I was having dinner with Carolyn the other night when she asked me why I never talk about my feelings with diabetes. It didn't really dawn on me that I don't discuss this much. I can't exactly remember what sparked the conversation either. I only know I have been thinking about it for days. Days.
I have really been trying to figure out why I verbalize so much of so many feelings...and I am totally comfortable doing that. I have always been an open book. I was under the impression that it applied to all of my feelings but I have realized this week that it does not. I think that I don't complain about diabetes much to others or discuss how I feel about it because I don't want to turn it into this negative thing in our lives. I don't want to spend every waking second of every day feeling sorry for us. I just want to live our lives and be as happy as possible, with diabetes in the shadows but not the forefront.
The truth of the matter is, I don't think people want to hear it either. Now, I know if I went to Carolyn and just let the flood gates open, she would be there with her best listening ears...as she always is. That would change things though in some way that I can't figure out. It's almost like I would be letting diabetes get the best of me...by allowing it to take over my emotions. Right now, I have this capability of compartmentalizing things. I almost feel like I have a storage area in my head. Sounds weird, I know. But I take things that have happened to me, good or bad, and gather information, details, reasoning, facts, etc. and I figure out how to process it and where to put it. I then put it in it's storage box, all wrapped up, and put it where I think it needs to be in my head and my heart. Filed away to use as experiences and knowledge down the road. I did this with diabetes and I now know where it is, what it means to me, and how I process it. I think maybe I am afraid if I start FEELING all of these feelings...it may screw up my storage system. I don't want that to happen.
I guess the best way to describe diabetes for me is that it is a constant in my head that I have grown accustomed to. It's always there, lurking. My alarm goes off at 6 AM and before my eyes even open...I think about Lily's numbers. Has she gone up or down since the 2 AM check? I try to just lay in bed and enjoy a few minutes of doing nothing prior to getting up but I can't stop thinking, "Is she okay in there?" So, without fail, I go in to do the Breathing Check. Morbid, I know, but only another D mom would get this so why share it with others? Once I realize she's still with me, I can go get ready in my version of peace.
Once Lily gets up, I do all of my diabetes routines in auto-pilot. I get everything ready for her lunch, count all of the carbs, make all of the necessary notes for nurses and teachers, etc. The whole time I am drinking coffee and trying to get dressed for work, I am fighting the image in the mirror. I am tired, I have bags under my eyes, and I am falling asleep while blow drying my hair. When I get up at 2 AM, it's for 4 minutes tops but that disruption in sleep is exhausting. And if her number is not on target at 2 AM, it results in other nightly checks. I am so used to doing this that it just feels natural to do so. I am used to operating under these conditions. It's been almost 4 years since diagnosis.
I go through my day as any other working parent. I enjoy the break the job has to offer. I enjoy the adult interaction. I enjoy having an office and computer and child-free place. The whole time, I am constantly wondering what effect her snack had on her numbers, did she eat all of her lunch, did she get too much insulin at lunch and is now going to go low at recess...it goes on and on. When I pick the girls up from school, I ask questions about their day and Lily's numbers.
My day is typical...for ME. We have a routine as does everyone else. Diabetes has just become part of that routine. I do not want diabetes to take over our lives though. I don't want diabetes to be the culprit for any and all things that go wrong in our lives. I just want it to stay a shadow. I don't want Lily's whole life to be around diabetes either. I think that may be part of the burnout she is going through now. For a long time, all that we did was somehow related to her disease.
I was also really worried about Eric and I trying to date with diabetes in the shadows but honestly, it hasn't caused a problem at all. Eric's girlfriend doesn't seen bothered or scared away and she is great with the girls. Matt was not at all phased by this disease. He has just dived in studying diabetes online and learning all he can. He even wants to help check her, etc.
So, I guess I don't tell too many people, or talk too much about how diabetes effects me daily, both physically and emotionally, because I don't see the point. I have D friends to vent to if I need to. It's much easier because it takes less words. It can take one word: tired, and they know exactly what I mean. I can say, "I have had a bad diabetes day" and no explanation is required. And the more I talk about it or discuss it, the more attention it gets and the shadow is more than likely to take over.