Note: I think there may be quite a bit of type 1 jargon in here. Apologies for that. Also a normal blood sugar (what we’re aiming for) is 4-8.
I haven’t written that much about type 1 diabetes on here although I have intended to but two of the poems about Type One diabetes in my book (Type One and Trembling Heart) have really resonated with people so I thought I’d talk about it a bit more. Sometimes it feels like dirty laundry that you have to hide away. I think people all have their own stuff to deal with, maybe it’s not that big a deal, and then some days, like today, it punches you in the face. Sometimes it feels too close to write about and some days it feels like a great shadow leaning over our life. My daughter is seven years old and she has lived with type 1 since she was two. Yesterday I took her for a haircut after school. It was snowing, and I had to take her two brothers too but no big deal. The hairdressers is only five minutes from our house. But after pick-up, there are five bags to carry, then we have to wait in the preschool lobby until we get the littlest. In the back of my mind, I am thinking I’m sure she was dropping about 2pm on the app on my phone, but I don’t manage to get the pebble watch out with her numbers on until we pull up outside the house. Quick pit-stop for a hairbrush and I have a look: 7.2⬇⬇. The arrows mean she is dropping quickly. I sigh, give her a biscuit, drive to the hairdressers. While she’s there and the boys are squabbling over who gets to sit where, I recheck her: 4.8. I give her 3 jelly babies to avoid the hypo that’s coming. 15 minutes later, 3.8. Another 3 jelly babies and a drive home and she’s up to 8. She had no correction at 2pm so I have no idea why she dropped so quickly. The cold? Excitement? I get home and make dinner. I weigh it and carb count it. I give her the insulin as now she’s going high. Then it’s bath time so pump is off for half an hour or so, bgs around 11, which I’ll correct at bedtime. My husband does bedtime and doesn’t correct as she is still coming down. We go downstairs to start cooking dinner. I look at the numbers on my phone to make sure she isn’t still dropping and she’s now 15.2 ⬆⬆ WT? Hubby goes to check the cannula is in properly after bath time. He increases her background rate for the next hour. I go up an hour later and she has come down to 13.1. Her sensor graph has stopped working so I leave it as I am not sure if she is rising or falling. I check her bg, again an hour later and it is 20.1. I put in a correction dose and set an alarm to make sure she is coming down. Two hours later, at 1.30 am, I check her bg again. Still no read out from the sensor. 25.2. WT? again. I change the cannula, prime, and reconnect. I put in second correction dose. I set the alarm for an hour later, just to check she’s coming down. I lie there trying to sleep with my hands clenched tightly over my chest. I don’t sleep until the alarm goes off for me to check her again. I persuade my husband to check her as I just want to lie in the warm bed. She has come down to 20 which means at least she’s coming down, at least the cannula is working. I fall asleep. At 6.30am, her bg’s are 12, still a bit high. By the time she gets to breakfast, it is 8.15am. I give her her normal dose and her normal breakfast and within 20 minutes, she is 7.0⬇⬇. I feel sick to my stomach as I know there is some crazy cliff edge in my daughter’s body. If she has breakfast before a certain time, she needs 1 unit to every 11g carbs and after a certain time, she goes to 1 unit for every 25g. That’s less than half the dose. I guess an 8.15am breakfast is too late for 1 to 11. She’s had 3.80 units which for her is a lot. It’s 8.40am and the kids need to get to school despite there being a blizzard outside. My husband says I’ll take the boys up and I say ‘No, can you just stay here?’ The fear of having given my baby girl twice as much insulin as she needs terrifies me. I can feel my armpits prickle with sweat. I walk into the kitchen and burst into tears. And then I give her three jelly babies and a bowl of rice krispies which disappear into a blip on her chart. We ring the school, explain why we are late, and get them out of the door.
It is too much some days and I am too tired and I can’t bear the weight or the responsibility of it. Not today, not every day. And still her hbA1c is too high and still the doctors tell us we need to get better control, but most days it feels like we are all adrift in a tiny rowing boat being tossed about on the waves. We’re longing for firm, dry land under our feet but it will never come, they say.
But sometimes I lie in bed and dream of a day of her eating what she likes, of not having to check her blood sugars all the time, of not worrying about drinking or dating or driving or going on a gap year or going to uni. I dream of her not having to carry the weight of this for her whole life.
But we are in this together, you, me and your Daddy and your brothers. And we love you, and so we long for a cure.
elisabeth pike 