Frustration

[Fairygodmother]

I have asked at the diabetic clinic I attend once a year for my annual review about being put on a pump only to be told that I control my diabetes well enough that there would be no advantage for me and a similar answer from my Dr when i've asked about a Libre .

I self-funded the libre for a year; I was prescribed it on the basis that using it had improved my control and HbA1c. It’s expensive and I was very lucky to be able to afford it though I did first spend a few months wondering if I could manage to. I decided to try one, see how it went and then decide. I soon realised it was worth it.

 

[UK T1]

I have asked at the diabetic clinic I attend once a year for my annual review about being put on a pump only to be told that I control my diabetes well enough that there would be no advantage for me and a similar answer from my Dr when i've asked about a Libre .

I was told the same for libre! I had been testing about 6-7 times a day and was told it wasn't enough, but a kind nurse advised me to make my test strips more expensive than the libre (ie test at least 8 times a day). So for 6 months before my next clinic (irritatingly 1 1/2 yrs later, not annual like they should be) I set alarms and made sure I was testing at least 8 times a day to meet their criteria. Worked for me, but double check the criteria haven't changed though, a lot has been done to make it more available eg if you've got a learning disability or are pregnant.

 

[jaywak]

BS was better this morning , Down to 8.7 , If I keep it around there like I usually do they will tell me there would be no advantage to going on a pump or using a Libre , I think my only chance is to not look after myself and I don't think i'me going to do that !

 

[Civilised Devil]

Wasn't that much better this morning 16 for no explainable reason !

Hello, similar experience astra zenica jab 6 days ago still getting readings 18+ It has something to do with the vaccine lots of people on the forum raising concerns, how long did it take to return to normal readings?

 

[jaywak]

I had a bad experience with the highs , I started to give myself more Insulin but unfortunately had a serious nocturnal hypo biting my tongue and generally felt unwell do to that, after about 10 days bloods have gone back to normal in fact yesterday I woke with a 4.7 and the highest all day was 4.9 so gone back to my usual Insulin dose and keeping my fingers crossed .

 

[CathytheChef]

Hi can anyone else relate? I’m not meaning to disrespect fellow diabetics here, but does anyone else get really annoyed when you visit Diabetic forums and it’s constantly full of “perfect diabetic” posts?
E.g. “I’ve had diabetes for x years and I’m able to keep my insulin units to practically zero when I eat and my HBA1C is below 42 / 6%. I rarely hypo and my levels keep below 8.0 practically all the time.............”
I’m exaggerating - but it emphasises my point. I just get so annoyed and frustrated that no matter what I try, I struggle with my levels and always have since diagnosed as a child, and yet it looks like everyone else’s diabetes simply conforms and goes to plan?
For example my a1c is estimate 81mmol / 9.6% which for me isn’t that bad to be honest when I’ve previously had high a1c at 14% etc......... I’ve worked my bum off to get my a1c lower. During the summer my a1c dropped to around 72mmol / 9.2% but that’s probably the best it’s been monitoring it via Libre. But I come onto the forums and all I see is people worrying over a BG level of 8.0............. seriously? I woke up this morning and my BG was 26.0. I hypo at least once a day, and I’ve been on the pump list at my hospital since 2010!!!!!
But don’t get me wrong I am super happy that everyone else’s diabetes is going fine for them, but I always just feel so disheartened when I check the forums and see all these comments about how someone’s diabetes is “terrible” because their glucose test was 8.2. Seriously? I WISH my my BG was 8.2 on a daily basis! Sorry for the rant everyone, just one of those days I guess!

I am SO with you! I actually take regular breaks from forums for that reason. The worst is when they're like "it's so terrible - I had a massive spike to 10 and 3 months ago I had a slight hypo" .... it does make you feel pretty ****** I often see judgement too, like if you're struggling or you ask a question and you get some patronising "eating less carbs would help" or whatevs because they have no idea that not everyone's T1D is as easy to manage as theirs. This is also the reason why, on the very rare occasion where things are going my way, I never screenshot my libre or post about how great things are, because I know that somewhere reading that will be someone who's banging their head off a wall having been spewing over night with high blood sugars followed by 3 hypos in the morning and reading that would likely be the thing that causes them to smash their phone in frustration. Anyway, GREAT rant, and just know you're not alone xox

 

[jaywak]

I had a bad experience with the highs , I started to give myself more Insulin but unfortunately had a serious nocturnal hypo biting my tongue and generally felt unwell do to that, after about 10 days bloods have gone back to normal in fact yesterday I woke with a 4.7 and the highest all day was 4.9 so gone back to my usual Insulin dose and keeping my fingers crossed .

I'me actually giving myself less insulin than my original dose and have got even better bgs , This morning I was 5.9 and the highest i've been in the last few days has been 11which for me is brilliant .

 

[jaywak]

I am SO with you! I actually take regular breaks from forums for that reason. The worst is when they're like "it's so terrible - I had a massive spike to 10 and 3 months ago I had a slight hypo" .... it does make you feel pretty ****** I often see judgement too, like if you're struggling or you ask a question and you get some patronising "eating less carbs would help" or whatevs because they have no idea that not everyone's T1D is as easy to manage as theirs. This is also the reason why, on the very rare occasion where things are going my way, I never screenshot my libre or post about how great things are, because I know that somewhere reading that will be someone who's banging their head off a wall having been spewing over night with high blood sugars followed by 3 hypos in the morning and reading that would likely be the thing that causes them to smash their phone in frustration. Anyway, GREAT rant, and just know you're not alone xox

I was just wondering Cathy when you say spewing all night ! That's something I personally have never suffered from and I have had some serious highs , What sort of highs are we talking about to make us physically sick ?

 

[UK T1]

I was just wondering Cathy when you say spewing all night ! That's something I personally have never suffered from and I have had some serious highs , What sort of highs are we talking about to make us physically sick ?

I *luckily* haven't been made physically sick since I was diagnosed with DKA, but high bloods have always made me feel sick. Worst time recently was after I'd had the vaccine, about 5 hrs after my bloods shot up to around 20 and wouldn't budge. I spent a few hrs cradling a bucket while I experimented with bolus corrections to bring me back down and make me feel human again.

I feel it will depend on what you're used to maybe? Like those who constantly have readings around 4 risk becoming hypo unaware? But symptoms of hypos and hypers change so much from person to person I'm not sure there is a set level which would make everyone sick.

Also just to repeat my point from before (because I've just done it again!) do check if the person posting is actually type 1, because if not, they will almost have a completely different condition to control from us.

 

[UK T1]

I am SO with you! I actually take regular breaks from forums for that reason. The worst is when they're like "it's so terrible - I had a massive spike to 10 and 3 months ago I had a slight hypo" .... it does make you feel pretty ****** I often see judgement too, like if you're struggling or you ask a question and you get some patronising "eating less carbs would help" or whatevs because they have no idea that not everyone's T1D is as easy to manage as theirs. This is also the reason why, on the very rare occasion where things are going my way, I never screenshot my libre or post about how great things are, because I know that somewhere reading that will be someone who's banging their head off a wall having been spewing over night with high blood sugars followed by 3 hypos in the morning and reading that would likely be the thing that causes them to smash their phone in frustration. Anyway, GREAT rant, and just know you're not alone xox

Hi, from what I've seen those sorts of comments seem to be from those who aren't T1 but maybe I've also been lucky in missing some posts as I'm not often on for long and have often had longer breaks on here too. As I've said, I've been caught out a few times, then clicked onto the person's profile to see they're not T1 (rather than a robot, which is my only other explanation ).

Completely agree about sharing, but do have the odd screenshot for myself so I can remind myself it isn't impossible when I'm struggling.

 

[CathytheChef]

I was just wondering Cathy when you say spewing all night ! That's something I personally have never suffered from and I have had some serious highs , What sort of highs are we talking about to make us physically sick ?

I'm often physically sick if I have keetones :-( not necessarily DKA, just high blood sugars and ketones. Highs also pretty much always make me feel sick, regardless of if I have ketones or not. I think some people just tend to have more of a sensitive stomach - I also get travel sick quite easily and now I'm pregnant I have really bad morning sickness so perhaps just my constitution unfortunately :-(

 

[CathytheChef]

Hi, from what I've seen those sorts of comments seem to be from those who aren't T1 but maybe I've also been lucky in missing some posts as I'm not often on for long and have often had longer breaks on here too. As I've said, I've been caught out a few times, then clicked onto the person's profile to see they're not T1 (rather than a robot, which is my only other explanation ).

Completely agree about sharing, but do have the odd screenshot for myself so I can remind myself it isn't impossible when I'm struggling.

Yeah I do keep screenshots for myself too, and when I'm really proud I might send them to a friend - there's nothing wrong with being happy when things go right :-D I just don't post them on forums.