Originally published June 2019
It’s been tricky managing my daughter’s diabetes alongside my own. Here are some things I’ve found particularly challenging:
There’s Only So Much Room Up There
There’s only so much space in my head and I’ve always hated taking notes and logging information. I have lower conscientiousness–in the form of organization skills than I’d like so I have struggled with laziness regarding doing these things.
But when managing my diabetes and my daughter’s, there just isn’t enough that I can reliably commit to memory. One thing that helps is that I’ve synchronized our schedules. We give insulin at the same time and eat at the same time (I homeschool so this works well). I also teach her what I’m doing as I do it and that helps me when I’m trying to keep things straight.
Double the Emotions
My daughter’s blood sugars are stellar but every so often when there’s a high or low and she feels awful, it doesn’t matter if I’m 80, I feel awful, too. And that’s been tricky to cope with because too much feeling awful is a recipe for a disaster. So I’ve been trying to just breathe and not get too caught up in those moments, as they are temporary. There are moments of despair though, like if I’m high and she’s low and our allergies are flaring and I’m trying to figure out if we can afford stuff and if I have the energy to pack more than one Frio with all the supplies and pre-cooked low carb food in a large backpack for a park on a hot day. Sigh.
Who Did I Just Inject?
It can be hard to remember who I just gave an insulin shot to. Especially around dinner time when I’m busy finishing a hot meal and setting the table and timing it all with my husband’s arrival from work. I’ve asked my daughter, “Did I just give you a shot or was that me?” Scary, right? I’ve had to nearly slap myself on some early mornings to make sure I’m fully alert and mindful.
Mindfulness is crucial. I have to make sure I don’t switch our doses. I can’t give her my basal or bolus dose without turning things into a life-threatening situation. So I’ve learned to inject only once I’m fully present. If I am not or if I’m rushing, I stop myself and wait until I can inject safely. If someone is talking to me I ask them to stop. If there is a lot of commotion, I remove ourselves to another room.
The same thing happens with checking blood sugar. “Were you 104 or was that me?” It’s easier to keep track of whose blood sugar is whose now that she checks her own blood sugar, though.
We have different doses, different insulin correction factors, different glucose needs to correct lows, and I have to remember my diabetes is very different from hers right now. I’ll go higher and lower much more easily so I can’t mimic her schedule completely. I have to remember to check more often and still remember to check her at the right times. She still makes some of her own insulin and I probably don’t.
Exhaustion
Sometimes I just get purely exhausted. This is mostly due to the physical hit I take from waking up in the middle of the night for our blood sugars. Now, in most cases like ours, I’d say the other parent should be getting up to check the diabetic child and that way everyone shares the “burden”. In my family’s case, my husband works 12 hour days doing hard, outdoor physical labor in construction with dangerous equipment, sometimes on high scaffolds–my point is that he needs to not be sleepy during the day so that he doesn’t make a critical error and lose life or limb (he’s already lost a tooth and his wedding band and almost lost an eye and a finger). You understand.
Some nights, I get up twice for my daughter and twice for myself and that kind of interruption to sleep is brutal if repeated too often within a week. My lymph nodes swell and I start feeling like I have a cold.
Master Mind I Am Not
Forgive me, the kids are really into Star Wars, lately.
Due to being the diabetes expert and stay-at-home parent, all the diabetes stuff automatically falls on my shoulders. My husband and I have a plan for using the weekends as training times for him because he needs to be able to do and know all I do and know. It’s intimidating for him because he sees that I get intimidated sometimes, and I’m an expert in living with type 1 and this is our dear little girl. But if we get a habit of synchronizing our giving insulin and stuff, him taking over on weekends seems like it can cause me to get out of my routine and screw up my flow, so there is a lot of creative trouble-shooting we’ll have to do to work things out. Mainly, I have to work hard to remember my own diabetes. You’d think this wouldn’t be an issue after so many years, yet here we are.
It’s hard to know exactly what it’s like unless one lives with type 1 and also manages it in someone else. If you’re like me, your mind is constantly analyzing and accounting for various factors like food, illness, stress, exercise, insulin doses, and more and when you’re doing that all the time for two people, it can be overwhelming and one person’s diabetes may suffer as a result. In our case, it’s been mine because that’s what parents do.
The Cost of Two Diabetics
The toughest part of everything is something I won’t go into too much because people paying for one case of type 1 diabetes can already imagine–the cost of two diabetics in one household. I grew up with a type 1 sister and these days, it’s a completely different ballgame to pay for two type 1s. We’re talking tens of thousands of dollars. Geez, makes an incredibly tough medical condition almost pale in comparison.
Pity Me Do Not
I like being understood but please don’t pity me. I’m so glad to have a wonderful family and to know how to keep my daughter and I well-managed. This hard work leads to focus, dignity, and gratitude. And in a blink of an eye she’ll grow up and I’ll only be managing my diabetes, once again. Though If I could magically manage both forever, so she wouldn’t have to, darn it, I would lol.
Due to writing this post, I can see what we need. To adopt a strict write-it-all-down habit where our every detail is responsibly tracked. Forcing out my own stubbornness (I hate logging!) won’t be easy but as is evident from all I’ve shared: necessary, it is!
(Sorry, again.)
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