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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To want to rant about how much I hate diabetes

135 replies

Edenviolet · 14/07/2014 00:26

So sick of it. Having to wake dd2 and feed her a biscuit as blood sugar was dropping then ten mins later it was too low so had to try and wake her again to feed her glucose tablets.

Its one of those nights where I just know that her cgm alarm will keep going off and its horrible having to try and get glucose into her when she's half asleep. Every time she plays in the garden on a warm day we have nights like this. Thought we had been clever and gave an extra snack before bed but she has dropped anyway.
Just wanted to rant because I really really REALLY hate diabetes

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bettys · 16/07/2014 09:02

Hi ds was diagnosed with T1 two years ago yesterday - D-Day as we call it. It is constant worry and hard work but I have come to appreciate that there are worse things that he could have. Still hate it though.

We could do with a diabetes board for help and top tips.

stillstandingatthebusstop for cricket have you tried spibelts? Or ds has these belts - but not in pink

Also second whoever said ring up the meter company for free meters - we use Bayer they have just sent us a new one that's rechargeable. We have a cupboard full of the things. And all the different test strips!

Tangarine · 16/07/2014 09:12

Morning bettys it was DS's diaversary on Monday.

Do you all know about the UK Children With Diabetes online group? It got me through the first few years and though I don't post very often any more it is a fantastic source of help and advice.

bettys · 16/07/2014 09:25

Ds's is the 14th too I thought it was 15th today doh!

The UK Children With Diabetes online group is full of great information with such helpful & supportive people on it, but a bit hard to navigate and use I found.

Nancery · 16/07/2014 09:59

stillstanding I think it basically was a mix up. The woman on the phone was polite enough but I still, maybe unnecessarily, felt humiliated as they have decided something is 'wrong' and I now 'need to be monitored' and 'have to keep control of my blood sugars.'

I have been type one almost all my life, have never had hospital admissions due to it, my HBA1c was between 5.3 and 5.4 during pregnancy and the highest it's been before or after that has been 6.4 and the only 'complication' is what has been described as 'a tiny bit of bleeding behind one eye.' That is why I got the hump!

I realise I'm over sensitive but I do get very defensive sometimes. It's not easy to live with, as wel all know, so a bit of credit occasionally would be nice!

Rant over, sorry!

stillstandingatthebusstop · 16/07/2014 10:13

bettys - I love you Grin

I have just ordered a couple of those belts on next day delivery! DS has a cricket match on Saturday (50 overs for an adult team) and they are short on players so he has been told he will be bowling a lot. He broke his pump 2 weeks ago getting sweaty from bowling (he had the pump tucked inside his waistband on a clip) so we are looking for ways to hold the pump away from sweat and cricket balls (that's what broke it last time). Tricky. So a massive thank you for that tip. I have ordered a sports case from Medtronic as well - but it looks massive and clunky and I'm not sure DS (16yrs and self conscious) will agree to wear it.

stillstandingatthebusstop · 16/07/2014 10:18

Nancery your Hba1c's are really impressive - especially to the mother of a Type 1 teenage boy.

Respect.

bettys · 16/07/2014 11:00

That's great stillstandingatthebusstop

It was the UK Children With Diabetes online group that put me on to those after ds lost an expensive belt from Funky Pumpers. We have several in kit bags all over the place for cricket, skateboarding etc.

It was only after I had given away some nearly new shorts & trousers that ds had grown out of that I remembered ALL his pockets have holes for the pump line…

Ds is on Medtronic too, but his Hba1c has been steadily climbing - I also am impressed with Nancery.

MaggieMcVitie · 16/07/2014 11:08

Bettys idea of a diabetes board is a fab one. MiniMcVitie was diagnosed 3 years ago and after a year of swinging wildly from hypo to hyper was put on a pump. We've been really well controlled for a while but HBA1C was up by quite a high margin at last review (6.3 - 7.4) and we are trying hard to claw it back to where it was. Find it so hard not to make an issue out of food, especially when his 11 yr old brother is eating like a horse at the moment...

bettys · 16/07/2014 11:36

I don't know if this is how you go about but I've just asked for one!
www.mumsnet.com/Talk/site_stuff/2134416-Dear-MN-please-can-we-have-a-T1-Diabetics-topic

bettys · 16/07/2014 11:40

Although maybe it should be diabetes in general……not sure as they have different sets of problems. Anyway please add comments on that thread for MNHQ to see.

paddyclampo · 16/07/2014 12:08

Loving your a1cs too Nancery!

Mine are usually in the high 6's which is why they won't give me a pump. Another reason I was given is that even though I suffer from hypos my awareness is pretty good and I have never been admitted to A&E with a hypo. That puts me in a catch 22 because if I did get admitted i'd lose my driving license!!!!

Sorry but I do have an issue with this pump refusal. I understand why kids get them so easily but I did my time as a kid with type 1! Does anyone out there self fund a pump?

I do agree with some of the previous posters who've said there are worse things than diabetes! Epilepsy definitely springs to mind, as do all those people who have things wrong with their digestive system eg crohns disease.

Trying to positive today!

paddyclampo · 16/07/2014 12:09

Great idea about the board by the way :)

Nancery · 16/07/2014 13:23

Thank you all! Feel both bashful and pleased now!

I think in some ways I've been 'lucky' in the sense that I've never, other than during pregnancy, become as prone to problems as some. Its knowing your stuff too, I agree, but sometimes that's not enough. I am proud of the fact that I manage it the way I have (I've done two Olympic distance triathlons, but also music festivals where I've drunk nothing but booze or water and eaten virtually nothing - and have never had a problem apart from once, three yrs ago at a wedding where they ran out of food, which isn't bad going if I do say so myself.) I think this is why I get so annoyed when medics (eg obstetricians or diabetic consultants who've never met me before) seem to automatically start from the stance of 'this patient needs to be taught the basics.' Trust me, this has happened a lot!

paddy I was told that my pump, equipment and the actual device, costs about £8000 year. This may explain why I've not known anyone self fund!

One tihing that's a pain in the arse (one of lots, I know) is losing weight / exercise. When I trained for the triathlon the amount I had to eat first was ridiculous. Hence, I may have got fitter but I certainly didn't look it! It's all very well saying I could lower my slow acting insulin (was on pens at the time) but it's not that simple. I didn't find it that simple lowering background with the pump either as it would have to be at least two hours before, after the right type of lunch etc.

As for losing weight (still have 2 stone baby weight to lose) I can't cut down things like bread / potatoes etc as easily as others or I go low. I have to be VERY organised about what I eat, when and so on but still sometimes need something extra. Lowering slow acting insulin means I run too high which freaks me out, and doing lots of exercise means I have to consume calories first anyway to get myself high so I don't lose that much that way either.

Oh the joys...

Flappingandflying · 16/07/2014 15:00

Very impressed with the Hb1c s. Having a son who now is just hungry all the time and is visibly growing is hard. Even snacking on an apple bungs hos bloods up and raw carrot and cucumber can only go so far...

Nancery · 16/07/2014 15:25

Can't you just give him more insulin to cover the snacks as and when? That's what I do if I'm grazing a lot. The pump is great for this too, something I do actually miss about it

lotsofcheese · 16/07/2014 15:31

I work in a hospital diabetes care team; I take my hat off to all of you living with diabetes on a daily basis, especially those of you with children who have diabetes.

I can only imagine how challenging it is, day in, day out.

paddyclampo · 16/07/2014 16:03

Flapping I just give myself extra units of insulin when I eat between meals. It does mean a lot more shots but i'm prepared to do it for the freedom!

Sleepswithbutterflies · 16/07/2014 16:26

The trouble with diabetes is that you're treating it with a drug that can easily kill you if you get it not quite right.
So consequently you have to make decisions every day that potentially could kill you. You don't just take a set prescribed amount. Not if dose adjusting anyway.

Flappingandflying · 16/07/2014 17:19

He does do that Paddy but sometimes it is hard. It was rather funny a few months ago as we went on a sight seeing trip to a village with a castle. He had a massive hypo and for once we didn't have much on us (normally I can feed a family of four with the amount of jelly babies and trackers I have on me). So he got to go into a sweet shop and chose a chocolate bar. It was a bit sad really and I'm not sure what the owner made of it of a 13 year old reading backs of packets, assessing amounts of carb and getting really excited over a lion bar which he'd never had before. Just sad that it was something so normal for most yet made his day! On the plus side, his teeth are good!

Nancery · 16/07/2014 17:28

I suppose everything is more simple in theory than in practice!

paddyclampo · 16/07/2014 18:46

How old was he at diagnosis Flapping?

Does anyone on here remember their diagnosis? I think the diet restrictions are much more relaxed nowadays thankfully!

Nancery · 16/07/2014 20:14

I vaguely recall it. We lived in the Middle East at the time and I got bugs from time to time, and I also swam a lot and ended up with an ear infection. The ear thing went but I felt sicker and sicker, and I remember being in my parents bed during the day saying I was thirsty but I was also really floppy and had no strength. So my mum brought me... Lucozade! after a few days, as I was getting weaker and sicker (funny that) they rushed me to hospital. I vaguely recall being in my baby sisters buggy as it was far too small, and I also remember being in a room with docs stood over me (presuming trying to work out what was wrong.) Apparently someone came in after various discussions and theorising and said 'test for diabetes.' No idea what my bg was but it was apparently dangerously high.
I also remember by hand hurting as they rapidly stuck me on a drip.

Nancery · 16/07/2014 20:15

Ps I was 4

paddyclampo · 17/07/2014 22:37

How's everyone doing? Wonder what havoc the heat is going to cause!

Edenviolet · 17/07/2014 23:53

Hypos again last night but great bg levels today, all afternoon we had 6.3,5.2,6.6,7.5 and that was even with it being dds party (bday last year ruined in nov so we did a little party today to celebrate her getting a pump and actually being able to eat some cake !)
She had two lots of party food then a bit of her cake (shaped like her pump!) it was so lovely that she could enjoy herself, have some treats with no extra jabs !

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