When you glance at your monitor before shutting off the reading lamp, and it has you 98 and dropping, even though less than an hour ago your fingerstick was 130 and you haven’t bolused since dinner and you’ve been flat overnight for weeks, you trust it. You drink a juice before turning out the light, and you go to sleep.
When the low alarm wakes you at 12:30 am, and says you’re 65 and that bedtime juice did absolutely nothing, you trust it again and set up a new juice box in the dark, slurp it down and toss the empty off the side of the bed.
When it goes off again at 2 am, claiming you’re 48 and you need more juice, you don’t exactly trust it, but you figure correcting a high later is better than risking a low, and besides you’re too tired to deal with dragging out the meter to double check, so you drink yet another juice.
When sometime in the still pitch black night, your own body wakes you, covered in sweat, heart pounding, limbs shaking, and mind so frozen with terror you can’t even speak, you can only let out a kind of high pitched whine, you trust your husband will hear you, wake up, and ask if you’re OK. And you trust that when you gasp out “More juice!” he grabs another one off the headboard, gets the straw in, and makes sure you drink.
And when you wake to a fingerstick of 61, a bladder the size of a volleyball, and a brain that feels like its been taken out and run over during the night, and send another juice box over the side before you even get up for the toilet, you trust that it was just a fluke, that your guardian angels mechanical, metabolical, metaphysical, and marital will continue to watch out for you, that it will be OK to go to sleep again tonight, and tomorrow night, and the night after that.
But as you struggle to get on with your real life during the day, you have to trust that there are people out there, who understand that this is much more than just an inconvenience, that insulin and meters and monitors are not a cure, that even constant vigilance cannot give more than an illusion of control over a broken body.
And you trust that they’ll keep trying, that despite battles for funding and dead-ends and discouragement, you trust that some one, some where, some time, will come up with the key to unlock this prison, to free us all from this undeserved life sentence.
You trust. You have to.
3 comments:
Val,
The most viscerally painful post I've read in a very long time.
But people need to know, they need to understand.
Thank you for writing this.
Wow. This is such a powerful post, I truly don't know what to say. Besides thank you, and yes, through it all, we need to trust. Sending hugs to you.
This sums up everything perfectly. thank you!
Post a Comment