Diabetes is exhausting. The emotional toll of test, calculate, bolus is incredible. I am lucky. I don’t have diabetes, but diabetes can still bring me down. Because I don’t have diabetes, when it does tend to be too much I can step away, put it on the back burner and regroup before I dive in again. I wish everyone with diabetes had it that easy.
For years I was my son’s external pancreas. It was exhausting. I never slept more than four hours at a time. If I woke up during the night, I tested his blood glucose levels. We had no CGMs. We just had me. It was my job to make sure that he was in range. I was the one to calculate carbs, adjust insulin ratios and log blood glucose readings.
My son tested and learned alongside of me but I carried the bulk of the burden…until he turned 16. At 16, he decided that he could handle it all. He carried the entire burden for the next three years unless he was visiting me. When he was with me, I took over as much as he wanted.
Taking over wasn’t the same as doing it 24/7. That being said, being an external pancreas also wasn’t the same as being the one to experience the highs, lows and pokes with needles multiple times per day. Not being able to “fix it” or take it away could (can) bring me down as much as the pressure of daily diabetes care.
I still wish that I could take the pain away. I wish that my son would know a different life. There isn’t a day that I don’t ache for the families and other people living with diabetes knowing that they can never stop testing or injecting. Their very lives depended on it.
As I brush away those feelings, a new sadness often creeps in and diabetes can bring me down again. The new sadness often comes from my advocacy efforts.
Ever since my son’s diagnosis, I have worked very hard in various advocacy arenas. I have worked with grassroots groups, individuals and large organizations to see changes for children and adults living with type 1 diabetes. This means that I also am exposed to the worst in the diabetes world. People come to me when they are struggling and don’t know where else to turn.
Don’t get me wrong, I love being that shoulder. I love being able to give back to them in the same way that others were there for me. The problem for me arises when we can’t see a perfect resolution. I ache when someone comes to me with a situation that I know there is just no current solution for. I want to fix it desperately but when I can’t? Diabetes can bring me down.
At some points that sadness because I can’t fix it has been overwhelming. Those are the times that I have had to step back a bit. I have had to reduce the time I spent on issues and allow myself to step back from the advocacy arena. During these times, I remind myself that there are many others out there who can handle it just as well and I regroup.
I will admit, sometimes diabetes has brought me down so far that I wondered if I would come back. Had my advocacy usefulness past? Was I too cynical? I can’t really answer that but I can say that I recharge and am pulled back into the ring by families and individuals who continue to reach out looking to me for help.
I don’t have diabetes. Diabetes can still bring me down but it never keeps me down. Each day I wake ready to work a little harder. Each day I will share what has worked for us and hope to inspire and assist others living with diabetes. I will continue to work with individuals and groups to create better care for people with diabetes regardless of education or income level. Diabetes can bring me down but it will not win. My battle won’t end until a cure is found.