I’m type 1 diabetic AMA

[Moonicorn]

Not particularly unusual or interesting. But I’m quite a few years down the line now, and wondered if any parents of newly diagnosed kids wanted to ask anything - maybe things they don’t feel they can ask the doctors, or about the more ‘social’ side of the illness. Or just anyone who wants to know anything really!

@FrostyNethers the cut off shouldn't be 12. That's appalling. In the uk? I thought clinics regionally were getting better. NICE guidelines are quite good for the under 19s. You can move to another more proactive clinic?

@Moonicorn thanks for starting this thread. Sorry I didn't see it earlier!

So my fear as a parent of a T1 is night time management when away from home. When one day child goes to uni and doesn't wake to hypos, sleeping through alarms. How do you manage nights?

Btw I rebelled a lot in teens, did hardly any testing, went out drinking. I was still ok. Worry not. Tiz quite normal.

Because being a T1 in itself is very regimented, limiting, restricting. I had it from aged 1, so probably easier because I never knew anything else. Because you need to think about everything 24/7. 365 days of the year and you never get a break. every minute of every day, it's quite intrusive.

From the moment, I open my eyes before I've even opened my eyes I have to think about many things, every minute of every day, re my diabetes .

As soon as I open my eyes I think to myself : am I ok, is my blood sugar alright. I then take a wild guess as to what my blood sugar is. I'm normally very accurate. I think about have I been low in the night, have I had a good night sleep, am I ok now, is my blood sugar good enough, do I need to reach for some Lucozade? Am I ok to get up now ? Am I okay to have a shower, am I literally stable enough for me to get up and look after my boys and prepare them breakfast.(when they were younger, they are now older).

I then have to think about what yo have for breakfast, carb wise, or low carb? Have I got a lunch prepared for going to work, am I going to walk the boys to school or drive to work or ride my bike and how much carbs do I need for all those things. (with the boys going to school, when they were at primary, now they're much older. )

I also think about what's going on for the rest of the day and how I'm going to plan things and how this affects my diabetes. work meetings and am I going to run myself a bit higher so I don't go low. am I going to do this or am I going to do that? What time am I finishing? I have to make sure I have my blood sugar is good before I go and ...., for example, have my haircut .

No one understands how intrusive being a diabetic is. how you have to think about many many things many hundreds of times throughout the day. More than a normal person. just to try and be normal and this is actually very intrusive and very wearing and you never get a break from it .

Yes it's not cancer. Not life threatening. I know this. But don't think it's an easy medical condition. Because it's not. It's shit.

I have my eyes photographed for diabetic reasons every year and every year I'm ok and considering I've had it for 50 years I have no other health conditions, which if you go onto the diabetic forums it's quite unusual so I'm in a pretty good state, considering that I've had it for so long and like I say it's not life-threatening but let me tell you it's a fucking shit disease to live with on a day-to-day basis, so if your son wants to rebel for a bit quite frankly, I would just let him. I think that's very normal and then we all come back and go through stages where we test a bit more and take a bit more care another period of life, where we don't take as much care, but I think that's acceptable and only to be expected.

Most of the healthcare professionals I meet, haven't got a clue what it's like to live with day in day out .

Plus you do meet many diabetics who breeze through life quite easily and their diabetes does not seem to be very brittle and they seem to manage it quite nicely .

I met people on my Daphne course who were off, planning to climb Kilimanjaro and doing cycling round London etc and they were shocked at how brittle my diabetes was, how much my blood sugars are up and down every day they were shocked at how huge my dawn phenomenon was, and I didn't even realise it was much of an issue.

And often it really pisses me off when I read about how some diabetics go a bit low and had a tiny amount of orange juice and then they were okay again .

Well, My diabetes is a nightmare to deal with. I'm very extreme in everything I do even when I try and be very stable and I need loads of Lucozade to bring my blood sugar back up again. And I need loads of insulin when I'm very high to bring me back down to normal .

I'm very extremist in my diabetes, it's very brittle, it's very irritating. I've been under the best consultants in the world and they've had all my data on my Pump, data on my CGM, and basically they don't know what to do with me. I'm just one of those very irritating people who is hard to handle .

And consultants, and Pump Specialist Nurse don't have a clue. one of them recently told me that she went to a conference and shared a room with somebody on a pump and she was so irritated because it kept beeping at night and kept her awake .

I feel like screaming, I feel like saying to her you can't be serious you've been at Pump Specialist Nurse for 10 years and you didn't know this. You clearly have no idea what it's like living with this on a day-to-day basis.

So. I have poured my heart out here and told you how I feel.

I hope that's helpful to understanding your son and cutting in a bit of slack, if he is rebelling at this time . ❤️

@frosty it was me who mentioned your thread! I'm sorry to hear that you can't get a CGM or a pump. That doesn't sound right at all as NICE guidelines around this changed last year I think. All children should be offered either flash or CGM

https://www.nice.org.uk/guidance/ng18/chapter/Recommendations#type-1-diabetes

If they really won't offer you anything, is using your DLA to self fund an option? We initially self funded the Libre a few years ago (it was £100 a month and totally worth it), before we were offered it on the NHS and dd has recently moved to the Dexcom which is even better. This is NHS funded and our hospital offers a range of pumps as well (I have to say they are brilliant in this respect). I'm honestly disgusted that these aren't universal options across the country for kids with T1, as though things aren't difficult enough. As I said before, DD was a toddler when she was first diagnosed and the Libre was an absolute game changer. When she changed to the Libre 2 that had the alarms, I even managed a full night ls sleep for the first time in about ten years.

That’s awful, he should definitely get a pump, that way you’ll be able to manage the highs through the morning which, as you say, is probably puberty related.

When I was 12 (before the days of cgm and basal/bolus regime) I used to fit overnight if I had a hypo. I grew out of it. I’m also awful for turning my Fitbit alarm off and rolling over and going back to sleep over night, I know this isn’t great but I’ve never had any issues my body sorts itself out as shown here from last night.

@Oblomov23 I disagree that T1 is life threatening. I very stupidly googled dead in bed syndrome when dd was first diagnosed and didn't sleep through the night for the next ten years as I got up to test her blood sugar several times throughout. It's not just in the night that's dangerous either. That's without all the complications from high blood sugar and DKA.

Sorry, I disagree that's it isn't T1 isn't life threatening.

Well it's not particularly known for being particularly life threatening. Correction. It's Not terminal.

I've had more hypos and more dramas than most. I was hypo then strapped to the bed for weeks, in a Russian mental hospital, with bed sores until my mum got the embassy to fly me home.

I was awake at 6am. Because I fell over and have hurt my back. And because I woke up at 5am, thinking my blood sugars were high, when they actually weren't.

So I was awake. And I poured my heart out. What living with shit diabetes is like, after having it my whole life.

But that my mum tried to instill in me that I wouldn't let it stop me doing anything I wanted. Which I haven't. In my nature I'm very daredevil and say yes to most things. I've had a great life, so far.

But it is intrusive. But you took from my whole post, only that?

I have two type 1 children, my teen son is rebelling so any tips welcome, he's currently lost pump funding and back on MDI however even when I am with him he sometimes is refusing to do injections and I'm having to wake nightly to restabalise his blood sugars so to speak. I'm exhausted and at breaking point with it all.

My people!

Several threads on here describing what I find so hard to explain to family, friends and ‘helpful’ randoms. It is an absolutely all consuming lifeadmin condition that you cannot ignore without potentially immediate life threatening consequences (and slow killer consequences at the same time).

T1D for nearly 30 years since age 10. Definitely a wayward teen; was one of the ones who only took my long acting insulin, never the meal time short acting, would go years without finger pricking. Have some retinal damage now, but laser has sorted it out. Would agree with the suggestion up thread about a good dose of long acting insulin once daily, and monitoring on CGM for a teen trying to ignore.

For last ten year have taken it seriously, self funded Dexcom for last six years but now on Dexcom 1 via NHS after I could no longer afford to self fund (Libre was big step backwards for me when I tried it temporarily). Dexcom was biggest T1D game changer for me.

Moved to Omnipod pump nearly two years ago, and has certainly helped my control, but was using MDI like a pump before I swapped, with up to 20 injections a day for anything I ate/drank so not a big change in calculating bolus doses.

2DC which was the toughest few years with tight control whilst conceiving/being pregnant. Got to a point of being +90% TIR between 4 and 7, but was exhausting.

All in though, I don’t think T1D stops me doing anything, I just need to plan and think about life more than others.

@Oblomov23 I missed your big post (with my blurry morning eyes) we spoke on here years ago (probably when I was SpottyTeacakes), we had a longish thread running. I’m sorry things are so tough, you are totally right about how it completely consumes your every thought. I think we get so used to it we forget that it isn’t normal. If I remember rightly you were living a pretty low carb lifestyle before, do you still tend to do that? I try but sometimes fall off the wagon. My consultant is type one so I feel that helps a bit!

@WreckTangled
Yours looks pretty good.
Mine is awful. And worse still, my pump specialist nurse struggles to adjust because I'm quite un-patternless. I do this one day, and then totally different the next. So you can't just adjust my basals. I've been under top consultants for years. Don't you think that if I was that easy to sort they'd have done it by now.

My Hba1c is often ok. And I'm in range a reasonable amount. But the swinging, the instability is irritating to live with, when you are actually living it.

Apologies if I've upset you @Oblomov23 that wasn't my intention. And I absolutely agree with the rest of your post but I think I'm allowed to say that I think T1 is life threatening. Because it is.

This absolutely isn't aimed at you, but there's a misconception that diabetes just isn't that serious. That's it's only diabetes (which I got a lot of when dd was diagnosed). People just couldn't get their heads round why I had to give up work to look after her and why I looked like death warmed up because I got up several times through the night. It's only diabetes after all. It's not like it could kill her (well, yes actually it could. Not long after she was diagnosed, a friend's brother died in his sleep. He was only 30 and had T1).

I do low carb often. But then I rebel and think fxxk it, eat chicken Kiev and mash, crisps and salty spicy things.

Not at all Hot hands . No offence taken. I only live it, being a mother to a T1 child is a different dynamic. I'm sure my lovely mum would concur with you on the worry of raising me.

You made me sad about looking up the dead bed. I sincerely hope that you find a way to worry less. Actually forget that. I'm not sure that's even possible.

Mmmm I was chicken Kiev and mash now! I know exactly how you feel and it’s just physically exhausting when your sugar levels are bouncing around all day. Do you do resistance training at all? I find that that’s helped so much with my day to day levels and it doesn’t send me hypo like any cardio would.

Im going out for dinner tonight with work to a pizza restaurant and I’ve spent the past two weeks mulling over the menu as I literally don’t know what I’m going to have. Option a) something I really enjoy that will spike my levels all night or b) something I don’t really want/like but will keep me steady overnight.

This is my sons current cgm, his hba1c is 12.6 as I said he ignores all day and then the night I have to correct as much as I can. I am worried silly about him. How much long acting would you give in the morning? He currently has 13.5 units at 9pm. As obviously I could not put that idea to the nurse. I am willing to give anything a try at this point.

Oh gosh he must feel completely awful. We can’t advise on dosage, it would be really irresponsible. I really don’t know what to suggest it must be so worrying for you, hopefully he will come out of the other side, such a shame he lost his pump funding as surely a bolus with a pump is much more discreet and easy than one with a pen 😔

When I was on injections I had a split disease of basal - one in the morning and one in the evening. That might be worth considering.

Dosage not disease!

Sorry to hear how shit things are for you @Oblomov23

Your graph looks very similar to my daughters. Up down up down up down up down!

Poor him, he must feel awful. I agree, we can't advise on dosage. But fact is this isn't working. You must email nurse and say this is just not ok.

Before I had a pump, I had injections for over 30 years. I had long acting (actrapid and monotard ) and fast acting in the morning, to take me through the day, and deal with my breakfast. I had a tiny bit of fast acting at lunch. Then I had similar at dinner, fast acting to deal with my dinner and long acting to take me through the night. That is diabetic basics. Why they aren't doing that I don't know!
Maybe ask them! Say, I'm sorry this isn't working for us, what do you suggest?

And fight to get whatever you need given back to poor ds!

The consultant we saw suggested split long insulin but the head consultant didn't want to do that so they have said just one dose at bedtime. I just don't know how to engage him in it at the moment he doesn't seem to care. They've offered councelling but he won't go.

Pump was easier as I could see what he was giving himself also and I did use the injections sometimes to bring his levels down quicker as it takes longer.

I hope this is just a phase but it's been nearly a year now with no improvement.

@FrostyNethers
Have you tried getting in touch with Partha Kar?
He's really helpful and is the clinical director for diabetes. Get him on Twitter.
Re the struggles you're currently having with his BG, it sounds like dawn phenomenon or just the push of other hormones present in the morning that are contributing to his raised BG levels early on.
Is he on AM &PM basal or one injection of basal a day? It could also be that his PM has run out and his AM hasn't kicked in (or not enough of it)
He'd do well on a pump to be honest.

Thanks @HumourReplacementTherapy . He is on one dose of basal at night. Perhaps need to discuss with nursed about splitting it then? Today he woke up on 7.8, had breakfast (all weighed) and then went up to 16 for a good 5 hours. Then slowly comes down after lunch dose. He refuses to take a correction as still has insulin on board.

I will contact Partha. Thought about it before but didn’t as thought he’s probably inundated with people contacting him. Will give it a try.

A tip for when you have high BG and struggle to get it down - put a hot water bottle over your pump set/sit injection. It opens the capillaries and the insulin gets into your body quicker. Alternatively go for a 10-15 minute walk (not always possible I know) as it “activates” the insulin. But in both cases keep a careful eye on BG as it can then potentially plummet quickly.