I feel I need to be very careful how I word this as to not offend the many diabetic I talk to on a regular basis, so please bare with me. Hence why at this moment in time I can’t even think how to name this post.
I have the utmost respect for anyone who lives their lives affected by diabetes. It is something anyone outside this bubble we live in cannot comprehend. But to diabetics it is a way of life. Yes sometimes it’s a pain in the arse, but you get on with it.
As a parent of a child with type 1 it feels as if you have diabetes yourself. You live it, every day. I am fascinated (if that’s the right word) by the things I can’t experience. Emily (for some reason i’m not sure of) does not like discussing hypos beyond warning us with the ‘i feel poorly’ line. The hardest part of caring for someone with diabetes is not having the awareness to feel a hypo coming or the unwanted highs. By the time we know it is all about reacting to the situation. And we are relying on Emily letting us know she’s low when she is, not waiting to the end of her favourite programme then telling us. Being 5 she doesn’t always understand the importance of a quick reaction.
This explains the title now I guess, I wish it were me. When there are 2 sides that need to come together to manage diabetes it always feels so much harder than if I were fighting with the dreaded D demons myself. Diabetes is one of the only things I can think of that instead of feeling stronger as a team makes you feel like it does nothing but exploit every weakness that it can find.
This is why we would love a CGM as part of our treatment while we have this flying blind feeling, if we got it wrong we have to wait until she tells us. What if one day we got it too wrong. It’s this worry that has turned me into a number crunching, over protective, over testing insomniac. I do not have the ability to trust the simplest of things. I’ll need to get up and test every night. Even if I know the basal/correction was right, i’ll have Emily popping up in the middle of my dream asking for me to do her finger now. These dreams have been coming more & more frequent.
When I do get to a stage where I’m confident we have her safe overnight something happens to remind us how dangerous D can be. Last night I got up at 3:50am, did a check, all seemed good. BG had dropped slightly from 6.3 @ 00:45 to 5.0 (not unexpected due to a couple of corrections given late evening. So to have Emily hitting me at 4:50am insisting she’s poorly was a surprise, especially as she had never in the past 3+ years woken us to say she was poorly. I checked, 6.9, she wasn’t having it, I tried another finger. Bingo! 2.5.
So again for the next week i’ll be too worried to go to bed and testing every couple of hours, maybe some hourly basal testing too. The level of my obsession with getting it right just intensifies. That’s exactly what diabetes has become, an obsession.
So i’ve said it, I wish it were me, I have always wanted it to be me like any parent would. But as the years have passed it’s not as it once was to take this away from her but now also to save my own sanity. I don’t wish diabetes on me because I feel it is easy to look after yourself, but i feel like I have it already, it’s more a wish to upgrade my living with diabetes so I get all the information in my own body.
She’s a little hero to me, as are all diabetic & parents of those caring for diabetic, I just do not want to let her down when I get it wrong. So i guess the obsession will continue.