What's the hardest part of being a PWD?

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Discombobdiabetic

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Type 1
Hi All,
I'm appearing on local TV tomorrow night as part of a panel show on local news. I'm going to be talking about Diabetes (I'm a T1) and one of the questions I'm due to be asked is "what's the hardest part about having Diabetes?" It's not a question I've asked myself before, I could talk for days on the subject though. But I thought I'd open it up to the community?
 
Good luck tomorrow. I am type 2 and reasonably new, but I think the hardest part is one size does not fit all. People get to have diabetes in different ways, and have lots of different paths to follow, but that's hard to get around people's head. Hope that makes sense
 
The relentlessness of it, the fact that you can never ever have a day off, even on holiday. Little wonder we all get burnout sometimes...:(
 
Good luck for tomorrow.
People who don't have a clue , except that they've heard or read something somewhere ,telling me what I should n shouldn't eat or even asking, should you be eating that. I'm sorry to say they get short shrift from me.
 
As a type 2 for me it's the guilt I feel every time I eat something with too many carbs.
Hope all goes well tomorrow.
 
Ljc said:
Good luck for tomorrow.
People who don't have a clue , except that they've heard or read something somewhere ,telling me what I should n shouldn't eat or even asking, should you be eating that. I'm sorry to say they get short shrift from me.
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I agree with Ljc, people without diabetes who think they know it all. I went to great and patient lengths to explain to someone exactly how I could manage my insulin so I could have an occasional piece of cake it I wanted it. Their patronising reply? 'Well, that's what you've convinced yourself anyway'
 
Here you go:

https://forum.diabetes.org.uk/boards/threads/can-anyone-help-answer-my-questions.58395/#post-588380

The hardest part is, as most people say, knowing it's there 24/7. But it's not just 'knowing it's there'. It's the constant internal monologue that never switches off. My brain with diabetes is something a bit like this:

How's my blood sugar doing?
Really gotta get this this project finished. What time is it? 10.30? Right, so I had some Novorapid about 2 hours ago and
How's my blood sugar doing?
it was a moderately carby breakfast I had and WAIT I need to call Andy and sort out the photography for the next article
How's my blood sugar doing?
so I've got about another hour and half left and was it 25g of carbs? What was the GI again
How's my blood sugar doing?
I think those carbs are probably done now and OO Facebook what are my
How's my blood sugar doing?
friends up to? They want to
How's my blood sugar doing?
go for dinner on Tuesday? Oh what, not Pizza Expr-
How's my blood sugar doing?
-ess and 1.5 left on my Novorapid. Really? Pizza's a pain and I don't want
How's my blood sugar doing?
to be the weirdo who orders
How's my blood sugar doing?
salad.
How's my blood sugar doing?
Better test I guess
How's my blood sugar doing?
How's my blood sugar doing?
How's my blood sugar doing?
It's 10.32
How's my blood sugar doing?

Well, that's my brain, anyway.
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One of the hardest things for me is the knowledge that I have a chronic life threatening disease yet feel fine all the time.

The cure, just remembering how I felt in the year before DX
 
Robin said:
I agree with Ljc, people without diabetes who think they know it all. I went to great and patient lengths to explain to someone exactly how I could manage my insulin so I could have an occasional piece of cake it I wanted it. Their patronising reply? 'Well, that's what you've convinced yourself anyway'
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How on earth did you manage to stop yourself throttling them
 
Hi Ljc , what is CKD
 
Diabetes is easy other people are hard work, My doc's has starting arguing about testing strips, I should be testing once a week.. tsh what planet are they on?

My relatives waffle on about sweeteners, this that and the other.

The doctors think I'm type 2 because I'm a fatty bum-bum, but won't test, even though I'm pretty sensitive to insulin and they want me on oral meds but they do bugger all for me other than make me vomit.

My Dsn thinks I'm type 1, but my surgery nurse thinks I'm type 2.

Yes so far in the 2 months I've had diabetes I must say that other people have been the hardest to cope with, I just dread to think what other people will do next because I can hazard a guess, that they will at least make diabetes hard work or cause me harm.
 
Oatmeal Raisin Cookies..... My wife used to cook up a whole batch (even though she may have only 1) but I just couldn't resist them & would eat them all even though I knew I'd have wicked heartburn in the night!!!
 
Martin Canty said:
Oatmeal Raisin Cookies..... My wife used to cook up a whole batch (even though she may have only 1) but I just couldn't resist them & would eat them all even though I knew I'd have wicked heartburn in the night!!!
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Could you not give some away. I made a batch of cherry scones tonight, first time ever- made them small, gave some to my neighbours and hope to freeze some. That's the master plan.....
 
Carolg said:
Could you not give some away
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Oh, my wife's recipe was so good!!! The dogs just loved them (sans the raisins) as well.
 
Like Deus said it's the constant thought of BG levels in your head.
 
Ljc said:
How on earth did you manage to stop yourself throttling them
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With difficulty. Actually it was my cousin, so thought it might not go down too well in the family. I just had a good moan to my understanding sister afterwards.
 
palmoff said:
Diabetes is easy other people are hard work
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That would be the hardest thing for me too - and for me too it's not the non-diabetic person in the street who just doesn't happen to know anything about diabetes, it's the medical professionals
who know nothing about diabetes but think they do just because they're medical professionals, or
who know something about diabetes but nothing about how it effects me, or
who know a lot about diabetes but nothing about how it interacts with my other illnesses,
and who consequently give me bad advice, don't believe things I tell them, and are generally patronising.
 
The people who should know about diabetes & know nothing! Ordinary people who have know exposure to diabetes i can forgive, I was one of those lucky people once. Medical professionals and other people with diabetes who have unacceptably low levels of knowledge or high levels of misinformation are extremely irritating!
 
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