Constantly worried about everything

Hi everyone!

I was diagnosed with type 1 or maybe LADA a week or so before Christmas (although not absolutely confirmed yet, still waiting c-peptide/antibody test results and was initially told type 2 - my age (26) made them reconsider and refer me to the hospital where they decided type 1/LADA).

I'm now at a stage where I really need to be getting back to 'normal'. Some days I think I am getting there and things seem to be going well. The nurse even told me I was doing well and she was impressed I managed to get things under control so quickly.

And then there's times like today, where I skipped breakfast because it was later than I wanted and I didn't want to be high at lunch. I spent all afternoon trying to decide what I wanted for dinner (was craving lasagne, but was scared because carbs and fat). I finally decided I was going to try and see what happened, but the shops didn't have any in stock. Spent waaaay too long trying to work out what I should have instead, finally decided on the same chicken salad wrap I've been having all week, even though I didn't want it. By this point it was later than I wanted to have my dinner, since I like to keep an eye on my sugars after I eat and can't do that if I'm asleep. So then literally spent the next hour crying about my f****** chicken wrap, that I didn't even want, trying to decide if I should just skip dinner too and keep my sugars good - obviously, all the time it was just getting later and later. I did eventually decide I should probably eat, but I'm regretting it now since I only just started going up and I'm knackered and want to go to bed.

I know it probably seems ridiculous to get so worked up about something so small/inconsequential, but this seems to be happening a lot lately. Is this just something that will get easier with time? How do I stop worrying about everything and every meal and constantly checking blood sugars and trying to work out what's acceptable levels/what's too high, even whether this is normal for a type 1 or more like type 2. As far as everyone else is concerned, diabetes is a very manageable condition these days and I should be able to lead a normal life and even eat 'normally', but it doesn't seem like that to me at the moment. I just want to be able to get on with my life.

Sorry for the rant - I'll be impressed if anyone actually makes it this far!

Antje77 said:

I'm sorry you're having such a hard time!

It takes time to get used to a diagnosis like this, and it takes time to work out how to manage diabetes. This is a marathon, not a sprint!

As a T1 (or LADA, which is a variety of T1) you'll need to learn how to adjust your insulin to your food. It's very different from T2, which sometimes can be managed by diet.
What insulin(s) are you on for now?
If you're on mealtime insulin already, you can start with logging your meals, your doses, and the numbers you see in the hours after your meal. This will help you and your diabetic nurse to work out the right dose for you.
It helps a lot if you start getting a bit of feeling for the amount of carbs in your meals to, so check packages and ingredients, and see if you can spot patterns between what you eat, the amount of insulin you took and your numbers.

Seeing as your nurse said you're doing very well, you likely are!
Don't compare your numbers to those of well controlled T2's on the forum, T1 is a different condition!

Please keep eating! Not eating won't help you, and if your meal makes you go high, it only means more information to base your doses on, it's alright.

Take a deep breath and go to bed!

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Thanks for the reply - I really do appreciate your help.

I'm currently on Levemir (morning and night) and then NovoRapid with meals. I've been carb counting and in general I think I've gotten my dose about right, but I've also been sticking to similar foods since I know what's probably going to happen. Of course, that doesn't stop me worrying it might be different the next time! I think I need to sort out timings though - my peaks seem to occur at random times after I eat (e.g. tonight, I had no rise - actually dropped a little - for about 2 hours and currently peaking 3-4 hours after my food). So then I don't want to eat if I don't think I've left enough time before my next meal or bed or at least I get myself all worked up about it if I do want/need to eat sooner etc.

I think you're right about the deep breath and bed though - hopefully I'll feel a little better in the morning.

EllieM said:

One of the purposes of these forums is to have a safe place to have a rant/vent/cry.

It's entirely understandable that you're currently stressed and upset. You'd probably just got your head round a T2 diagnosis and now you have to manage a T1 one.

As @Antje77 said, don't get stressed by the T2 figures. You're going to be injecting insulin for the rest of your life and that is unfortunately harder to manage than endogenous insulin.

But on the plus side, you'll get a lot more goodies from the NHS as a T1 (eg libre, access to diabetic consultants, maybe an insulin pump if you want it) and though T1 is a pain, it needn't stop you from achieving any of your aims in life (hopefully you weren't planning on becoming an astronaut but olympic athlete and prime minister are doable).

Speaking as a T1 for 51 years, who has had atrocious blood control in her time and is still active and healthy with working eyes, limbs, kidneys etc, you don't have to keep your blood sugars perfectly under control all the time. Blood sugar control is a learning process and I for one am still learning. Modern technology makes it a lot easier than it used to be but you will get it wrong sometimes, just because there are so many factors that effect your bg. As a T1 you have more food freedom than a T2 and you will eventually learn how to (mostly) balance your insulin with your choices.

Lots of virtual hugs and try to be kind to yourself.

Good luck.

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Thanks for the reassurance.

I think at this point I'm still just not sure what is ok and what is not in terms of blood sugars and so I just worry about any spikes etc.. I guess over time I'll work out what's ok/normal and so I'll know when to actually worry!

ert said:

Injected insulin is not like normal insulin and follows a fixed curve over 5 hours and doesn't match the food you eat so you will spike. On DAFNE you learn to ignore spikes to eat normally. As long as your blood sugars return to pre-meal levels 5 hours later, then your dose was correct.
I worry about eating and what I"m eating and the timings of eating too. But I've learned it's a positive thing as I've managed to achieve a normal HbA1c.

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Ok, that's really helpful to know because I do think that most of the time, I am back down after 5 hours. Is there ever a situation where it takes slightly longer?

In the evenings, I find that if I am still high before bed, I seem to not come down fully for up to like 7 hours? e.g. I ate at about 20:10 last night, initally dropped slightly for a couple of hours then peaked at about 23:00 (at around 8 mmol/L) and got down to baseline by around 3:00 (where it was then flat for the rest of the night).

becca59 said:

@KatMac1 welcome! Such early days for you and from what has been said you are doing very well. As people often say, managing Type 1 is a marathon not a sprint. Have to say I would be dancing around the room with a peak of 8. As @ert says if you are back in range 5 hours after a meal then you are doing well.
One of the things we do find, iss that stress itself interferes with glucose levels. So, take a deep breath, choose something different to eat that you really fancy, and go for it. It may work well it may need adjustments next time you eat it. But nothing bad is going to happen if it doesn’t go too well.

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Thank you for the reply!

I definitely need to try and relax a bit more about everything, but I do struggle when I don't know what's normal and what's not. I think I'm just prone to worrying! I might try and have something different for dinner tonight and try my best not to worry too much - not sure what, but I'll have a think.

The 5 hour thing is definitely reassuring though - I thought it was supposed to come down quicker than that. (I do also regularly go higher than 8 - after breakfast this morning I'm at 10 for instance).

Rokaab said:

The thing you have to remember is that despite a lot of medical improvements we cannot replicate the pancreas's job of producing insulin like it would, it's just not possible - we can do our best but most of us just cannot expect to have normal blood sugars like a non-diabetic, and we also have to accept that sometimes it will just not play ball at all no matter what we do

Heck, I totally grin if I get a day where I don't go over ten at all

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I think based on what you and the others have been saying, that maybe I'm just expecting a little too much and then getting a bit worked up when it doesn't go how I wanted.

So maybe I just need to accept that it's never going to be perfect and just try my best - probably easier said than done, but I'm definitely getting a better idea about what is 'normal'.