This is What My Life is Like

I'm not looking for sympathy. That's not what this is about...but this is what my life is like; and it's not easy. For any of us. I don't know how I'm going to be feeling minute to minute, hour to hour, day to day. I can't predict it or control it. That makes it hard on the people around me.

Chronic nausea is misunderstood.

I’m not talking about an upset stomach. I’m talking about the type of nausea where you aren’t comfortable talking or opening your mouth at all. You can’t lie down, because it makes it worse. It’s difficult to move around, you feel that unwell.

It is highly variable. I know that if I’m too active, the nausea increases. I know if I drink too quickly or too much, the nausea will get worse. Too warm, too cold, or just tired. There are plenty of triggers. I listen to my body and try to make adjustments according to the cues it gives me. But there are still those unexpected bouts. Those instances that can't be explained by level of activity, oral intake, dehydration, etc. It is exhausting.

I have to contend with random episodic vomiting. Unpleasant. Distasteful. Terrible. Horrible. Punishing. It wears me down. My body has yet to understand the concept of timing. As in, if you’re really going to be unwell, some circumstances are better than others.

The pain. There’s the burning pain in my stomach. There’s the abdominal pain. The neuropathy in the hands, legs, feet. Funny how it all just became a part of my day. And new pains that emerge. These usually indicate a complication and require more attention.

The time. The cost of time. The time it takes to prime an IV line. The time I spend infusing. TPN. Extra Hydration. Deliveries. Home Nursing visits. What time is it? Time to take a bag out of the fridge. Not just my time, either. Having gastroparesis means I consume a lot of other people's time.

The worry. That I have and the stress this disease brings to John, Andrew, Jessica and our extended family. The anxiety from the uncertainty.

I can’t just shut everything down. Close the doors, turn off the lights and go to bed. First, it’s not my nature.

Second, the choices I make have a direct effect upon those around me. We did not choose this for our family, but we will do what we can to live our lives with it.

Third, there are things to be done, places to go, people to see, lives to be lived. Life goes on and people move along their paths. It’s important that people, places, and activities that were elements of our life when I was well are included in our days still. To exclude them is to admit defeat to the disease.

Remaining active and involved gives me hope that I may once again engage in life more fully.

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