The Worst Part...

[MichaelWM]

I'm starting to get a much better idea about type 1 diabetes and my expectations for the future, with much help from this forum, so thank you.

I'm wondering what the absolute worst part of having diabetes is?

Is it the high levels of insulin, the hypos, having to inject yourself so much?

I look forward to hearing some enlightening answers.

Cheers.

 

[azure]

Obviously, hypos are scary, but for me the worst part isn't insulin or having to have injections. I'd happily have 10 injections a day if that was it.

But it's not - diabetes requires thinking about to varying extents all day every day, and that's wearing. Never a day off.

Also, the fear of complications can't ever be far from a person's mind.

 

[MH2010]

For me, the worst part is the drs, dietitians and even some of the consultants thinking they know better than me.

My HbA1C is 40, they automatically think I must hypo all the time and I MUST get it higher for next time. They dont think 'Well done Maria, Your diabetes must be very well controlled'.

They are forever seeing the downside of things.

 

[TorqPenderloin]

I don't mind waking up at 2am for a low, 10 injections a day, gluing my dexcom sensor back onto my skin, or being required to watch everything I eat.

It's pretty petty, but the worst thing about it for me is having to tote all my s*** around everywhere. It's fine when I'm at work because I have my briefcase, or when I'm out with my girlfriend because I keep my stuff in her purse, but when I'm out with my friends I hate having to carry around an insulin pen, test strips and my meter.

 

[Nicola M]

The worst part for me is the constant thought of not knowing what each day is going to be like. Each day for a diabetic is completely different and it can be at times frustrating. It always feels like I can't plan ahead because on the day something could put a halt to the plans.

 

[tim2000s]

There are two things for me. The thing that gets my goat the most is what I blogged about this morning. That (if you can't tell) does my head in.

The second is matched with @TorqPenderloin. The amount of stuff I need to lug. I'm not really a manbag kind of guy so my pockets are always full.

 

[mrspuddleduck]

I admit it's petty but its the testing every two hours when driving that drives me crazy! I live in a rural area and am constantly in and out of the car, sometimes several times a day. The number of times I've turned the engine on then had to turn it off again cos I've forgotten my 2 hours are up and I've got to test again

 

[dancer]

Over the decades, my worst things have changed. At the moment, hypos are the most worrying. Having a sensor, along with my pump, has been a great help.

One thing that has always upset me is my ever increasing distrust of doctors. This started 5 weeks after diagnosis when a registrar greeted me with, "You're cheating in your diet." when I was doing everything by the book. Several similar incidents have occurred over the years, so now I always ask for my consultant. (@tim2000s you have all my sympathy!)

 

[Natalie1974]

I think night time hypos are the worst part...although admittedly I don't get them too often these days. Would be lovely to think I could open my eyes just long enough to swallow a couple of jelly babies...but it just doesn't work like that...I usually end up wide awake and totally unable to get back to sleep...so am grumpy and good for nothing the next day.

 

[noblehead]

Agree with all the above, but one of the worst parts for me is not having the opportunity to be spontaneous without some pre-planning.

 

[Garr]

Nothing about being a T1D really bothers me, the injections, testing, weighing out food, working out the insulin, timing or splitting boluses, carrying all the gear around, keeping records of everything and all the self discipline required to keep your levels under control. If anything it's made me healthier (bit of an oxymoron) and made me keep my fitness levels up. But losing my job and career because of numpty occupational health doctors who haven't got a scoobies about T1 kinda sucked!

 

[catapillar]

I agree with @azure , for me it the no day off thing. I don't care about injections or testing, there are ways around the administrative burden of repeat prescriptions, I'm intensely aggravated by poor medical care - last time I saw my consultant she told me I was at high risk of dead in bed syndrome but I couldn't have a cgm & she wanted to follow up in 3 months, that was in August - but it's the constantly, every single day, 24/7 having to be aware of what strange thing my blood sugar might be up to that is the worst thing.

O yeah & having anthropomorphised my blood sugar as if it actually has an independent personality is a bit worrying, as it suggests I might be a bit mad, as does shouting "I know! What more do you want from me?" At your cgm!

 

[John_H]

Yep, lots of replies resonate with me. At the moment, there are a couple of things that bother me most. First is peripheral neuropathy. I have pins and needles in my toes, which comes and goes. Where’s that going? Second is, what have I passed on to my kids? Apart from these, Type 1 diabetes is a pain in the a***, which "bothers" me, on average, a couple of hours a week, the rest of the time I keep busy, control my BG levels and enjoy life. Tonight I'm going out for curry and beers with friends. Yes, beers - I may have more than one!

 

[pinewood]

2 things for me, both of which have been mentioned already:

1) the "never a day off" - constantly worrying about where my levels are at and where they are heading, planning and pre-planning my days and thinking ahead to correctly dose insulin. It's so tiring having it at the front of the mind literally 24/7/365. Normal life gives us enough things to worry about without T1D!

2) the carrying around of all the paraphernalia - it sounds silly but it's another thing to think about every single time I leave home - insulin pen, needles, Libre, glucose tabs...and I also don't want to have a "man bag" so usually resort to filling my pockets.

It's funny how, when first diagnosed it was the injections that I thought would be the worst. As others have said, that's probably the easiest part!

 

[Diakat]

Five to drive. I spend ages tying to keep sugars low, then have to stuff my face to drive. I am sick of spending 40 mins in the car park after the gym trying to get my sugars to just over five and then ending up at over 8 an hour later because my body seems to take half an hour to register a rise not 15mins like everyone tells me!
That's the petty one. Long term yes, the never having a break from it.

 

[Dave...]

I don't mind waking up at 2am for a low, 10 injections a day, gluing my dexcom sensor back onto my skin, or being required to watch everything I eat.

It's pretty petty, but the worst thing about it for me is having to tote all my s*** around everywhere. It's fine when I'm at work because I have my briefcase, or when I'm out with my girlfriend because I keep my stuff in her purse, but when I'm out with my friends I hate having to carry around an insulin pen, test strips and my meter.

If only I had a £1 for every time I've set off out of the house and then had to go back in for a) meter, b) jelly babies... c) insulin etc...

 

[Robbins]

The worst part is the worry that my Son may now get it.