Thursday, August 27, 2009

What If? Every Day Decisions

We all know just how unpredictable the symptoms of digestive motility can be. It's a moment to moment thing. In one moment, we may have a brief burst of energy. In one moment the digestive symptoms may be tolerable or may be what we have grown accustomed to in our daily lives with these disorders. How we feel governs much of what we are able to do, are determined to do, or are willing to commit to ... but then again, it's so unpredictable.

Do I go out shopping? Do I go visiting? Do I have company come over? Do I go to work? Do I go to school? Do I take my own car? Do I go on a trip? Do I go out to a restaurant? Do I call the doctor? Do I go to church? Do I call a friend? These are just some of the daily decisions that motility sufferers have to make each day?

Part of the mind process that calculates weighing the risk of each decision involves the following: What if I am out and I have to rush to a bathroom? What if there is no bathroom accessible? If it is a public bathroom, it will be embarrassing if I have diarrhea and between the odor and the sounds of gas expelling from my bowel movement, it will be humiliating. What if I vomit in public? How will I deal with the embarrassment? What about cleaning up the vomit that gets all over my clothes, shoes, floor, table, car, etc.? What if I have something to eat or drink and I begin to choke because of esophageal motility problems? What if I get sudden excruciating pain and I am in a public setting? What if I am in a restaurant and there is nothing on the menu that I am able to eat? What if I am on a plane and my symptoms become exacerbated? What if I am on a boat, away from home, at work, in school? What if I don't have the energy?

Sometimes, by choosing to take a risk, we become disappointed with ourselves for not being able to meet our expectations. Other times, people can disappoint us because of their reactions and insensitivity to our health situation. It is not an easy road.

Fears and embarrassment can often result in isolation and loneliness in patients. Instead of going out, they would rather stay in the comfort of their home. But the social aspect in a patient's life is extremely important and without it, there is a greater risk of depression, self-absorption, and more focus on symptoms and inabilities versus abilities.

Personally, I have always been a risk taker who thinks things through before taking the plunge. During our recent three-day AGMD Digestive Motility Symposium, when my health was pushed to its limit by all the preparation involved, my symptoms were intense during the entire program. Questions kept echoing in my mind? What if I can't talk because my voice is in spasm? I need a contingency plan so I ask members of my family to be on alert with the prospect of taking over in the event that I am unable. During the program, I got intense noncardiac chest pain throughout one entire day. My husband was on guard as he saw me open my case to take out the pills that I needed. The nausea was so intense that I thought I was going to vomit at the table. My belly was distended to such a large degree, that I had to wear a suit with a long jacket to camouflage the unbuttoned, unzipped waistline. I had such grave malaise and fatigue that it took every ounce of energy I had just to sit on a chair. The good part was that the event took place in a hotel so I was able to periodically go to one of the rooms to use the bathroom, sit down for a few minutes, and take a few private moments before once again entering into the public domain. The other good part was that I knew should I have an emergency, I had some of the best gastroenterologists in attendance who I am sure would be able to assist me. But even so, the risks and decisions from the littlest to the biggest all were made on the basis of my health ... how much I was willing to push ... to accept ... to deal with ... and to endure.

After the symposium, my health totally crashed. Every symptom has intensified to a new and heightened degree. New symptoms have emerged. Life has become even more challenging. Perhaps it's just a coincidence and it would have happened now any way, but I may never know ... it's the unpredictable nature of digestive motility. The important thing is that I took the risk knowingly and carefully thought out. And with tremendous faith and the inspiration of all those who suffer from digestive motility diseases and disorders, many of the risks that I am willing to take outweigh the potential consequences.

Just recently, I heard from a member of AGMD who had many concerns about traveling out of state to see her family. How would she do on the plane? What about eating? She brought her own food, but still, there were concerns about how others would perceive this. Away from home, she had fears as to what if her symptoms became exacerbated? The visit ended up being a success and "uneventful." Another victory! A risk taken and overcome.

Being in the comfort of one's home, patients can often find some solace. There is routine, there is familiarity, and there is no embarrassment. There are still decisions to be made and risks that must be evaluated, but somehow, many of these can become less daunting when one is in his/her own familiar setting. As the song goes, "Be it ever so humble, there is no place like home."