Adjusting to diabetes is a big learning process
My daughter turned to me at dinner last night and said, "They should call it 'live-a-betes' rather than diabetes."This is a great revelation for me because it captures the idea that having diabetes means you live with it every single day, every hour. Since being diagnosed, I have realized that very few people understand what this disease involves, and for those of us with diabetes, it is a steep learning curve.
I've had the symptoms of diabetes for years, and I think it just went undiagnosed. At the same time, even after being diagnosed, it took months for me to get out of denial-land and believe I really had the disease.
The most convincing way thing for me was to eat with my husband, wait an hour and then test his blood sugar as well as my own. He was very patient as I insisted that maybe this was important for him, After all, he too might have diabetes. The numbers on my little glucose meter don't lie.
Even if he ate pancakes with syrup, and I had plain toast, my blood sugar was higher. The difference was significant. The sugar was entering his cells, and it was not entering mine. It was just racing around in my blood. After many tests, I finally concluded that he does not have diabetes ... I do.
Diabetes is much more than just blood sugar levels. Some of the organs in my body are working harder than someone without diabetes. I need more rest. I have to monitor how I spend the hours in each day very carefully to be efficient with my energy and the things I want to do.
Diabetes is all about personal energy efficiency because I do not have the same amount of energy available as others. I have about seven hours to use per day. That sounds like a lot, but most people are using 12 to 14 hours per day.
Day planning takes on a whole new meaning when you are trying to live with seven hours a day to spend rather than 14.
Crowds, hugs and being around people who have colds are problems. Diabetics have a weakened immune system.
I catch things easily. Not such a big deal, except I can't shake it once I get it. My cold will last three times longer than yours, and if you need a round of antibiotics, I will need three rounds.
A vicious cycle ensues. As a result, I try to avoid being in crowded room where the chances are much greater that I'll be exposed to sick people. I go out to the theater, I attend events -- I just go into things facing some risks, so the event has to be really worth the trade.
In addition to repeated colds, diabetics get some very odd things. I was recently treated in the emergency room for a yeast infection that went from my tongue down my esophagus to my stomach. It was incredibly painful and this special thing is usually only seen in diabetics, people with HIV and babies.
These surprise illnesses become research projects so I can figure out what I can do to avoid that happening again. I spend lots of time researching. Even though I have a huge manual on diabetes, there are still surprising things that come up that aren't in the 500-page book given to me by my health care team.
Chocolate. Being a diabetic, I have an incredible craving for sugar. I think about sugary things all through each day. I've never been the type to eat a whole pint of ice cream. My particular weakness is chocolate cake, chocolate raisins, chocolate syrup, pretty much chocolate anything.
It's not good indulge this with me. Please, readers, don't send me all the information on sugar-free chocolate, I know all about it. I never crave this. I'm just saying, the craving for sugary things doesn't leave me, I'm like a dry drunk.
The other day I was in the supermarket to buy a chocolate cake for my knitting club, not for me, of course. Cake in hand, I ran into my nutritionist. This is what I hate about small towns. I am talking to her and literally holding my chocolate cake behind her head so she won't see it in my hands, as if she didn't notice the box I was holding behind her head. Try standing a few inches from someone while hiding a shoe box in your hands.
My only consolation is that I don't eat sweet things anywhere near as much as I think about sweet foods. I think about it all the time.
The gift of my diabetes is that I have learned to live within my means. I have adjusted to the immune system needs and the energy available in each day. Acceptance makes living with this perfectly fine.
What's challenging is trying to explain it to other people. I was taking a tai chi class for diabetics and the teacher announced that all of us need to remember that if we lose weight and eat better, our diabetes will go away.
I was really stunned. This is only true for some diabetics, not all. Some diabetes is not going to go away no matter how thin you are or how much you exercise.
It's a very difficult disease to understand because it requires tailoring a lifestyle to deal with the energy, illness, organ issues, well-being and stress levels.
For some people, there is no option to be free of this. I am writing this column because I realize that most people don't know what it means when someone says they have diabetes.
Even with having diabetes, it requires continuous learning as this disease is progressive. For some people, it progresses very slowly. For others, it progresses quickly.
Sarri Gilman is a freelance writer living on Whidbey Island and director of Leadership Snohomish County. Her column on living with meaning and purpose runs every other Tuesday in The Herald. She is a therapist, a wife and a mother, and has founded two nonprofit organizations to serve homeless children. You can e-mail her at features@heraldnet.com.
© 2009The Daily Herald Co., Everett, WA