When I was first (finally) diagnosed, it was a relief. I had something and the doctors actually knew about it. But they don’t know much and there’s nothing really that helps it. There is no cure for Gastroparesis or ‘lazy stomach’. It was devastating to be diagnosed with a chronic illness at 18 years old. An illness that will never go away. An unwanted companion.
My biggest fear is having children. I’ve wanted to be a mother for as long as I can remember and always pictured myself with at least three children. Now I worry I won’t even be able to have one. With so many stomach problems, how will pregnancy go? How sick will I become? Will I be able to eat enough for myself and the baby? Currently meal sizes are small. About the size of my fist is enough to keep me full. My stomach doesn’t digest food as fast as it should and I don’t get all of the nutrients that I need because of it. A surplus of vitamin supplements tries to make up for it but it’s a poor substitute.
How would I be there for my child(ren) especially on my down days when I can easily go to sleep at 8:30pm and wake up the next day at 11:00am and then need a nap by 1:00pm and again at 5:00pm. If I eat too much I feel ill and want to lay down, however I tend to wake up even sicker.
It frustrates me that I don’t know what to do for work in my future. I want to be an elementary teacher. I love children. Yet after the six years it will take me to complete school, (not being able to go full-time. Refer above) will I really be able to work as a teacher? Going in before school starts and leaving well after it’s out. I have to eat when I get hungry, I get tired suddenly and basically stop functioning. But what else is there that I could do that doesn’t require so many hours and so much schooling? I hate the prospect of being supported the rest of my life. I’m so independent and the idea terrifies me. Whether it’s my father or a husband, it just doesn’t sit well to be taken care of. How on earth could I try to date and find a husband knowing that he will have to support me? How can I think that’s fair? It isn’t.
I watch my friends and family go to school, find jobs, get married, start their families. Life goes on around me, but for me it’s standing still.
I never know how I’ll feel day to day or minute to minute. Planning things in advance is tricky. It’s awkward to cancel a plan because suddenly I have diarrhea and I don’t really feel like going out. Or there’s the other spectrum of constipation that I’ve dealt with mercilessly for over a year now. Yes, you can be constipated and have diarrhea at the same time… Sometimes I go anyway. Sometimes I’m so dead tired I’m yawning the whole time and people probably think I’m bored. I’m not, I promise! I’m so happy to be out with someone. I don’t get that much.
I can sometimes eat at 1:00am, 8:00, 12:00, a snack at 3:00 and then dinner at 5:30 with another snack before bed. Those are good days (again meals are small). Bad days I’m lucky to get two meals in without feeling violently ill. I have to eat when I get hungry and stop when I’m no longer. Not when I’m full or stuffed, just when I’m not hungry anymore. No splurging on Christmas or Thanksgiving dinner unless I want to be bedridden for the next six hours. No all-I-can-eat at those buffets. I wish I could say my self-control were better. The problem is that I love food!
The truth is, I don’t want my illness to rule my life, yet it does and I don’t know how to stop it. I don’t feel in control. Not when car rides more than half an hour wear me out. Not when it’s usually nap time after dinner and I wake up long enough to read scriptures and go back to bed. My bed. It’s amazing how uncomfortable something can become when you spend so much time on it.
I hate the cold. Ever since I lost all of that weight when I first got sick, I can’t keep warm to save my life. Even indoor swimming pools sap what warmth my body has. I love the water. This is still hard to handle. Winter is brutal. Thank heaven for my big puffy coat.
My life feels full of unknowns and impossibilities. Just two years ago the sky was the limit and I could be anything and do anything. I still try. I might need a nap in between activities, but I go rock climbing and hiking. I love trying new things and just being with people. My illness makes for a lonely place.
It’s strange that I used to have my life all figured out. Maybe someday I will again.