Ten years on

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ardronmason

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Relationship to Diabetes
Type 1
Hi, I'm just wondering if people get fed up, I'm ten years on. Doing OK. My bloods are OK x I know life could be worse, and I should be grateful. And I am most of the time. But now and again, I get sick of the numbers and the maths. Then I feel bad for feeling that way because im still here. People have worse conditions x
 
I'm just wondering if people get fed up
Of course, yes. The mental burden of it all is (or should be) well recognised, and (at least in theory) there should be support available for that. And for Time in Range, I think it's generally recognised that 70% is fine; much more than that may well require too much effort for the long term.
 
Thank you for your reply. I am very lucky, I have all the kit. A pump and now a sensor that helps me keep within range. I am so grateful for the equipment. I still slip, and I find that unless you are a t1 yourself, it will always be hard to truly understand. I find the hardest is from my family, they care and love me and try to understand but don't really get it!
 
Hi, I'm just wondering if people get fed up, I'm ten years on. Doing OK. My bloods are OK x I know life could be worse, and I should be grateful. And I am most of the time. But now and again, I get sick of the numbers and the maths. Then I feel bad for feeling that way because im still here. People have worse conditions x
Hmmm, well? The recent tech I have. You got no idea what I was using back in the day. This stuff is “Star Trek.”

But. A big “but.” It’s all feeling like I’m attached to a “ Tamagotchi.”
 
Please don't get me wrong. I can imagine. Massive needles, feeding the insulin.

Are you on a pump too
 
Hmmm, well? The recent tech I have. You got no idea what I was using back in the day. This stuff is “Star Trek.”
But. A big “but.” It’s all feeling like I’m attached to a “ Tamagotchi.”

I just think it's really Star Trek stuff now.
The Voyage home, when Bones gave the women in dialysis a tablet, and talked about the dark ages.
We are so moving into the light.
 
Please don't get me wrong. I can imagine. Massive needles, feeding the insulin.

Are you on a pump too

Me?
No. MDI. Yep I do remember glass syringes as a kid. The sensors are pretty much what I’m on about.

“Feeding the insulin.” Thanks. It did feel like I was “blackmailed” by the drug back then.
 
I just think it's really Star Trek stuff now.
The Voyage home, when Bones gave the women in dialysis a tablet, and talked about the dark ages.
We are so moving into the light.

We are promised a “cure” in ten & the light at the end of tunnel seems to get longer?
 
It does, we are dealt a card I suppose. We just have to get on with it! Do you find it difficult sometimes?
 
It does, we are dealt a card I suppose. We just have to get on with it! Do you find it difficult sometimes?
Sorry, me again?
Interesting question. There have been a couple of times in my life where I’ve scuppered myself for the sheer hell of it.
But then, clawed my way back from the mess of my own making.

I guess sometimes I just want to make life more interesting than just being a T1.
 
I don't know that I do it on purpose, but I definitely feel sometimes "sod it" I'm damned if I do and I'm damned I'd don't" so who cares!
 
I don't know that I do it on purpose, but I definitely feel sometimes "sod it" I'm damned if I do and I'm damned I'd don't" so who cares!

Well having a dysfunctional pancreas isn’t like waiting for a broken leg to heal. https://www.nhs.uk/conditions/broken-leg/

But I have seen a guy with tha leg cast choreograph his entree for a dance competition once. (Long story.)
Inspiring in itself. I kind of forgot he was dragging this thing about?

There are sometimes people who do care. & get hurt. Be mindful you don’t create more work for yourself in the aftermath of a snap decision?
 
I find that unless you are a t1 yourself, it will always be hard to truly understand. I find the hardest is from my family, they care and love me and try to understand but don't really get it!
Yes indeed. Very few people who don't have T1 have any idea how hard it is.

I was only diagnosed 9 months ago, had the Libre 2 within 10 days, yes I know 'in the olden days we had to catch and kill our own insulin' etc. ...

But even with Libre, the burden is overwhelming. Every hour of every day for the rest of our lives; life sentence with no time off for good behaviour.

And, with the greatest respect to Bruce, the mental burden is not nearly well-recognised enough, and there is not nearly enough support for it.

As for a cure: pff. I've seen nothing remotely resembling progress toward a cure.

Better treatments? Hybrid closed-loop systems hugely reduce the burden, but it doesn't look as though the NHS is going to make HCL available to those of us who suffer psychologically rather than physically. It looks as though the NICE recommendations will be: If you're happy as Larry but your HbA1c is lousy, you should be offered HCL. If you're really suffering from the mental burden but your HbA1c ok, tough.

Will there be anything better than HCL? From what I've read, that whole approach has technical limits. You can't stick a glucose monitor in someone's blood or stick an insulin pump in someone's blood-- safety problems; but, if your glucose monitor is in your interstitial fluid and your insulin pump is in your subcutaneous tissue, the delays are such that you'll never get past 'hybrid'. You'll always have to 'pre-announce' meals and exercise, and you'll always have to be standing ready to intervene because the system can't always react fast enough.

There is one area of research I like the look of-- 'glucose-responsive insulin'. (See for example https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8158166/ .)

Scientists studying the insulin molecule noticed that, as it approaches the insulin receptor on a cell, in order to do its job, the insulin molecule slightly changes its shape: kind of slightly opening its 'arms' in order to latch onto the receptor.

So somebody had a brilliant idea: What if we could splice into the insulin molecule something like handcuffs? (The boffins prefer to call it a 'switch' or 'hinge'.) A molecule that would 'lock' when glucose concentrations in the blood were below a certain level, and would 'unlock' when BG was above a certain level?

If this could be done, you could just inject a shedload of this stuff once a day-- or maybe even have some sort of implant-- because it would only become active when and for as much as you needed it, and would immediately be deactivated as soon as you didn't need it.

I love this idea; I love it when someone comes at a problem from a completely different angle. Oh, and here are some pretty pictures of the insulin molecule! https://pdb101.rcsb.org/motm/194 .

Anyway, in the meantime, what can we do? ... Just try to keep going; try to keep from going blind and getting our feet chopped off while also staying sane, or thereabouts. ; ) And staying sane or thereabouts does require ventilating when we need to, so don't ever feel bad about that! Very best wishes.
 
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