It feels like not setting your 1am alarm that could be the difference between waking with a blood sugar level of 5 or 10.
It feels like choosing to shell out money on ham and cheese croissants, tuna sushi, Kit Kat Chunky bars and Jesters chips instead of bringing your lunch from home.
It feels like failing to wash your grubby hands before the prick of a finger, knowing that the number will be a shit one regardless.
It feels like exhaling loudly, and sighing out of exhaustion from the mundane diabetes tasks that make life feel that much harder.
It feels like telling your meter to eff off when it screams ‘low batteries’ at you.
It feels like telling your meter to eff off a little louder when it still screams ‘low batteries’ at you.
It feels like failure after discovering your third infusion site this week that hasn’t lasted it’s full three day life.
It feels like telling your insulin pump to shut the hell up when it begins blaring that there are less than 10 units of insulin left in the cartridge at the dinner table.
It feels like trying to manually poke your finger with a lancet after you’ve left your lancing device at home.
It feels like not being bothered to weigh and carb count your dinner tonight, instead opting for a good old fashioned guesstimate dose of insulin.
It feels like checking your blood sugar, and not really caring that your levels are higher than what you’d normally accept.
It feels like anger when your new FreeStyle Libre sensor starts bleeding horribly after application, when you had put it on hoping for somewhat of a break.
It feels like frantically power walking home with a plummeting blood sugar, because you forgot to bring your glucose tablets with you on your walk.
It feels like crawling out of bed with a heavy head, still feeling exhausted after a solid 10 hours rest.
It feels like silent pleas for the coffee machine not to get choked up, because you simply can’t handle yet another failure this early in the morning.
It feels like…a bout of diabetes burnout.
(and a whole heap of bad luck).
My son has T1D. He is 11 years old, and although he takes things in his stride pretty well, he does get so frustrated sometimes. I so get it.
Another one to add to the list: Feel like saying eff off to the well-meaning friend who says how hard it must be caring for a child with “unstable” diabetes. As though T1D is ever truly stable. It just is, and every day is different. Not unstable.
it feels like the pain neuropathy waking one up at 3 AM. no doubt with your damn pump blaring and your wife shaking you. Yeah now that feels like.
It feels like living with type1 diabetes. It does not get any better after living with it for decades as I have done.
This resonated a lot with me! I’m nearly 23 and have been Type 1 for nearly 21 years; I dealt with things pretty well in my childhood, considering other things that were going on at the time. I’ve never known a time where I haven’t been diabetic, so I just got on with things without really thinking much about them.
In my early teens everything came crashing down together and I developed an eating disorder and was later diagnosed with clinical depression. I didn’t think they were any relation to T1D at the time, but now I realise it played a massive part, and I actually think my eating disorder served as a distraction from the diabetes. I was struggling massively; I put myself into hospital with DKA and the startings of brain swelling after not taking my insulin for 3 days, at my worst point I was binging and purging up to 9 times a day, I was self harming, I was deliberately misusing my insulin to avoid having hypos and needing to consume extra calories, I was drinking a lot, and I was maybe doing 1 glucose test every 3 days – at one point I think I went nearly 10 days without testing. I’m actually amazed I’m even alive still, let alone without any complications (that I know of yet).
I was receiving help for my mental health conditions and would say I’ve been fully recovered (or as close to as is possible) for a couple of years, and looking back I can see that between the ages of 15 and 21, I was also in a period of huge diabetes burnout. I didn’t even think it was possible to be burnt out for that long, and at the time I just told myself I was lazy, but that’s not the case! By the time things got better and I started taking care of my diabetes again, I’d spent so long out of it that I felt I knew nothing and had no idea to start, which kind of triggered another mini wave of burnout in itself, but the online community (and my mum who’s also T1D) have been amazing in helping me realise we’re all in the same boat and none of us are perfect.
T1D is f***ing relentless, there’s no let up from it, we constantly see it negatively (and incorrectly) portrayed in the media and are reminded of the possible complications, and I think many of us probably feel like we’re staring down the barrel of a vastly shortened lifespan. One of the hardest things for me was feeling like I was alone in feeling that way.
Anyway, sorry for rambling, but I’ve just started blogging myself, and am really enjoying reading your posts, so thank you!
No need to apologise! Your story is really insightful to read, especially as I am more of a d-baby. Having peers who just get it is such an invaluable thing to have, and my outlook is far better for it. Knowing there are others going through the same things as me helps me to feel less isolated and be kinder to myself on tough days. Thanks for reading and for your comment, Amy.