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

[himtoo]

thanks all for some great replies .... i will add my thoughts now


i find the relentlessness the most frustrating....i am always minded of this when i have come down with a bad cold or flu or bronchjtis when all i really want to do is sleep but even then i have to be vigilant and test and correct or risk DKA

 

[Juicyj]

Hey @himtoo

Yes definitely the relentlessness, having just experienced grief which was consuming in it's own right then swinging BG levels which felt out of control and compounded the situation even more, it was really hard work. Nowadays I appreciate a break from T1 more than actually having a holiday as it's less mentally wearing when things are stable and in control.

Sadly it's made me a bit boring as I like unpredictability and same old same old..duh...

 

[Smiler99]

I have only been diagnosed for nearly 7 months, what works one day doesn't work the next day...

 

[becca59]

I have only been diagnosed for nearly 7 months, what works one day doesn't work the next day...

So so true. And that is other people and medical teams don’t appreciate.

 

[Jaylee]

So so true. And that is other people and medical teams don’t appreciate.

I've lost count how many times my team has declined "hanging out" with me for a week?
I even offered to lay on the transport, catering & accommodation..

 

[Ledzeptt]

I hate having to eat when I don’t want to (not hungry), particularly any form of glucose/sugar which I’ve learnt to automatically avoid/perhaps detest.

The feeling is worse at night, when I’m tired and only want to go to sleep, but it’s “not safe” to do so because my BG is too low.

It doesn’t help that Mrs LzT is jealous I’m eating the “forbidden” foods and she’s “on a diet” again, so neither of us want the damned stuff!

 

[scorpius14]

having to deal with the type of people who think theres only 1 type of diabetes and assume its down to my diet (quite slim build) and insist on trying to control my life by telling me what I should or should not eat, therefore I do not disclose it to anyone even employers and try to keep my episodes and injections discreet, i think its still early days even with the amount of awareness charities are raising

 

[Fairygodmother]

The unpredictability of it, and the fact that it’s always present, there’s never a moment without it.
Making plans that are scuppered when blood sugars aren’t yet right, and knowing people won’t really understand, may be kind but will feel let down, because it’s only those of us who live with T1 who really know what living with T1 is like.

 

[Niamh1]

Diabetes is generally tiring injecting and having to carb count with every meal. one other issue is that when i am really hungry i have to wait to eat

 

[Fenn]

Cycles joy riding on single lane public roads

 

[In Response]

The one thing that annoys me most is that people think there should be something about Type 1 diabetes that is annoying.
I’d rather not have it but life’s too short to get annoyed by things I can’t change so I focus on what I can change or minimising the risk of getting a complication which would annoy me.

 

[Nicola M]

No two days are ever the same, I could do the exact same thing on 2 days and get completely different results.

 

[Antje77]

The one thing that annoys me most is that people think there should be something about Type 1 diabetes that is annoying.

It's not mandatory in any way to be annoyed by any aspect of your diabetes. If you're not, all the better!

But for many T1's annoyance with it is a significant part of life, and that's valid.

 

[Circuspony]

BG going haywire in the heat. Couldn't get below 12 yesterday until bedtime when it plummeted to 5. Today I've had lots of biscuits, ice cream and fruit and I'm still trying to get above a 5 before sleeping.

 

[Fairygodmother]

BG going haywire in the heat. Couldn't get below 12 yesterday until bedtime when it plummeted to 5. Today I've had lots of biscuits, ice cream and fruit and I'm still trying to get above a 5 before sleeping.

I’ve had this too. It’s as if the bolus just lies back in a deckchair until the sun goes down. I’ve upped the basal, and am now hoping it will behave. In past, younger years, basal needed to be lowered in heat. Another T1 thing to be petulant about - or annoyed - or pragmatically accepting: has T1 affected the efficiency of my cardiovascular system.

 

[luv2spin]

My Mom.

 

[himtoo]

The one thing that annoys me most is that people think there should be something about Type 1 diabetes that is annoying.
I’d rather not have it but life’s too short to get annoyed by things I can’t change so I focus on what I can change or minimising the risk of getting a complication which would annoy me.

How lucky it would be to have never had a single moment where either a bad hypo requiring hospitalisation or paramedics , a bad hyper causing a DKA and hospitalisation , a messed up prescription or insulin not included , a friend that doesn't get it , a doctor that is patronising, time spent in waiting rooms multiple times a year, an employer that penalises you for time off for appointments , a diet drink ordered that arrives as full sugar , forgetting your diabetes kit at home ever, not having support as a newly diagnosed type 1 because the system is overloaded, being told it is your own fault getting type 1 because you ate too much sugar as a child, being diagnosed with a complication ( which does happen ), having to apply to renew you driving licence every 3 years , having your licence removed for having a hypo, having bruises constantly on your body that affect what you might be comfortable to wear in public or just being annoyed that you caused guilt or pain for other people close to you that worry about you, or a myriad of other reasons that affect the rest of us living with type 1.

Mod edit.

 

[becca59]

Diabetes is generally tiring injecting and having to carb count with every meal. one other issue is that when i am really hungry i have to wait to eat

Unless waiting for high levels to come into range, why are you waiting to eat if hungry?

 

[RoughcutAU]

Unless waiting for high levels to come into range, why are you waiting to eat if hungry?

It is often suggested to take your fast acting insulin 10-15mins before you eat so the peaks line up better. Personally most of the time i just do it immediately before the meal especially when out because of uncertainty of meal delivery times.

 

[david4503]

Having to think about it so much! Its exhausting making so many decisions on a daily basis, and I hate how rubbish I feel when I’m having a bad patch with rollercoaster bloods - especially trying to handle hormonal days

I really don’t think the powers that be considered this at all before they made the move to carb counts and calculating/re-calculating every dose of insulin. If I had to live like this, I’d have been mentally exhausted or worse long ago.