What is the no 1 thing that frustrates you about living with type 1 diabetes?

[EllieM]

I hate the having to preplan so many things. Things my hubby can just go out and do, like deciding to take a swim or go off walking somewhere.

Glucose (check, double packet if long walk)
Insulin pen (check, oh does it still have insulin left?)
Phone (check, oh is the charge OK?)

And if my decom is acting up, glucometer bag.

I can do it fast, but it means I always need pockets or a bag....

 

[MarkHaZ123]

I hate everything at the moment with it. Bee T1 for 3-4 years now. You just can't have a day off from it.

Check bloods. Take insulin. Check bloods. Take insulin for dinner. Check bloods again and again. Insulin for tea and any snacks then insulin before bed.

I'm just fed up that bloods can just change so quickly. Today I had a big hypo that lasted ages and hours later still feel bad from it. I was just sat watching the footy and felt stressed. Within minutes I was shaking.

I hate having to go to appointments. Having feet and eyes checked.

I hate when I'm on a day session drinking and you've got to eat or you'll crash at some point.

I hate when you forget insulin or take less and you get a bit of blurred vision.


As you can see I hate alot of it. Just been so fed up of it more in the last week as I'm stressed about other things so it's a knock on effect.

 

[Marie 2]

@MarkHaZ123 It's when those other things are going on that it can sometimes be the hardest. Because besides what's happening you still have to deal with everything type 1 and it feels very unfair. Hugs.

 

[david4503]

I hate everything at the moment with it. Bee T1 for 3-4 years now. You just can't have a day off from it.

The “I hate everything” thing sounds pretty normal after three or four years. I’m not sure I ever felt that strongly but then again everybody’s different. Over the years, I have managed a sort of rapprochement with this disease. I look at my relationship with the diabetes like the Cold War. The two sides avoided antagonizing each other as much as possible because of the consequences of doing that. They exist, we exist and for now, that’s not changing. So you just live with it the best you can.

Of course, then the Wall came down and everything changed (for a while, anyway). At some point, they’ll find a cure for Type 1 and that should make this whole conversation and thread a moot point.

 

[MarkHaZ123]

@MarkHaZ123 It's when those other things are going on that it can sometimes be the hardest. Because besides what's happening you still have to deal with everything type 1 and it feels very unfair. Hugs.

Exactly. It just never goes away. Some days you just forget about it but when you have weeks like I have just had when bloods have just dropped quickly as you've worked an extra hour or so at work.

It's all the planning of things and making sure you have the right things with you

 

[MarkHaZ123]

The “I hate everything” thing sounds pretty normal after three or four years. I’m not sure I ever felt that strongly but then again everybody’s different. Over the years, I have managed a sort of rapprochement with this disease. I look at my relationship with the diabetes like the Cold War. The two sides avoided antagonizing each other as much as possible because of the consequences of doing that. They exist, we exist and for now, that’s not changing. So you just live with it the best you can.

Of course, then the Wall came down and everything changed (for a while, anyway). At some point, they’ll find a cure for Type 1 and that should make this whole conversation and thread a moot point.

We definitely live with it best we can. The day they find a cure would be great or even managing it without having to do much would be great.

Some days it's not even an issue but the next it can just cause loads of issues.

 

[ShandyT]

@MarkHaZ123 - I've found the L2 sensor a great boon to the constant finger-pricking we had to do a few years ago - loads of things got better over the 40+ years I've had it, gone are the days of boiling syringes before use and also the 2" needles that also had to be boiled before use and the pain when they started to go blunt , it can only get better I say

 

[MarkHaZ123]

@MarkHaZ123 - I've found the L2 sensor a great boon to the constant finger-pricking we had to do a few years ago - loads of things got better over the 40+ years I've had it, gone are the days of boiling syringes before use and also the 2" needles that also had to be boiled before use and the pain when they started to go blunt , it can only get better I say

I agree on that. I imagine it was alot worse than it is now and in x amount of years we'll be saying how easy it is compared to now.

Iv got the libre 2. Best thing I got. Due to my job as a bathroom fitter I requested it as to do finger pricks it was a nightmare. They are great to check patterns out

 

[Happy2bepart]

I would love to hear your thoughts on this important topic...............

I am sorry but I don't use instagram.
I have been Type 1 for over 57 years, always on insulin.
It can be very tiring constantly living with diabetes, and very frustrating. But you just have to, unpleasant as it is.
You live and learn and that is what life is about. We are lucky to be able to live with this disease, and still do things kind of normally. There are so many living in pain and horrible diseases that are also incurable, so just do your best and keep safe.
Bless you all.

 

[smc4761]

How long have you got

Its a constant treadmill, you can never switch off

The unpredictability of it all. Take same amount if insulin each, at same time, eat same food, do the same things. And yet 1 day its perfect, the next day dreadful

It is difficult to do things spontaneuosly.

Going away for a day is like planning a military operation. Glucose tablets, insulin, spare insulin, carbs, test strips or Libre reader, or both

Even after 41 years I can never stitch off

 

[himtoo]

How long have you got

Its a constant treadmill, you can never switch off

The unpredictability of it all. Take same amount if insulin each, at same time, eat same food, do the same things. And yet 1 day its perfect, the next day dreadful

It is difficult to do things spontaneuosly.

Going away for a day is like planning a military operation. Glucose tablets, insulin, spare insulin, carbs, test strips or Libre reader, or both

Even after 41 years I can never stitch off

your final sentence hit the nail .... you can never switch off .... sending good shoog vibes xxx