Wednesday, December 7, 2016

Navigating without a Compass

We all know that living with diabetes isn't easy. There are ups and downs and rollercoasters and burnout and frustrations. We bond together and we get through. I've always lived with diabetes (at least it SEEMS like always). I found friends to help me through. I have good days and bad days, but overall, I understand diabetes.

I have limits, there are levels to count and numbers to interpret that tell me where I'm at on my diabetes journey. A1c, and carb counts and blood sugar numbers are all things that are there, sometimes instantly, to let me know how I'm doing. High number, give some more insulin. Low number, give some less insulin (and treat that low!). A1c, let me know over several months how I'm doing overall. I have a constant glucose monitor that I wear, almost all the time. It lets me know when I'm getting too high or low. I can seen trends and make changes based on those trends.

To me, diabetes is, for the most part, understandable. Maybe not predictable, but understandable.
Things like blood sugar meters and constant glucose monitors are my compass in my diabetes life. They help guide me.

Celiac is a totally different story for me. I was diagnosed, while having no obvious symptoms (aside from anemia). I have none of the gastrointestinal issues that many associate with celiac disease. Because of this, I feel like I'm leading my new, gluten-free life without a compass. I feel as if I have no way to tell if I'm doing what I'm supposed to be doing.

I've stopped eating gluten. I read labels. I replaced many of my kitchen items. I call restaurants to find out about gluten free items. I talk with wait staff. But due to my lack of symptoms, I have no idea if I'm actually consuming gluten, in unknown ways.

I don't have a number to guide me. I can't know that I'm going it right because I feel better....because other than sleeping better, nothing has really changed for me in the past four weeks.

I feel lost. Like I have no compass and I'm unsure which direction I'm going. I know I'm at least sort-of going in right direction. But I could be miles off an be completely unaware.

Thankfully, I have a great medial team, friends who support me (off line and online) and a family who loves me. I know it will (or I hope it will) get easier with time. But can someone please come up with a compass for me? A celiac compass? That would be great.

1 comment:

StephenS said...

Sounds to me like you're doing well. I don't know how, but I get the feeling that you will find your compass. But for now, it must be difficult. I hope it gets easier.