Last night, Liam’s CGM (only on day 7) was having a lot of issues and he was having to deal with the inherent issues that come with that…finger sticks to keep loop working, going up and down more so needing sugar pills, insulin, etc., At one point he said, and I quote…“When are my sugars ever gonna leave me alone?” He hasn’t been feeling well since Friday and eating makes him sometimes nauseous since then…so he hasn’t wanted to eat SP (sugar pills) or anything else really.
Anyway, just hearing things like that really hurt me to the core because even though I watch his BGs 24/7, 365 days per year and care for him, teach him, etc.,…I’m still not “living” with it as he is and I can only empathize with how frustrating Diabetes is sometimes.
I just tried to encourage him and let him know that this will pass…which it did because we started a brand new sensor session.
@ClaudnDaye I’m 67 and on Liam’s side of the equation. My wife is on yours. My words might not help much, but well intentioned. I’m the one that gets frustrated by the disease; I sometimes curse it, forgetting how well I have it compared to others that have had the same path or experience much worse diseases. She sometimes takes it personally…like my frustration or anger is at her…never the intent. She sometimes gets frustrated trying to help and trying to understand my outburst and I have trouble understanding her not understanding. Know that Liam appreciates what you do and your attempts to help much more than he says and let’s you know, and despite his sometimes questioning the hand life has dealt him, what the future holds…and he probably will until a treatment or cure is at hand…every thing you do to lighten his load and help him approach this disease from a positive viewpoint, despite the problems encountered, can only help him endure, and progress. Im sure others her can word the same thoughts in different and probably better ways. Stay strong!
Have you tried some of the other forms of glucose, eg liquid or gels? If I do tablets, I prefer the “soft chew” version. But sometimes apple or cherry juice works best, when home. Tablets used when not at home.
Tablets can also be crushed and mixed in water, juice, kool-aid, etc… Some are horrible tasting when chewed straight.
I was diagnosed at age 5, in 1965. My mom would sometimes wake me at night, and force orange juice in me due to having a sweaty forehead. Not sure it was accurate at diagnosing low, since morning urine test often showed high.
I think we are all thankful of the modern tools, but it still sux that we have to deal with this.
I’m sure Liam will appreciate and thank you when he is older for all your care and diligence, allowing him to live a long D-complication free life.
Yeah it wasn’t so much about the sp as much as the nausea he was having and didn’t want anything. Lows meant he would need something and just the thought of it frustrated him,
He’s fine now. Just hit me hard what he said in the moment he said it. I just stayed the course and put on a brave strong face as I encouraged him.
Best I could do for him. didn’t answer his question though…
I’ve been sick since Thanksgiving but on the upswing. Friday after Thanksgiving required 60 units (normal daily dose 35 units) just to keep me at about 200. Told my wife it so hard because in normal situations I would just keep throwing insulin at it until it comes down. But you have to be so careful when sick because if you have a lot of insulin on board and then can’t eat cause your sick, you’re making a trip to the ER.
100% agree. I always love, and want, him to be open like that with me. Still hurts as a parent. Not the statement itself, just the helplessness and the knowledge that, without a cure, the only factual answer I could give him is….”Never“.
So I didn’t answer him and, instead, just overlooked the very real question and moved to encouragement and letting him know he’s killing it.
I understand the pain you feel from this. I can see it from both sides.
As a parent, my heart grieves when my kids are going through a tough time or when they get hurt or anything bad happens to them.
And of course I don’t really see D from the same side as you, I am on the other side. I was diagnosed when I was 6, so I understand what he is feeling. I was there.
But here is a very honest and positive answer you can give him.
No, it does not get better every day. But over time it gets easier and better. We learn and we adapt and we get better at it.
So it doesn’t go away. But is it easier for him now than it was 5 years ago? Is it easier now than it was 2 years ago? Will it be easier in a few years than it is now?
And when he finds others with same condition, it usually helps too. If there is a diabetes camp nearby, consider checking it out. Peer support from his age group could be very helpful in person.
I did not meet another T1D until college, and it was daughter of co-worker. ADA meetings were mostly T2D older folks.
Great words, @Eric! Not only for Liam and the rest WITH the disease, but all of the caregivers and even others with similar issues in life! It doesn’t make it easier or better, but it becomes part of our “normal,” no matter how individualized normal may be! I’ll try to remember this the next time I feel like yelling at the “world.”
I second this. Diabetes camp was truly transformative for my son. I think at Liam’s age around me they have day camps and overnight camps with a parent.
Diabetes camps is what I wanted all the money I raise for Tour de Cure. Don’t know if it did but one can hope. I think diabetes camps for kids is one of the best things around for both type 2 and 1 kids. The type 1 kids probably don’t know anyone with it and possibly the type 2 kids (except old people ) finding others like them and having fun is a perfect combination.
I did camps where my parents square danced, and all the kids got to have fun swimming, boating, hiking, etc. (Late 70s ). Nothing special for me, and it was when I only took single injection Lente. (b4 A1Cs).
One cool memory I have from camp was a conversation I had with my camp counselor. It was not a planned speech or any scheduled activity, just random chatting while we were doing something.
The camp was set up to run all summer with various groups of kids coming in for 10 days. All the groups were kids with various conditions. I don’t know the whole list, but things like kids with epilepsy or muscular dystrophy, or stuff like that.
All of the groups of kids were only there during their 10 day time. So I never saw any of the other groups, since I was there during the 10 days for kids with diabetes.
Anyway, the counselor told me that the 10 days for kids with diabetes was so much easier for him as a counselor. Compared to all the other groups of kids, we were like nothing. We really didn’t have any big issue or struggle, and his job was just super easy during the diabetes session. He didn’t really have to help us with anything compared to the other groups!
It was such an impactful thing to hear. Compared to their struggles and challenges, we really have nothing.
I still remember that. He has no idea what a great message that was.
Now that covid is in the rearview for us, post vaccines and boosters, we will be opening up Liam’s world more for sure. It will be parent accompanying activities though because I don’t trust anyone with my children that I don’t thoroughly know and have properly vetted.
Sending you big hugs, @ClaudnDaye. I wish I could do more than that, but I send you solidarity and compassion FWIW.
Liam is such a cool kid. And he feels as frustrated as the rest of us do, I’m sure. I cycle through it even now.
I was not diagnosed until 21 years old…so I do not know the experience of growing up with it…but I will say that my T1D diagnosis (plus a few other life events around the same time) made my priorities and goals crystal clear to me. For me personally, this realization about the reality of mortality (stay with me here) was actually a surprisingly freeing thing that ran counter to the American culture of aging denying and this idea that you can take your time bc you’ll live forever and that we can somehow control everything.
I was shocked into realizing that I cannot control everything…as a really confident 21 year old. And that sobering reality moved me to take more action in my life than I probably would have otherwise.
I look at decisions that my friends have made…and no judgment…but what they’ve done in their own lives is something that I 100% know that I would not want for mine. Many of them continue to live in a way that makes it look like they think that they have forever…and that there are no biological or other factors that need to be considered…and honestly some of them seem a bit lost or they wonder how they ended up where they ended up. Or why things don’t look different for them.
My hope and belief is that coming from an empowering, supportive environment like Liam has…any T1D kid is going to know WAY more about themselves, what they want, and what they’re made of…and it can only make the trajectory of their life that much better. Knowledge can be really painful to gain sometimes…but the results can be astoundingly beautiful.
The fact that you are there to experience his frustration, support him, and absorb it helps free him up so that his trajectory can only continue to climb.
I mean this message with great hope, respect, and admiration.
I’m sorry to be so late to respond to this item. I can identify with Liam. Of course, I am in a very different category. I’ve been a T1D for the last 49 years. This is after a full life of college, military and during a very good married life. The work never ends trying to live a good and satisfactory life. There are many setbacks with problems that have to be solved by a person much older than Laim. On the positive side I have no diabetic complications. Of course, my constant observance sometimes frustrates others. For a person like Laim this is very hard to comprehend and needs to be addressed by others. It is a learning experience by all.
didn’t answer his question though…
) finding others like them and having fun is a perfect combination.
