Insulin Pump Vacation or Permanent Diabetes Vacation?
Does my son really want a break from the pump or is he just sick of having diabetes
Josh said he wants to go on a pump vacation. Of course that means going back on lantus and novolog – a minimum of 4 shots a day. In theory our medical team has approved pump breaks and of course I’ll consult with them before making such a big treatment change.
But before I signed off on my 8 year old’s request I wanted to make sure he knew what the change would mean. The Smart Pen that Mary Kate so eloquently wrote about in June 2006 hasn’t been invented yet so we’ll have to struggle through injections without the handy pump algorithm. There goes my favorite insulin on board feature which prevents us from stacking the doses. We’ll just go back to our old way with designated meal and snack times and minimal to no snacks in between. I reminded Josh what it was like to take the dinner shot and then realize he wanted another roll or scoop of applesauce but instead had to settle for more salad or carrot sticks or at best a cheese stick. No flexibility there. Unless of course he wants another shot.
Oh yes, if his blood sugar is high afterschool, we’ll either have to dash home to do a shot or I’ll keep the insulin pen in my purse. And if he’s headed to a play date and his blood sugar is 250, he’ll have to stop by our house first so he can get a correction shot. Inconvenient, huh? So I went on and on with my list, but then I really looked into his eyes.
As the conversation progressed, I slowed down and listened, really listened. Then I asked a very direct question that I should have asked initially. Are you tired of the pump or are you tired of having diabetes? His brown eyes filled with tears and so did mine when he answered, “tired of having the diabetes”. Of course he’s tired of having the diabetes! There is no vacation from it! It’s a pain in the *** (my term, not his . . . yet). But acknowledging it, and then really talking about it seemed to alleviate his wish for a pump break.
Sometimes diabetes is a bigger monkey on his back than other times. Sometimes it feels like a real gorilla. I can’t make the diabetes go away but I can help give him tools to deal with diabetes burnout. Kids and parents get burned out from diabetes, but fortunately in our family my son, husband and I haven’t all been burned out at the same time. I hope Josh always has a strong enough diabetes team to keep the burn out at bay.
Tips to Deal with Diabetes Burnout
1) Accept that some months will be better than others. That sometimes you’ll be able to maintain tight control with relative ease, and well, sometimes life gets in the way and you may not.
2) Share the responsibility between parents. Take some of the responsibility off the child when he or she is feeling frustrated or burned out.
3) Get help with burnout from your medical team, diabetes team, family, etc.
4) Strive for “good enough” numbers, not perfection. Blood sugar readings are just data – don’t label them “good” and “bad”
5) Step back and take a longer term view of the numbers
6) Explore where the burnout is coming from – sick of shots, or counting carbs, tired of restrictions, tired of site changes or being attached to the pump. Can you pinpoint an area that feels overwhelming and make a change in just that area?
The following have some good strategies about dealing with burnout. Read them before you reach the point of burnout so they’ll already be in your “bag of tricks” to deal with diabetes. Again I recommend Betty Brackenridge and Richard Rubin’s Sweet Kids; especially their chapter entitled “An Action Plan for Avoiding Diabetes Overwhelmus Mom-and-Popus”. I think I was ready for Josh’s frustration because I had read Dave Mendosa’s December 2005 Overcoming Burnout blog and it stuck with me. If you haven’t read it or if it’s been awhile I recommend reading it again.