Back to it. Back to that new normal life…where diabetes isn’t in it 24/7. It seems strange but this past week with my son was also a bit of an awakening regarding daily life with type one diabetes.
In the past six months, I have not had to get up in the middle of the night to check blood glucose levels, but I still wake up. I haven’t had to worry about site changes but I still am in charge of ordering supplies. My role has changed. It is still taking some getting used to.
My son was diagnosed with Type 1 diabetes over 14 years ago. He lived with me the bulk of that time. In September of 2013, he chose to move to finish high school with his lifelong friends. It killed me inside but it was a choice that he had to make.
I was thrown back into daily life with type one diabetes last week and it wasn’t pretty! It gave me a new respect for my son and for all people with diabetes. It also brought new pain to my heart. I wished that others could have seen what I saw and experienced what my son experienced. Perhaps if more people did, then more doctors, insurance companies and politicians would fully get it. Maybe then more research projects would be funded and there would be a greater understanding and drive for a cure.
He arrived high
My son arrived here on a Monday after a 10 hour day of driving. He was high. I asked him what was up. He explained. “I should have set an increased basal rate to cover all of that inactivity driving in the truck. I ate at a fast-food restaurant but the meal I chose wasn’t too high in fat. I may also need a site change.”
We checked the nutritional analysis of the meal he had eaten. It was a lot higher in fat than he had thought. We discussed extending boluses to cover those high-fat meals. We talked formulas and I hoped that he might remember the concept the next time he ate out.
His blood sugar was still high during the evening
Because of those small oversights, he was high for the rest of the evening. He went through gallons of water and found it hard to socialize because he was spending so much time in the washroom.
His visit continued this way. There were highs, but there were logical reasons for them. There were mistakes made. He is only human and not a pancreas. Together we worked to fix them. There were injections and new sites. Sites fell out and got kinked. There were replacement sites and more injections to cover the missed insulin and bring him down. There was more water. He spent more time in the washroom.
We discussed diabetes care strategies
I was exhausted. He took it all in stride. We discussed strategies. I suggested changing sites a little sooner when he was having highs. He told me that when he got too high he felt a burning in his legs and after a bit he would smell a strange smell. He said it was like his brain was frying because he was so high and he could smell it happening. My heart broke.
After days of “stuff happening”…a bad site, a poor carbohydrate calculation, a bolus delivered wrong, we finally saw him in range for longer than an hour. He was able to sleep through the night without a trip to the washroom every half an hour. He was able to put down the water bottle and enjoy a casual glass of diet Dr. Pepper. The battle was over and he had won. The war would continue another day, however.
Diabetes went home with him
As he got on the plane for his trip home, my hands-on role ended. I was no longer in the trenches dealing with daily life with type one diabetes with him. He was on his own until he had another break and came to visit. Alone he would deal with the possibility that air pressure of the plane would impact the insulin delivery on his pump.
How stressful must this be for a person living with diabetes?
My son told me how his doctor lectures him when he goes to his appointments (although I am guessing that the bulk of his lectures are just). He stated that he the CDE he was sent to was more concerned with reading him documents than teaching him something useful. He is just beginning his journey of learning to be his own advocate.
As much as I complain about his lack of self-care. Each time we talk, I am amazed at how much he does know about his own care. Some of the information he has heard from my lecturing and teaching, as well as the things he has learned at CWD conferences has sunk in. He is a teen and may not always do what he is supposed to but he does have the knowledge when he chooses to apply.
It will be up to him to apply the knowledge. He will have to show his medical team that he is very educated in his care. My son will have to decide to take care of his body. It is a huge challenge. As people who do not have diabetes, it can be easy for us to judge and demand better. It only makes sense to take care of you. You will feel better. It’s not always that easy. Stuff happens.
This week managing daily life with diabetes was exhausting
This week was exhausting and I didn’t have the physical toll on my body that my son did. I was the coach on the sidelines, offering help when I could. Suggestions were made and I took over care when I could. I carried a small amount of the burden but he carried the bulk of the weight of daily life with type one diabetes.
I could see him sitting in a meeting with his diabetes team and having them see this past week’s readings. There would be questions. Would he feel defensive? I would have. Would he feel judged? I would have. Did he do his best? Yes. Do the numbers look like it? No…and yes. Readings were high, but then we had a victory and things came down…before the next stumble and up they went. Should we have known better? Yes…and no. Yes, he knows to increase his basal when traveling but no he didn’t know the carb counts for some of the restaurant foods. Even with calorie counting software, errors were made. How could we have known that the site that went into his leg would bend—twice?
There are so many factors going into managing diabetes. Even for those of us who have lived beside someone for 14 years, we can’t fully understand all of them.
I hate that I can’t fix it
As a parent it is torture. I want to fix this. I want to take all of the highs and lows of daily life with diabetes away from him. He doesn’t ask me to. He knows that I will do my best. When he stumbles or appears not to take care of himself the way that I would like to see, I get upset and even angry. I understand the toll that it can take on his body. I know the toll that a causal attitude will take on him long term. He has the knowledge to care for himself and I pray he will choose to use it sooner rather than later. I don’t always remember the struggle to balance being a teen boy and being a person with diabetes, however. It has to be hard.
I won’t quit demanding the best from him. I won’t be able to stop being disappointed when I don’t see adequate checking of his blood. This week has been a learning week, however. It has given me a new respect for all that my son deals with when Mom isn’t there to carry some of the burden. It has reminded me of how much diabetes sucks and how despite the fact that a lot has changed in 14 years, we still have a long way to go.