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

[Soplewis12]

The loneliness of it! That's why I love this forum.
I bumped in to a lady last weekend when out, a couple of wines down & noticed her libre. We started chatting and both of us said the loneliness of it at the same time. She was only diagnosed 7 months ago after covid.

 

[LooperCat]

Having to renew my driving licence annually.

 

[Hopeful34]

Good to see you posting @LooperCat, how are you? Hope you're keeping well, and getting some down time from your work. Thank you for all you and your colleagues do.

 

[Jaylee]

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.

One I can think of..
Looking after a 90 year old woman with Alzheimer’s. Juggling her dignity & wellbeing with my own “plate spinning?”
I’m currently doing 2.5 weeks of it to give my sister (Mum’s full time carer a break.)

One beauty of it. Is she knows “one of us” (siblings) is a diabetic. I just don’t get the “mum fuss” any more. Sad thing is the role reversal? It’s now my job to make sure she eats.. She never understood the move to MDI, even before the Altzheimers..?

Many years back, she told me she felt guilty for the T1.. (In my late teens.) My simple reply was ,“sheds happen..” (yep, I’m paraphrasing for the sake of the forum rules.) like flyposting, you never see a shed erector.. I’ve built a couple in my time. But yet to meet another in the wild..

 

[david4503]

Having to renew my driving licence annually.

Is this the case for all type 1s in the UK, annual reviews and/or renewals? If so, why? Don’t they trust you?

 

[Jaylee]

Is this the case for all type 1s in the UK, annual reviews and/or renewals? If so, why? Don’t they trust you?

Looper (from memory.) drives a ambulance.. A little more stringent than a PLG vehicle. (3 Years max.)

 

[LooperCat]

Is this the case for all type 1s in the UK, annual reviews and/or renewals? If so, why? Don’t they trust you?

I have a C1 lorry and D1 bus licence, which needs annual renewal.

 

[jennav86]

I have really been struggling with my weight and find dieting with type 1 so hard!! I was diagnosed at 2 years old and I’m now 37!! So 35 years I’ve lived with this - I suffer horrendous hormonal imblances and 3 years ago was prescribed prozac which has saved my life and marriage! But I’ve piled 5 stone on and can’t shift it!! I’ve got two children, two jobs, two dogs and a husband that works away all week - sorry for the rant but just a long time diabetic that’s had enough and feeling a tad sorry for myself

 

[david4503]

I have really been struggling with my weight and find dieting with type 1 so hard!! I was diagnosed at 2 years old and I’m now 37!! So 35 years I’ve lived with this - I suffer horrendous hormonal imblances and 3 years ago was prescribed prozac which has saved my life and marriage! But I’ve piled 5 stone on and can’t shift it!! I’ve got two children, two jobs, two dogs and a husband that works away all week - sorry for the rant but just a long time diabetic that’s had enough and feeling a tad sorry for myself

At some point years ago, my endocrinologist told me to lose weight. I said, really? How? He said, eat less. I had to think about that one. Turns out it’s possible to do and I’ve had success with it. You would need to adjust your insulin downwards to go with the decreased caloric intake but it can work, at least for some. Consider also that taking insulin can promote weight gain, so there’s a benefit if you need less, however you get there.

 

[EllieM]

I have really been struggling with my weight and find dieting with type 1 so hard!!

I'm not a position to criticise anyone who has difficulty in losing weight, let alone if they've also got T1. I find that lower carb keeps my weight in check (overweight instead of obese), but I then bitterly resent being forced to use my carbs on glucose when I'm hypo.

And yes, exercise helps, but I'd imagine that with two jobs, two kids, two dogs and a weekend only husband, your time for any self care is limited. (Maybe when the kids are older you'll have time for longer walks with the dogs???)

Lots of virtual hugs from a fellow long haul T1 (52 years, but I was diagnosed at 8, I can only imagine how hard it must have been to be diagnosed so young).

 

[david4503]

Just to clarify for jennav86, taking less insulin in order to run high blood sugars and lose weight is a terrible idea. Nobody should do that, period. But some choose to do it anyway. What was recommended to me was less food and a correspondingly lower dose of insulin. That’s a different ball of wax altogether because it maintains good control.

 

[ert]

Hypos. Variability. Two things.

 

[Pennystorrs]

I have really been struggling with my weight and find dieting with type 1 so hard!! I was diagnosed at 2 years old and I’m now 37!! So 35 years I’ve lived with this - I suffer horrendous hormonal imblances and 3 years ago was prescribed prozac which has saved my life and marriage! But I’ve piled 5 stone on and can’t shift it!! I’ve got two children, two jobs, two dogs and a husband that works away all week - sorry for the rant but just a long time diabetic that’s had enough and feeling a tad sorry for myself

I think anyone would struggle coping with all you are doing, never-mind a diabetic , and you have all the extra responsibilities of taking care of yourself .
Sometimes we expect too much from ourselves … can you take some time to just relax? It is important to enjoy every day … and recognise you can only do your best. Sending you a hug . X

 

[msamson]

Type 1 since June 1965. Most frustrating thing has always been not being able to just have something to eat or drink when offered when your friends are all eating and drinking.
It is a lot easier these days as there is a lot more control, and more understanding by others.

 

[Jc3131]

Mines feeling angry when you've done really well and kept your levels decent. Then one look at something sweet and the blood sugar rollercoaster begins.

Being restricted and also just the exhaustion of not being able to switch off. Also after a night of higher than 'normal' levels it's the hungover and tired feeling that usually follows.

 

[Lrlp]

Everything about it annoys me. I was a carer in my community for 9 years (left a year ago) and my boss was horrible, never gave a sh*t about me as long as she was pulling in the money. She would give me so many clients to go to in a time frame so I was rushing and I'd end up being stressed and annoyed at myself because I have t1d and would have to stop to test my bg. After handing in my notice she was being patronising by saying "you aren't well love". I said "I'm fine now ive handed in my notice, the only reason I'm never fine is because you bloody well stress me out!". Not being big headed but she lost a good carer because I would always go the extra mile to help and even in the snow and floods I was the only carer who managed somehow to get to certain clients who needed me. 9 other carers left after I did.

 

[ShandyT]

Type 2 since 2012. Hi ! Good question and you should get many answers. I miss Chocolate and a sweet after dinner, I have a boring diet which is suposed to reverse my diabetes but it's not working as quick as I hope it would, so I battle on being a good boy.

Not attempting to advertise anything but we've noticed since my other half became dairy intolerant that Hotel C

vegan chocolate doesn't raise my sugar levels too much (in moderate amounts) and also the chocolate cravings satisfied by

 

[ShandyT]

I hate the thing about Type-1 is the inability to go out to all night parties and getting drunk and binging on food at any time especially between 3-5am on ANY type of food without thinking of Carb levels, from Kebabs, Patties etc, and constantly checking blood sugar levels - OH for the days before the onset of Type-1.
But STILL love riding the Triumph and going to rallies and having fun, just peeved about checking BG levels all the times

 

[ShandyT]

Odd I have non of your problems so, I find the NHS staff very helpful and am very grateful for them , my consultations always on time ( it helps if you ask for the first appointment . I don't understand why they don't give you repeats. I have been T1 for 30 years and it has never been a problem. .

Really lucky you - I' haven't had any appointments in over 3 years now

 

[Marie 2]

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.