Can anyone help answer my questions?

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TrishD

TrishD

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Relationship to Diabetes
Type 1
My names Trish, I'm 18 years old and I was diagnosed with type 1 Diabetes at the age of 5. I study Fine Art and for my final major project I want to base it on Diabetes not just because it's personal to me but because I want to help spread awareness through my art. I was hoping that people with or without diabetes could help by answering a few questions?
  • What's the hardest part about living with Diabetes or knowing someone with it?
  • What is a positive thing Diabetes has taught you?
  • And how many years have you had it or who do you know that's got it?
Any answers will help a lot towards my project and all information will be used anonymously. Thank you xx
 
I'm amazed I seem to be the first to reply Trish, which I will, after I say good luck with it and I hope you get shedloads of different replies!

Hardest part - knowing that there's no escape, no way to get even just ONE day off. However providing you can (eventually) get your head round that, shrug, accept it. decide that IT will live with you and not vice versa - you can cut yourself SOME slack - providing you pay it the respect it demands otherwise. That makes it a bit easier.

Positive points - a bit of patience!! and quite a lot of logic.

How long - I have had Type 1 for 44 years in August. (Not like I'm counting like ...... LOL)

HTH
 
The hardest part about living with D is having to live with D. There is no let up, no time off for good behaviour, and as far as I can see no cure for a long termer like me (cures are more aimed at youngsters/newly diagnosed).
Positive thing - that I will never let anything get the better of me - if I can take on D and (usually, eventually) win, I can take on anything.
Had it 39 years this year - dont know exact date, so I tend to say November.
 
Hi Trish,
Hardest part is you never stop worrying about them even when they are 32, and people who think they know best can be a PITA
That you find out how another part of your body works and what you can do to help it when it doesn't want to play anymore
My Daughter became Type 1 31 years ago I became type 2 11 years ago

Hope this helps Al
 
Hi Trish
An interesting idea. It would be great to see a photo of what you produce, or let us know when the final exhibition is on and where.

Hardest part: it never stops, there are no holidays from the constant awareness of BG, carbs, exercise, ...

Positive: More realistic. You can't be diabetic and be a perfectionist

How long: T1 for just over eight years. Diagnosed aged 53
 
Hi Trish
  • Hardest part is it's always there 24/7, never going away. You can't forget about it. However, once you accept that - which you have to - then you just get on with it.
  • Positive thing would be I've probably pushed myself harder because of it as I don't want it to be seen as an excuse for not doing or trying something.
  • I'll have had Type 1 exactly 30 years on Saturday. (Forgot the exact date myself although I knew it was early April but thanks to Google could work it out - the Wednesday after Easter April 1986 🙂)
 
Hello Trish

The hardest part is the relentlessness, you can never escape it or have a day off, even on holiday. Also trying to get the right balance between wanting to look after my daughter as well as I possibly can and give her the best chance of a long and healthy life, and being a little too obsessive about it to the point where I hardly think about anything else! You have to have a life 🙄

It's pretty hard to think of anything positive to be honest, I've learnt a lot and I'd like to say that I won't let it beat me but it's not my diabetes, and try explaining that to a 9 year old who is upset because she doesn't want to be different any more :(

My daughter was diagnosed in July 2012 at the age of 6 (and my mum in 1967 at the age of 22, but she looks after herself :D) both type 1
 
Hi Trish
Hardest part. Getting frustrated that I can't always get perfect control because the goalposts keep moving.
Positive. Having realised that stress is very bad for my levels, reeducating myself not to let other people stress me out.
Diagnosed 9 years ago, aged 51.
 
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.

The most positive thing? That my choices matter. If I make the right food and lifestyle choices then I can determine the outcome of my life. That, and the fact that I simply just know more about what's in my food than most people. I find it a little shocking that most people are incapable of even guessing what's in their dinner

As for how long, 17 years, more than half my life.
 
I can't really add anything to what the good people above have said. Good luck to you.
 
The hardest part for me is trying to control the overwhelming fear that complications have brought to my life so that I can still enjoy things without being totally preoccupied, I find that more difficult and time consuming than the 24/7 running of my diabetes. I lived without any sight for one year and although I now have a bit of sight in one eye the fear is hard to keep a lid on some times especially through the night.

Positive is that I'm more philosophical and realisitic about my life and what I can and cannot do which has definitely made me more tolerant.

I've lived with it for 38 years.

Good luck with your project.
 
I was only diagnosed in December last year so am just about 3 months post diagnosis. The hardest part for me at the moment is remembering that I have diabetes! I don't feel any different than I used to for the most part, and often do things such as get in the car & start driving then think, damn I should have tested my blood sugar & have to pull over. Or start eating a meal or reach for a snack & then remember I should take insulin for that... The worst bit is going for a run or to an exercise class and forgetting to either dial down the insulin dose in preparation or take a snack with me. Thankfully I seem to be one of those people who get a slight hike in sugar levels during exercise & it doesn't drop low for a while afterwards so I've managed to get away with forgetting on those odd occasions but I know there could be that "one time when..." and that does worry me.

Positives - free prescriptions? Seriously though, it's not nice to be told you have diabetes but once you know what's wrong and are given tools to manage the condition, it doesn't have to ruin your life completely. Maybe it's just shown me that I'm (mentally) stronger / more resilient than I thought I was!
 
Hello Trish and welcome on board. The hardest thing about it? Blimey how long have you got? I suppose for me ironically its when some well meaning friend or relative spouts up with the inevitable 'YOU NEED TO START LOOKING AFTER YOUSELF'. This of course is even more ironic when after coming out with this pearl of wisdom they take a nice long drag on a cigarette and hammer another nail into their own coffin. Positives hmmmm..............? It has made me strong. I will never let it beat me. I will never let it get the better of me. I will never ever give in to it. I was also fortunate to be diagnosed 32 years ago (this answers your third question). Had I been diagnosed even 50 years ago - a short time in the grand scheme of things then my prospects would be a damned sight dimmer than they were when I was diagnosed. Mine are a damned sight dimmer than somebody diagnosed 10 years ago and so it perpetuates. I am extremely fortunate to have had only minimal retinal damage and no other complications. Some poor unfortunates have not been so lucky. This I suppose is another positive. It is one however that I wish all of us shared - minimal complications 🙂


Very nice to meet you,
Geoff
 
Hardest thing - losing the right to continue to do so many things I'd done before diagnosis eg serve in Territorial Army, drive minibuses etc, and losing the hope of working in Antarctica (although have been a volunteer leader on a youth expedition for South Georgia), research vessels etc, making BSc Marine Biology and experience of arctic fieldwork expeditions, catching fur seals in New Zealand etc virtually useless. 20 years of hard work diabetes management have resulted in no complications, but none of the things I hoped to achieve after age 30 years.
 
The hardest part at the minute is that when something goes wrong (I had emergency bowel surgery in Jan) then your diabetes goes wrong too. I get grumpy when you try hard and still go really high, or low for no reason that you can work out.

Best bit, meeting people on this forum. I am also pleased that it has made me be more healthy in general. I make better food choices and am really happy with my weight.

I was diagnosed 2.5 years ago at 42.

Good luck with your art project, sounds really interesting
 
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