This past week was spring break for my kiddos so writing was put on hold as I soaked in the time with my two crazy seven year olds. As usual the time off came with some transition in the early part of the week as we all settled into the lack of our morning school routine and being in the same in the house together all day. It is always a bit of a rough patch that first day but I am always in awe as we gradually begin to blend together and I find myself feeling like my little pack is back, quickly forgetting what it was like to spend my day in the quiet solitude of work. It is like baking a cake. All the ingredients are added one by one and with some careful mixing they become one blended batter.
We spent our days visiting with friends we don’t see during the school year, cleaning, hiking, going to the zoo and even checking out a state robotics competition (Much more intense and fun that we could have imagined. Did you know robotics teams often compete in themed costumes and have organized cheers and play by play announcers which make the competitions louder than most basketball games? It is a collection of sites, sounds and brainpower.) It was a week of no grand plan, just a week of being together and getting refocused, which always proves to be the best plan.
Now the little ones’ brains are nestled back in the care of their wonderful teacher and I am back at my kitchen table in a quiet house remembering where I left off.
In my previous post “We think you might have diabetes” I went through the timeline of events of the first few hours of my diagnosis, this post looks back at the first few months. Following my hospital stay I was sent home with a few pamphlets, a bottle of insulin and a few syringes. I was also given “a sliding scale” for my insulin. I’ll be honest, a “sliding scale” is kind of like giving me a blindfold and a dartboard and saying “here put this over your eyes and throw the dart. You might hit a bulls eye…or you might hit the wall or a random person walking by.
A sliding scale is basically a range of blood sugar readings that correspond to a dose of insulin. So if you blood sugar is within a range of 150-200 you would give yourself 0.5 units of insulin (I honestly do not remember the sliding scale I was given as it was so long ago. So my apologies if this is not overly accurate).
This sliding scale was ok for the time being as I was in a state of total information overload and my brain could only comprehend so much at that time. I had learned how to test my blood sugar in the hospital and how to give myself a shot but that was truly the extent of my self-care. Every time I had to test my blood sugar and give myself a shot I covered the kitchen table in supplies and charts and notes. It was a big process which I look back at now and smile as I now test my blood sugar while running, in the middle of the night with my eyes literally closed, and while driving (shhhhh!).
In the days that immediately followed I had a meeting with a dietician who was going to help me make sense of the new “rules” of eating. She was a wonderful person who was about my age, newly married, and was a runner so is was certainly a comfortable relationship. She told me a number of things that I don’t completely agree with now, but at this time this was all new and I had yet to realize just how intimately I would get to know the daily cycles, patterns, and reactions of my body. The majority of living with this disease can truly only be learned by living with this disease day in and day out.
I remember being told not to eat egg yolks and only eat fake butter because of the cholesterol and that I should only drink skim milk and only eat cereals and breads that have whole grains. Twelve years later I have new perspective on these guidelines but this is the information I had to work with at the time. She told me that I didn’t need to go to my house and throw out all my food. She said instead I needed to start replacing things each time I went to the store. I remember putting on a brave face as she poured all this information into my brain and I did a lot of nodding and smiling. As I sat in my car at the end of the appointment I called my husband and the tears began to flow.
I have said for years that I didn’t cry when they told me I had diabetes, I didn’t cry when I had to go to the hospital for the night, I didn’t cry when they showed me how to give myself shots or test my sugars. I didn’t even cry when they explained the scary things that could happen if my blood sugars were too high or too low, but realizing that this disease would affect everything I ate from this point on was more than I could take.
I’m not sure if anything in particular triggered this reaction but I think it was the realization that this disease was not simply, take your medicine and you will be fine. There was so much to learn about things that I had never given any thought to and there was no time to learn it as I needed to know everything right now.
It was as if this disease had finally entered into my daily life. The shots and test strips were new, unknown territory, but food was something that I had a long standing relationship with and this disease had rudely stepped in and changed the whole comfortable dynamic. It was as if this was the first signal that I couldn’t simply hide out in the familiar life I once knew but I had no choice other than to give this disease my full attention.
The tears flowed for a bit longer and then it was time to get to work. It was ok to be mad and sad but that was not going to change this. I had to redirect my energy into taking care of myself. I turned to my mom, my best friend and person who for my entire life seemed to have answers for everything, to come with me on my first trip to the grocery store. If you are a newly diagnosed diabetic, I highly suggest taking someone who can make you laugh grocery shopping with you the first time.
We wandered the aisles shouting carb counts per serving to each other and insulting products that made ridiculous false nutritional claims. We put items in only to take them out when we found a better solution. She helped me avoid the aisles of cereal, cookies, and bakery, that I would soon travel much less often, choosing to focus on the foods that I could eat versus the foods that would now need to be much more limited. In the end we had a cart full of yummy food that proved I would not starve as a diabetic.
The days and weeks that followed came with a fair share of challenges and set backs as well as victories and new routines. I tried my best to remember that I didn’t need to master this new life in a month but my resources were fairly limited and I found myself slowly pulling inward to find strength to deal with this every day. As the months passed I remember realizing that I couldn’t remember the last time I laughed. It sounds horribly tragic now but at the time I was so singularly focused on my diagnosis and the massive amount of numbers swimming through my head every minute of every day that laughter just didn’t seem to have a place. I knew it was happening and yet I could not find the energy to really care or worry about it. I just accepted it and went back to thinking about diabetes.
I remember people telling me that with time this disease would not be the only thing I would think about. I believed them but I knew that I was not at that point. I don’t remember when the laughter came back. It was not like a light switch clicked or a huge weight was instantly lifted, but over time the pressure began to ease, slowly. There were moments that grew to hours when I didn’t have to think, and I could just enjoy and relax. I slowly learned to grant myself some grace when my blood sugars were high or low and I resigned to the fact that this disease has a funny way of changing just when you think you have a handle on a routine.
Looking at life now I am happy to say that there are many nights when I can’t sleep thanks to my husband making me laugh to the point of uncontrollable hiccuping. Writing this post has made me realize how thankful I am for those hiccups and where I am in this journey. At times I forget what those early days were really like and how all consuming this disease was during that time. Today diabetes is still a part of every thought and every action during my day but it has become second nature and now runs in the background rather than being the focus of everything I do.
I look at how my diabetes has become just that, “my diabetes”. When I was first diagnosed everything was being told to me in an effort to educate me about my new life. Now this diagnosis is mine and I can educate my medical team on how I react to being sick, eating pizza, running, swimming, and even having babies. While it is still a constant game of trial and error I know the territory far better. There are mountiains and valleys that I have seen before and I remember the path I took the last time I visited and have a fairly good idea of how to get back to home base.
There is no quick fix to diabetes and there is no quick crash course on living with it. If you are newly diagnosed or you know someone who is I ask you first and foremost to be patient. The weight of the numbers alone swirling in their head at any given moment is unthinkable, let alone the fact that they are still trying to desperately cling to the things that used to be so effortless and “normal”.
There is not much you can do to speed up this process but you can be a constant reminder that it will get better and it will become more routine. You can promise them that the efforts they are making are worth it and that in time their health will thank them. You can help them through the days when they feel like they are failing and remind them that there is no daily report card given and that they can use their frustrations to fuel them to a better tomorrow. And in everything please be patient.
I am in a debt of gratitude to my family and friends who stuck by me when I was crabby because of a blood sugar reading, or sat on a park bench in a the middle of a walk while I ate a snack, or delayed or changed dinner plans because my blood sugars had been high all day. My diabetes tribe may never know what their seemingly small sacrifices or smiles did for me but they were monumental in getting me to the place that I am today. Thank you for helping me to laugh again.