneliness.

My work life—it is hard for others who are healthy to understand a life of invisible chronic illness. We don't look sick; so how can we be so sick? They don't realize how much energy is exhausted to make it through one 8-hour workday. They don't understand why I can't go out to eat with them or why my life has so many limitations or why it is so structured that I can't participate in events after work. Simply, invisible chronic illness is often unpredictable to those of us who live with it and unfathomable to coworkers, unless they have had experience with a loved one or have it themselves—which I have found is rare. As many have stated, "Until you walk in other's shoes..."

Let me tell you, as soonI leave work and as I reach my front door at 5 PM, I am exhausted from not the work, but simply from managing all my symptoms throughout the day. I remove my "I am fine" mask and am headed directly to bed in an attempt to calm my symptoms and rest my body with heating pads and ice packs—half of the time it calms down some, but never enough for complete relief. I don't like living this way. It is not what I had planned for my life, but this is where I am on my life's journey. I have breathlessly asked why so many times: Why do some of us get this challenge in life, while others do not? I can't say.

Those dealing with chronic illness are always in the fight of their life to feel better, to find cures, to participate in life, to feel joy and happiness. There are no easy answers. Our bodies are amazing, yet in the face of illness can become very complicated. I often wish my body came with a zipper; I could escape, giving my soul a break every now from the constant pain and agitation I live with daily. Unfortunately, invisible chronic illness is also often paired with exhaustion, depression, anxiety and other psychological aspects we battle. It is a constant struggle, a constant cycle, a ride you wish to exit.

The truth is... if I could escape with the simple unzip and crawl out, I may not crawl back in, knowing I would be entering a "broken" body. But wouldn't it be nice just for a moment, for an hour, to step out and feel nothing—free from pain, free from worry, and free from anxiety and depression? Wouldn't it feel great to run around without a care in the world? To go wherever and whenever you wanted. To dance, run, play without exhaustion. To go out with friends and actually feel like socializing.

I will say, living with invisible chronic illness has put things in perspective for me. I don't worry about the trivial things as I used to when I was healthy and running three miles a day, eating anything I wanted and wandering the world without the need to make decisions based on my health. My father always told me, "If you have your health, you have everything." I didn't understand it then, but I definitely understand it now. He was correct in his statement. Wouldn't it feel amazing to have the option to bask in the sun and dance in the rain, to take a walk or ride a bike without fear of flare-up? To eat with friends, and socialize outside your bedroom walls. But the fact is, even if I had a zipper, in order to live, I would have to climb back in and zip myself up and the symptoms would be there waiting for me.

Reality is my body was not designed with a zipper. I don't have the option to escape, so I do my best to function as normally as I can. I eat what my body will accept, work to pay the bills, rest when my body needs it (which is a lot), manage my pain the best way I know how, and I pray. I move forward, one step at a time, one hour at a time, and some days one minute at a time. I remain thankful for those who stand by me and try to give grace to those who don't understand. I live, and I do it without a zipper.