I know it’s not the same. I can’t begin to say that I fully get it. I cannot say that I am walking in his shoes so I will just say that I feel like I may have taken a step in my son’s socks.
Over the past year, I feel like I have had a very small glimpse into some of the emotions that my son and others living with diabetes must experience. The stress, worry, isolation and anxiety every time that they go to the refrigerator or someone offers them a meal. I can see where it becomes overwhelming and you want to forget all about this new way of living for a bit. This is why…
Last New Years I was given the “gift” of a gluten intolerance. If I eat gluten I get physically ill. This came seemingly out of nowhere. I told my doctor that I was too old for this to happen to. She just laughed at me and told me to live with it.
It turns out that “living with it” is not as easy as one thinks. I now have to watch every single food item that I put in my mouth. (Hmmm, sound familiar?) I have to read every label (Yes, I should be used to this but now I am looking for elusive sources of gluten instead of carbs). Suddenly I have had to relearn how to prepare food (and cooking used to be a joy!)
Going to a restaurant is no longer a source of relaxation. With gluten intolerance, I have to be on alert when we go out. I don’t have to guesstimate carbs, I now have to guess if there is gluten in my desired meal. The result is that there are often restaurants that I simply cannot eat in. Emotionally it can be overwhelming and depressing….why can’t I be “normal again” runs constantly through my mind.
There are times that I feel perfect…usually when I have successfully avoided gluten for a number of days. Those are the days that I stop thinking about gluten. I don’t pay as much attention to the labels. I begin to think that “maybe its really not an issue.” I get sloppy. I end up eating something that I shouldn’t. I feel like crap. I kick myself and then I think…”Is this what my son does? Does he feel okay and somehow forget that he needs insulin? Does he just go about his day and not worry about a test because–well heck he feels great!?”
Did my lecturing just compound the issue? I don’t need someone telling me “Well Barb, you know that you shouldn’t have tried that chocolate without reading the label”. I know these things but sometimes I just get complacent. I just don’t want to think about it…and then I pay dearly for my lapse in judgment. I am very sick for days. I then become more vigilant after my slips.
I have good days. I will have bad days. No amount of saying “I am too old for this” will change it. I have come to realize that this is now part of me.
It’s not the same as living with diabetes. I don’t have to check my blood or lance myself. There is no insulin pump attached to me. I don’t have to worry about balancing insulin and food. I won’t pass out from too much gluten.
In some ways it is similar though….I have to read every label. I am not counting carbs but I do search for things like wheat, malt vinegar and “may contain gluten”. I feel overwhelmed when I try to bake. None of my recipes work anymore. They all have to altered again…before it was to accurately count the carbs, now its to carefully substitute out all wheat.
I feel stressed when I step inside a restaurant. I must ask every server if they have a gluten-free menu option. I still worry. What if they make a mistake? What if they give me the real pasta? What if they don’t realize and give me a sauce with gluten in it? What if I order the wrong thing? (and I have) When it goes right, I feel the same glee as I do when my son and I guess the correct carb counts in a restaurant.
As I said, it has been a year. Some things are getting better. I have an incredible network of friends who have already been down this road. (There is an increased risk of celiac disease if you also have Type 1 diabetes) There are great Facebook groups and many more options in the grocery store. I have a cousin who is an amazing Gluten Free baker. They all provide tips and support.
This year has allowed me to look at things just a little differently. I have lived with diabetes in the house for close to 17 years. I know the terror of nights. I know the frustration of unexplained highs and lows. I am all too familiar with the stress as diabetes interrupts planned activities. Gluten issues don’t come with those stressors but they do have plenty of their own.
Gluten intolerance has allowed me to glimpse at what its like to always have to be aware around food. It has given me a new understanding about feeling good and “forgetting” about your condition.
I hate both conditions. My son hopes he never has to live this way. I do too but I also wish he wasn’t living with Type 1 diabetes. The only bright side to my gluten issue is that it has given me a small glimpse into some of what he has gone through on a daily basis for most of his life.