Active discussions

Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

OP posts:
WilburIsSomePig · 15/07/2014 20:37

What pump is your DD on Hedgehog? I am so tired all the time I fee like crying. The night testing is harsh but I can't sleep unless I check her at 2am, it's a vicious circle really. We are almost 5 years in now, she was diagnosed when she was 3 and we live with it day to day but I hate, hate, hate, hate it.

Nancery · 15/07/2014 20:41

paddy I'm sorry to hear that. I got my pump really quickly as my control went from a doddle to an unpredictable nightmare when I got pregnant. I think most people love them but, personally, I found wearing a device in the part of my body I found most hideous (middle) that had dandling tubes and was usually either a 'last resort' for both types 1 and 2 horrible. However, I think I am in the minority!

Nancery · 15/07/2014 20:42

Paddy, I'm the only one (so far) in my family too

ElectricalBanana · 15/07/2014 20:59

my DD is 22 and has type 1 and insulin resistance.

she also has SEN

I havent had a proper nights sleep for 22 years....oh i lie...i had 5 nights 6 years ago and i had a night last saturday .....my honeymoon and a night out to celebrate DHs 50th birthday,

yes its shit....its still shit

Nancery · 15/07/2014 21:05

Sorry to hear that ElectricBanana

ElectricalBanana · 15/07/2014 21:10

tbh i am used to it now ha ha ha ha ha hhhhhhysteria!

i do sleep but every movement i wake up...i am on high alert all the time.

Nancery · 15/07/2014 21:21

I'm not bloody surprised! So, if she's going low can / does she tell you or is managing all of it basically down to you? (Sorry if asking dumb questions)

Original poster
Edenviolet · 15/07/2014 21:37

Dd has an animas vibe pump and uses dexcom cgm sensors. The pump is brilliant, she was on 5-7 injections a day before and it was horrible her little legs were sore and bruised and had a few lumps.
Dd was diagnosed dec 12 and we have always done night checks but with the dexcom we know the alarm will sound (and its loud!) if she goes low, drops v quickly or rises very quickly, it gives us such peace of mind esp as she has no hypo awareness and bg can be erratic.

Today was a rubbish day. All went wrong after lunch. I'd weighed everything as usual, worked it out and she was 5.1 before eating so all looked fine. Two hours later ... 22.1 ?!? Had to give a correction, 7.3 before dinner then an hour later hypo, treated it twice as it dropped again then she has been hovering around 4.4 all evening so I'm on edge. She has been grumpy and tearful all aft as well.

OP posts:
Original poster
Edenviolet · 15/07/2014 21:42

Yes- being on high alert all the time is exhausting, that's the bit I hate the most I think. I never relax and its draining.
Even the other day dd1 wanted to go to costa, was meant to be a treat but then dh couldn't have dd2 as well so I took her too but she was dropping fast so I ran to costa and poor dd1 couldn't keep up but all I could think was avoid a hypo and try and still get dd1 her drink. Then I felt guilty it wasn't the nice treat dd1 wanted and it was all about diabetes again. Dd2 wanted a drink, I thought ooh well she's low ish I can give it a try, worked out the carbs on half a small drink,she was excited, we bolused for it she had a sip and "waaaaahhh I hate it its toooo cold!!" Then in my panic I had to find an alternative snack to avoid her going hypo. Hate it Sad

OP posts:
Sleepswithbutterflies · 15/07/2014 21:47

I was diagnosed aged 10.

I retrospectively feel terribly terribly sorry for my parents.

Flappingandflying · 15/07/2014 22:35

Flapping lad has gone and broken his meter again. His drink in his school bag burst two weeks ago so dashed up to hospital to get a new one. Today, he turned it on to test before his sport activity and the screen is bust. Am going to have to grovel to the nurse....

paddyclampo · 15/07/2014 22:39

Sleepswithbutterflies reading posts on here always makes me feel so bad for my mum. The parents always seem to having such a tough time. My mum did such a good job of keeping all this from me. After she died though I found out that she always kept the last photo she had of me before my diagnosis.

hedgehog it must be quite tough on your DD1 as well :(

Nancery · 15/07/2014 22:42

How old is your DD? Have you been given any tips, if there are any, on raising or creating hypo awareness? Does she go low, by that I mean needing serious attention, very quickly or can she be fine at, say, 3.5 as long as something is n it's way?

Am so sorry to hear it's, unsurprisingly, getting you down.

stillstandingatthebusstop · 15/07/2014 22:51

Flapping - try phoning the company that makes the meter - less grovelling required.

Nancery · 15/07/2014 23:02

I was about to say the same. I've gone through 2 insulin pumps and four meters from Roche so am very familiar with the procedure! (Faulty machines, I'm not outrageously clumsy!)

itwillbebetter · 15/07/2014 23:12

Can I join in? My ds2 was diagnosed t1 4 weeks ago. Total shock. I must admit I was completely naive and didn't appreciate the huge learning curve we have all gone through. I had hoped it would get better but after reading this it seems it may not :(

Yep, diabetes is shit and I'm so bloody angry about it, all our life's have turned upside down Angry

Nancery · 15/07/2014 23:25

Can I put my head above the parapet and say something please?

Diabetes, whatever form, is often a pain in the arse. It can be dangerous, unpredictable, inconvenient and damaging. However... It would be weird to have something of this nature and not to have horrible periods, times when it's got in the way, times it may have made you ill (or made something relatively mundane far more serious.) These things don't set a precedent for forever. Bodies become easier to read, you get used to things and for the majority of the time, with effort that eventually becomes second nature, you can control it rather than it being the other way round.

paddyclampo · 15/07/2014 23:38

Itwillbebetter - i'm just having a rough few days, i'm not normally this down about my diabetes. The condition WILL become easier to handle and your DS2 will mostly just get on with it, it will all become second nature.

I think the main problem most of us have is getting people who have no experience of diabetes to understand. In real life a lot of people don't really have an outlet - so we're venting on here.

Spot on Nancery. I know that if I look back diabetes hasn't held me back or stopped me doing anything. With the right insulin regime i can do and pretty much eat anything i want. I've been to uni, had kids, got married, had many fun, drunken nights - and I'm mostly complication free :) So it's not all bad.

Nancery · 15/07/2014 23:46

Thanks.
As I pressed 'post' I remembered that it was merely last Friday I burst into tears about it. I thought I'd had the right retinopathy eye test, it was somewhere on their recommended list and the optician told me I had a tiny amount of retinopathy in right eye but will be fine to just have it re checked in 12 months; Friday got letter telling me I'm overdue to book urgent apt as may need treatment etc and the woman on the phone told me I hadnt had the eye test at all and started to lecture me about blindness. I felt humiliated as there is something there so she sort of has a point, even though it's not dangerous / expanding. I felt judged and as if I had 'done something wrong'. Stupid I know, but...)

Tangarine · 16/07/2014 00:00

Fellow parent of a child with T1 diabetes here - 12 years and counting in our case. I try to think of it as an unwelcome guest in my house - we didn't invite it in, but as long as it is living with us we have to be polite and respectful, without letting it rule our lives. I have had many a broken night's sleep treating highs and lows, but DS doesn't know the half of it. not because I'm a martyr, but because I don't want him to feel guilty or (too) different. It's the constant balancing act that is so wearing as a person with diabetes.

DS copes admirably - he is on his first holiday overseas without an adult ATM. He plays sport to a high level and is in the middle of drafting his personal statement for his UCAS application. His biggest annoyance is that he is not allowed to join the army with T1.

It really pisses me off when people ask him if he ate lots of sweets when he was little to get diabetes Angry. I was pretty ignorant about diabetes pre-diagnosis, but even so would never have asked anyone that.

Great to see you paddyclampo, but sorry about your pump knock-back.

stillstandingatthebusstop · 16/07/2014 07:26

Itwill - diabetes has not held my ds2 back. He has played cricket for his county and is going away to a festival with his mates in a few weeks. He is happy and doing well at school. Things do settle down after diagnosis and it is manageable - but a pain.

Tangerine - you must be worrying about him? We are 10yrs post diagnosis.

stillstandingatthebusstop · 16/07/2014 07:28

Nancery - that sounds like a mix up that wasn't your fault. The woman sounds mean.

Original poster
Edenviolet · 16/07/2014 07:37

Dd can be running/chatting/playing and seemingly 'ok' at 2.3 so its terrifying when she suddenly drops to the floor (that was one the dexcom missed as she dropped from 9. Something to 2.3 in approx six mins and it didn't alarm soon enough).
We've run her higher but rather than get the awareness back she just gets thrush. Hoping it just gets better with time. Initially post dx she had good awareness but after the dsn mucked up (fixed doses that were too high and then constant hypos each day dd lost all awareness)

OP posts:
StanleyLambchop · 16/07/2014 07:51

Sorry to de-rail, but can we add epilepsy to the list of things to hate. I know the feeling of being on high alert, never relaxing, having to build our lives around taking the next dose of medication at a certain time. Tis shit. Good luck to all of you coping with bastard medical conditions!

Flappingandflying · 16/07/2014 08:31

Another raising head above the parapet although flapping lad has been brilliant and although having the longest honeymoon period ever so having crashing hypos and spending a lot of time at primary out of the classroom thus affecting his education, it's not affected too adversely. it's been a nuisance but, to date, manageable. Now Flying Boy has autism plus other sen difficulties. Compared to that diabetes has been easier although I appreciate that if DS2 s diabetes had more complications I might not think that. There's a possibility he might have an overactive thyroid. We are just waiting for the results. I do worry that for some reason he's got a system that attacks itself rather than a virus/ bacteria so dread what is going to 'go' next. What does piss me off is that at clinic they are never happy. Hb1c is stella yet too many hypers in the morning. Change something, we do....too many hypos in the morning. Lunchtimes a problem at school because it is at 1.30 so of course he's starving at 11 so eats an apple, oh look bit high result at lunch....could go on.

When DS1 was diagnosed with HFA/asperger's you get given devastating news, handed one poxy leaflet, and that was it. No support, no guidance, no anything from health. We have had to fight via tribunals for therapy and education for him. As for comments. I tend not to tell people because they either think of savants 'oh I bet they are brilliant at maths/ drawing' or give you the head tilt and pity look or downright rejection 'does e do parties? E can come but you've got to stay wiv im' was one that sticks. Alternatively they think they are loners plotting cyber crime in dark bedrooms or just weird. People might be really misguided about diabetes but at least they still treat the person as a person.

Deffo would rather deal with diabetes than epilepsy so Stanley rant away!