A complicated post that is really long and reveals a lot of kind of personal stuff. Enjoy.
I’ve been thinking about the process it takes to really get a handle on diabetes. It’s no secret that being diagnosed with a chronic illness causes a grief process for the patient. How will my life change? It truly is the death of life as you know it for many chronic illness patients.
When I was younger, I used to hear my parents converse with other adults about my condition. “Which type of diabetes does she have?” “Type 1, the juvenile kind.” “Oh, the bad kind.”
Wait, what? The “bad” kind? I used to have it in my mind that people with type 2 diabetes had it easier. They didn’t have to take insulin shots, after all. They didn’t have to worry about blood sugar lows. But lately after talking with type 2’s both online and in person, as well as with spouses, children, family, and friends of type 2’s (you know the, “Oh my uncle has diabetes” conversation when someone sees your insulin pump and asks about it? Hey, at least they didn’t say cat!) I’m learning a lot.
What I’m learning is, of course, that it’s not one type or another that is “bad.” All types of diabetes suck. It’s plain and simple. When you’re younger, you have to deal with not being able to eat dessert when the meal is high in carbs (well, we used to, regular and NPH, anyone?). You have to deal with having to stop in the middle of a softball game and check your blood sugar, or watching your mom run across the soccer field with the meter you left in the car, waving it over her head. Honestly, when I was younger, shots weren’t actually that bad. It was different. It wasn’t the shots that bothered me. It was the constant pricking of the fingers and the shear terror of the reprimand I would get from my parents and my doctor if my numbers were out of range. “What did you eat?” “Why didn’t you eat enough?” Don’t get me wrong. They weren’t bad diabetes parents. They could have been much worse and like most parents of children with diabetes they had no idea what to do or even the nature of the disease that their daughter was suddenly dealing with.
I can (barely) remember what it was like not to have diabetes. Many people with type 1 can’t. I can remember eating birthday cake and Halloween candy without thinking about it and drinking grape soda (the thing I miss the most and cannot find a diet version ANYWHERE). I can’t imagine living my entire life and then having to change my lifestyle after years of living one way. It’s never easy to change your lifestyle, but when your life depends on it —
Okay. I have a confession to make. I talk about it like I don’t know, but guess what? With the risk of sounding pompus and vein –
No, really. OK guys. When I was first diagnosed, I thought that this diabetes thing wasn’t that bad. But before I was diagnosed I had already developed bad habits of snacking at unnecessary times. I have said before that the reason that I knew what diabetes was and wasn’t too scared of it was that I had been reading The Babysitters Club long before I was diagnosed and had a general knowledge of diabetes because of the character Stacey, who lives with type 1 diabetes in the series. Another character, Claudia, has a junk food addiction and hides junk food in her room. I kind of thought this was cool and made a habit of stealing food from my parent’s kitchen and stashing it in my room. After diagnosis, I stopped for a while, but I missed the habit and continued the sneaking of food. My parents knew, based on the missing food and the high blood sugar numbers, exactly what was going on.
Later on I began to disregard diabetes altogether. I wasn’t necessarily angry about having the disease, but I did do a good job of pushing it to the back of my mind. First I began lying to my parents about my blood sugar. The meter would beep in at 320 and I would write in my log book and tell my parents, “120.” I even lied to the school nurse when I tested at lunch. After that, I first stopped logging and then stopped testing altogether. I would go weeks without a blood sugar test. My mindset was this: you can ignore diabetes for a few weeks, just get it together about a month before you go into the doctor’s office to bring down your A1C at the last minute. But we all know that “control” takes more than a month. Somehow, my A1C never got above 9 throughout my high school years. It capped out at 9.1 at the end of my third year of college, in the midst of skipped doctor’s appointments and insulin shots (it was too much for me to carry the pen to the cafeteria). I was tired all the time, I had no energy.
I have also said before that nothing really clicked until I started reading blogs online. I guess that reading about other people taking care of themselves really kicked me into high gear. I think the thing that affected me the most was Kerri Sparling’s journey to have a successful diabetes pregnancy. I know it was always in the back of my mind that I might not be able to have children if I didn’t take care of my diabetes. But at that point I realized that it could happen some day if I started working towards it now. Whether it was five or ten years down the road, I didn’t know, but what I did know was that it wasn’t going to happen overnight. So somehow, with the encouragement of the online community, I began working towards that elusive lifestyle change.
Now that I’ve got a handle on how to take care of my blood sugars (well, not really, but I’m at the very least not ignoring it), my thoughts and efforts can expand to encompass other areas of my health. Like my body weight. Umm, talk about lifestyle change. Talk about difficult. I am having the hardest time finding an eating pattern as well as an exercise routine that I can stick with. It is so overwhelming to think about it, and even though I know it’s what’s best for my health, my diabetes, and my future, taking the first steps is the most difficult thing I have ever done for myself.
Read: Newfound respect for people with type 2 diabetes and other health concerns that require this type of lifestyle change.
I have written a lot on this topic. A lot. A lot. A lot. A lot. At times I can’t understand why my efforts go without results. And at times, I know exactly why. I give up, far too easily. And some how since I started this journey 10 months ago, I have done nothing but gain weight. I am awesome at saying, “I’ll just eat this today and start tomorrow.” Same thing I told myself about diabetes control when I was in high school and college (the first time) and that took me ten years to figure out. Which, while I would NOT like to wait ten years to start losing weight, still does give me hope. If I keep trying, eventually I’ll get it right. Eventually I’ll win the mental game. And if I don’t, that’s okay too. I’ll just continue to try and live my life and find happiness in the other, non-diabetes things in life.
Just Keep Swimming.
I can totally relate to your struggles with food… I’ve spent all my life dealing with that, with or without Diabetes. For what it’s worth, I wrote a blog post about what I feel, and the only thing that has helped me… from my life long journey with this, on TuD… http://www.tudiabetes.org/profiles/blogs/my-big-diabetes-diet-secret
Good luck. It’s an ongoing, lifelong process. And if you want to have a healthy kid and stay on top of your diabetes, you can do it.
In the meantime, try calling these people (the number’s on their site) and ask where you can find this:
I got grounded from reading Babysitter’s club when I started hiding food in my bedroom. I’m glad I’m not the only one who did that!
And I’m sorry about the grape soda. It was one of my favorites as a kid. I haven’t had it in years, but if I ever see a diet version, I’ll be sure to let you know!
hey sarah! diet grape soda– http://www.faygo.com !!!my husband emailed them and they sent store names in our area that either carried the diet grape soda or would order it for us! I have about 1/2 a case left in my basement right now!!! also…I lived for years waiting for the day that mt dew would be made in diet version (tells my age, huh?!!) understand! loved your blog. will be reading more!!
Very insightful. It’s really amazing the power that connecting with others has. In particular the chatting we do on Twitter just about the day to day thoughts and events and struggles and successes. I know it has made a big difference to me. Thanks for chatting with me Sarah. 🙂
Loved hearing your story. I’m a mother of a 6 year old diagnosed 2.5 years ago. We’re struggling now with hiding food. She is obsessed with eating from the time she gets home from school till she goes to bed we argue about it. I don’t know how to handle it. She needs some control but at the same time she’s only 6 and doesn’t always make the right choices. Got any suggestions? As far as the weight loss for you…I’ve always been pretty health conscious. I lift weights and am an avid runner. My secret is having a partner. If I know that someone is waiting on me I never talk myself out of exercising. Good luck!