0 confidence with my type 1 diabetes and hypo anxiety

[gab_07]

I was diagnosed with type 1 when I was 12, and I am now 20. I am in my final year at university, which is 2 hours away from home. I have my boyfriend of 2 and a half years here with me to help me, but I have absolutely no confidence with my diabetes control at all.

It may sound silly, but since my mum isn't around to help me out and 'look after' me, i am just on-edge all the time and terrified of going hypo. I've only ever had one moderate/severe hypo which was 3 years ago during the night, where my mum was there to the rescue. But I am now constantly over-eating and not having enough insulin due to the huge fear of going hypo.. I don't mind mild hypos, 3mmol+, I can cope with those. My mind just always has catastrophic thoughts of me having a fit and an ambulance coming and me not making it etc. I am terrified to be on my own when nobody is there to help in an emergency, and i have horrible thoughts in my head of what would happen.

I got an insulin pump (accu chek aviva combo) a few months after diagnosis, which I used for 5 years. then I got rid of it for cosmetic reasons, being a teenager (which was silly of me). a week or so ago i started on an omni pod pump. It's amazing and I love it but my confidence is still rock bottom.

I over eat to avoid hypo, then go high, then correct, then get scared of going low, so i eat again... its a horrible viscous circle and it's so hard to get out of and i feel like lately my diabetes is just ruining my life and making me so sad and down. I just don't know what to do... everyone keeps saying 'it'll just take time you'll get better and get used to it' but i don't know.

Does anyone else ever feel or experience any of these things, and would anybody have any advice? I just feel so so alone and low.

 

[claire1991]

How often do you test your bloods hun?
Reason I'm asking is if you test often then you'll get to know your patterns and will learn what your bloods are doing at different times of the day and can therefore avoid the hypos.

Running yourself high isn't a good thing in the long run, as I'm sure you know

Do you know what your latest hba1c was?

Do you have a diabetes team that you see on a regular basis?

Claire x

 

[gab_07]

How often do you test your bloods hun?
Reason I'm asking is if you test often then you'll get to know your patterns and will learn what your bloods are doing at different times of the day and can therefore avoid the hypos.

Running yourself high isn't a good thing in the long run, as I'm sure you know

Do you know what your latest hba1c was?

Do you have a diabetes team that you see on a regular basis?

Claire x

I check my blood far too much during the day. it's now early afternoon and I must have checked about 6 times already... My hba1c has never been over the high limit, always good and around 7. I'm currently awaiting a hba1c result from a blood test a week or so ago.

I am at university in another town, but still go to the hospital at home for my regular check-ups.

I feel like everything is a mess at the moment...I'd love to know my patterns. I check my blood, work out the carb in my food, give insulin accordingly... then I am like oh no i am going to go hypo, so i eat more and more. then it goes high. I am not even hypo that often, it's just the fear is so much I do too much to avoid it. and when i actually am hypo, i massively over-treat. so a 3.6 hypo becomes a 18 blood glucose an hour later...

My BG's have been high these past couple of days, i think it is due to my pump, or the insulin i had in it. it wasnt coming down no matter how much correction i had. hopefully it will sort itself out soon. I've just done the over eat thing after my lunch, pushing my bg up to 17.

x

 

[richyb]

I saw a while ago a hypo alert watch which was advertised in the balance magazine think it was less than £70. This was for night time only and was supposed to wake you up if going low. I do not no if it works or how good it is as I have not tried it. Might be just a gimmick

 

[claire1991]

Seems strange that you're getting good hba1cs with the highs your describing.

You can't test too often so don't worry about that

I don't really know how to advise you because from what you've said you know what you should be doing anyway

Maybe when you're at home with your boyfriend on the evenings or weekends you could try to not over eat and see how it goes whilst you've got somebody there to build your confidence?

With your bg being high over the last few days have you changed your infusion set? Mine goes higher when it needs changing.

Claire x

 

[gab_07]

Seems strange that you're getting good hba1cs with the highs your describing.

You can't test too often so don't worry about that

I don't really know how to advise you because from what you've said you know what you should be doing anyway

Maybe when you're at home with your boyfriend on the evenings or weekends you could try to not over eat and see how it goes whilst you've got somebody there to build your confidence?

With your bg being high over the last few days have you changed your infusion set? Mine goes higher when it needs changing.

Claire x

I am not massively high all of the time, it is up and down, but balances out to give me a good hba1c, that's what i think causes it to be good anyway. It's just these past few days it has been high and not moved. Yeah, I will try and ride it out and not do anything/overeat and see what happens, hopefully ill find out that it ends up being fine and that'll reduce my anxiety.

I changed my omnipod pump last night, as i thought it might have been into a lipo or an area of bad absorption. but the high's are continuing today.. I'm wondering if i should change it all again using brand new insulin vial. As the vial i was using had been out of the fridge for a few weeks.

Thanks so much for your help,

gabrielle x

 

[gab_07]

I saw a while ago a hypo alert watch which was advertised in the balance magazine think it was less than £70. This was for night time only and was supposed to wake you up if going low. I do not no if it works or how good it is as I have not tried it. Might be just a gimmick

Hi,

Oh yeah, I have seen those advertised. I'm not entirely sure how well they work. Thank you for mentioning it though with me it seems to be more the fear of it happening, and it doesn't actually happen that often anymore...

 

[claire1991]

I'd change it if it were me hun, do as you thought and change it all. If you changed the site last night then you should definitely have noticed a difference by now.

Have faith in yourself! You sound like you know what you're doing (or should be doing)

Claire x

 

[gab_07]

I'd change it if it were me hun, do as you thought and change it all. If you changed the site last night then you should definitely have noticed a difference by now.

Have faith in yourself! You sound like you know what you're doing (or should be doing)

Claire x

I called my pump DSN and she's advised to put a +20% basal rate on for 8 hours and see how it goes. My blood was 5 at midday yesterday, and I freaked out and had fruit juice!! and it was 8.3 when i woke up this morning, so there are SOME ok levels... I am finding out my hba1c in a few moments, I'm so nervous. although my DSN has said we will get it better if it is high.

Yeah, I do think I have all the knowledge, I am just stupid sometimes and don't use it!

x

 

[himtoo]

I called my pump DSN and she's advised to put a +20% basal rate on for 8 hours and see how it goes. My blood was 5 at midday yesterday, and I freaked out and had fruit juice!! and it was 8.3 when i woke up this morning, so there are SOME ok levels... I am finding out my hba1c in a few moments, I'm so nervous. although my DSN has said we will get it better if it is high.

Yeah, I do think I have all the knowledge, I am just stupid sometimes and don't use it!

x

Hi there @gab_07
i think it is really easy to become anxious and living away from home when you have had your mum there as your safety net won't help your anxiety.
I don't think you are being stupid at all. I think you are worrying and with having a new change to your routine to cope with ( the omnipod ) and your bloods not being where you want them , you are building yourself up even more towards a panic.

so first thing is try and keep calm , slow down and realise that getting used to all your settings on your pump will take weeks ( my DSN said about 8 )

as for testing when I started on the omnipod I was testing 14 times per day -- 5 months later and I still test 9-10 times per day

 

[catapillar]

@gab_07 o my goodness please don't think you are being stupid, it's not stupid, it's fear. If I were you I would discuss with your DSN how you are feeling & your anxiety/phobia about hypos, how you feel that is impacting on you diabetes management and your life more widely. It's very likely that will get you a referral to a health psychologist who might be able to talk through your phobia and help come up with coping mechanisms so it isn't so all consuming.

Also, you might want to look into CGM because you can set them to alarm when you are dropping. The dexcom G5 can be set up to send your readings to any iPhone so it could also alert your mum & your boyfriend too, so then you wouldn't feel so alone. They are expensive, but the kind of anxiety you describe might make nhs funding more likely.

 

[gab_07]

Hi, I don't really know who to go to regarding my diabetic anxiety at the moment. I had psychiatric help via my diabetes unit in my hospital a few years back, but it wasn't to help diabetes anxiety. I am currently having Cognitive Behavioural therapy because I do have health anxiety (worrying about getting other bad illnesses!) but i don't feel like it's the place to bring up diabetes worries as the dr giving me this therapy has 0 clue about diabetes.

I have briefly mentioned my worries to my DSN, and she has just been reassuring saying its a normal thing and we will get it better. The CGM things do sound very good, and i've heard about them before, but i worry if i got one i'd become obsessive over it, you know?

Really I'm just hoping that with the effort and thought I'm putting in, everything will just get better and fall into place over the next few weeks. And instead of overeating, ride it out and see what happens. I'm terrible for trying to prevent a hypo before it happens. The other night after my evening meal, i'd just given my insulin, and 10 mins later my bg was 4. so i massively freaked out and ate soon many sweets and fruit juice, then it was 21... I don't give the sugar long enough to work because I cant deal with sitting there feeling hypo

Also, if my bg is, say, below 7, and I've given insulin that hasn't peaked yet (1hr 30 after) i panic and eat... ?

 

[himtoo]

awww.... bless
one thing that might help but is quite boring to do..............

for the next couple of weeks eating the exact same things at the same times of day in a real routine
( this was normal therapy back when i was diagnosed )

what this will do is hopefully remove a worry because you will learn how you react to the meal and if you need to tweak or not( by talking to your DSN with the results from a couple of days )

 

[azure]

@gab_07 You're definitely not being silly. Before I had my pump, I had horrendous nighttime hypos and I know too well what that fear is like.

I think you need to rationalise it and deal with it as much as you can, but get help too if you're still struggling. By 'rationalise', I mean think about your pump and how it's carefully programmed to give you very precise tiny doses of fast acting insulin as a basal. So no great load of slow acting insulin sitting in your body that may release erratically and give you a hypo. You have the best insulin delivery system to avoid that

Also, would it help if you set an alarm for the night? I know it's not exactly fun getting up in the early hours, but setting an alarm for something like 2am may help relieve your anxiety as you'll be going to bed and knowing that you'll be testing again soon so you're not going through the night "blind".

I've over treated hypos too, especially at bedtime so I understand how easy that is to do because of fear. Knowing you'll be testing in a few hours might help with that too. You might also find set hypo treatments that you know work might help you feel more confident. So if you know so many glucose tablets and half a digestive or whatever put you up enough but not too much, it might help relieve the anxiety, as you'll be doing something proven, if that make sense.

Don't be too hard on yourself. It's not easy being away from home, and particularly not if you have other things like diabetes to worry about.

 

[gab_07]

@gab_07 You're definitely not being silly. Before I had my pump, I had horrendous nighttime hypos and I know too well what that fear is like.

I think you need to rationalise it and deal with it as much as you can, but get help too if you're still struggling. By 'rationalise', I mean think about your pump and how it's carefully programmed to give you very precise tiny doses of fast acting insulin as a basal. So no great load of slow acting insulin sitting in your body that may release erratically and give you a hypo. You have the best insulin delivery system to avoid that

Also, would it help if you set an alarm for the night? I know it's not exactly fun getting up in the early hours, but setting an alarm for something like 2am may help relieve your anxiety as you'll be going to bed and knowing that you'll be testing again soon so you're not going through the night "blind".

I've over treated hypos too, especially at bedtime so I understand how easy that is to do because of fear. Knowing you'll be testing in a few hours might help with that too. You might also find set hypo treatments that you know work might help you feel more confident. So if you know so many glucose tablets and half a digestive or whatever put you up enough but not too much, it might help relieve the anxiety, as you'll be doing something proven, if that make sense.

Don't be too hard on yourself. It's not easy being away from home, and particularly not if you have other things like diabetes to worry about.

My boyfriend tries his hardest to stop me from overeating on hypos, but I'm terrible and sneakily eat more jellies and biscuits behind his back It does give me some relief etc knowing I'm on the best system for reducing hypo's though. I'm usually good at waking from hypo's during the night, it was just the one time 3 years ago, and I still have flash backs now. The testing during the night is a good idea, I usually wake often during the night, so I check it then when I can. I don't let myself go to sleep with a bg below 8.. that may be bad?

For hypo's I usually use one small juice carton, or one mini bag of haribo sweets. But I panic and combine the 2 along with a load of biscuits... I'm too impatient and don't give it long enough to work!

One of my main queries though - if anyone could help me slightly:

If you've given insulin (for food or correction), and you're nowhere near your 1-1hr 30 fast acting peak time, and your bg is low-ish, like 4 or 5. I usually freak out and eat more to prevent the hypo, but what should you actually do?

 

[himtoo]

One of my main queries though - if anyone could help me slightly:

If you've given insulin (for food or correction), and you're nowhere near your 1-1hr 30 fast acting peak time, and your bg is low-ish, like 4 or 5. I usually freak out and eat more to prevent the hypo, but what should you actually do?

for me the scenario works like this --- last night -- the example ( not brilliant because i went hypo but the thought works for what to do ) i was at home just watching television
6.5 at 6:05pm pre meal 72 carbs bolus 11.1 units
ate at 6:45pm
first post meal test at 8:10pm 4.6 - did nothing
9:00pm 4.9 -- did nothing
10:15pm 3.3 10 carbs ( fast acting ) -- note -- should have tested 20 minutes later but got watching the football
11:30pm 3.2 25 carbs ( 15 fast and 10 slow ) and off to bed


this morning at 6:30 10.7

 

[azure]

If you overeat for hypos, then something boring like glucose tablets or Lucozade is best. It's also easier to measure and less appealing to overeat. I also buy boring biscuits so I don't overdo those!

I think in answer to your question, everyone varies. So for me, if I'd eaten and then was, say 4, I'd definitely have a little mor carbs as it would be quite likely my blood sugar would go down further. I'd then test again after 30-60mins. Sometimes when I miscalculate carbs, I have to do this - test, eat a tiny bit more, test again and maybe have another half biscuit or whatever.

If I did a correction and was at 4 well before the 2 hour mark, I'd be more worried, depending on how big my correction dose was because I'd think I must have corrected too early (ie unnecessarily). So then I'd treat it more - that is, maybe have some glucose at 4 and a larger amount of carbs like a whole biscuit or more.

That's just me though. The best thing to do is learn what's normal for you so you can respond with what your body needs.

Edited to add that's why I try to test 2 hours after eating so I get familiar with what my BS is after that meal. But if I felt funny,,I'd test earlier and eat if I was too low. I think what I've noticed on the pump is that there's less leeway for overeating. On injections, it was easier to'have a bit extra' and it wouldn't have much affect, but with the tiny reservoir of pump insulin even a sneaky nibble of something carby can show up. So that should help reassure you about hypos too. You'll probably need less food to correct them on a pump.

 

[jimmax]

I have briefly mentioned my worries to my DSN, and she has just been reassuring saying its a normal thing and we will get it better. The CGM things do sound very good, and i've heard about them before, but i worry if i got one i'd become obsessive over it, you know?

Getting a CGM would be the best thing you could do! It will allow you to be obsessive without drawing attention to yourself. Being able to blood test by simply checking your receiver or mobile is the best thing that has happened for diabetics since we got blood test meters. You'll soon get your confidence back with a CGM.

If a CGM is not affordable then consider the Abbott Freestyle Libre.

I'm comfortable with being obsessive about my blood sugars. It keeps me safe and confidant.

 

[PseudoBob77]

I was diagnosed with type 1 when I was 12, and I am now 20. I am in my final year at university, which is 2 hours away from home. I have my boyfriend of 2 and a half years here with me to help me, but I have absolutely no confidence with my diabetes control at all.

It may sound silly, but since my mum isn't around to help me out and 'look after' me, i am just on-edge all the time and terrified of going hypo. I've only ever had one moderate/severe hypo which was 3 years ago during the night, where my mum was there to the rescue. But I am now constantly over-eating and not having enough insulin due to the huge fear of going hypo.. I don't mind mild hypos, 3mmol+, I can cope with those. My mind just always has catastrophic thoughts of me having a fit and an ambulance coming and me not making it etc. I am terrified to be on my own when nobody is there to help in an emergency, and i have horrible thoughts in my head of what would happen.

I got an insulin pump (accu chek aviva combo) a few months after diagnosis, which I used for 5 years. then I got rid of it for cosmetic reasons, being a teenager (which was silly of me). a week or so ago i started on an omni pod pump. It's amazing and I love it but my confidence is still rock bottom.

I over eat to avoid hypo, then go high, then correct, then get scared of going low, so i eat again... its a horrible viscous circle and it's so hard to get out of and i feel like lately my diabetes is just ruining my life and making me so sad and down. I just don't know what to do... everyone keeps saying 'it'll just take time you'll get better and get used to it' but i don't know.

Does anyone else ever feel or experience any of these things, and would anybody have any advice? I just feel so so alone and low.

It's time to take control which is why you've come to the table and shown your cards. You're 20 years old and your mother isn't responsible for you. You are responsible for you.

Our parents are there to guide us through adolescence when we are diagnosed at a young age. Statistically the transition from a teenager to a young adult as a type 1 diabetic puts us at our most vulnerable.

The great thing is you've acknowledged it, that means you want to take control. Tons of advice is available here on the forum, research into things using the trusty google. Carb count and test more, log your day with an App. A diary does help, but understanding it takes forever.

I'm 27 years into it and not one day is the same. It's not easy but i recommend to monitor it as much as possible, understand your diet more, adjust and change your eating habits if need be.

 

[TJR56]

I was diagnosed with type 1 when I was 12, and I am now 20. I am in my final year at university, which is 2 hours away from home. I have my boyfriend of 2 and a half years here with me to help me, but I have absolutely no confidence with my diabetes control at all.

It may sound silly, but since my mum isn't around to help me out and 'look after' me, i am just on-edge all the time and terrified of going hypo. I've only ever had one moderate/severe hypo which was 3 years ago during the night, where my mum was there to the rescue. But I am now constantly over-eating and not having enough insulin due to the huge fear of going hypo.. I don't mind mild hypos, 3mmol+, I can cope with those. My mind just always has catastrophic thoughts of me having a fit and an ambulance coming and me not making it etc. I am terrified to be on my own when nobody is there to help in an emergency, and i have horrible thoughts in my head of what would happen.

I got an insulin pump (accu chek aviva combo) a few months after diagnosis, which I used for 5 years. then I got rid of it for cosmetic reasons, being a teenager (which was silly of me). a week or so ago i started on an omni pod pump. It's amazing and I love it but my confidence is still rock bottom.

I over eat to avoid hypo, then go high, then correct, then get scared of going low, so i eat again... its a horrible viscous circle and it's so hard to get out of and i feel like lately my diabetes is just ruining my life and making me so sad and down. I just don't know what to do... everyone keeps saying 'it'll just take time you'll get better and get used to it' but i don't know.

Does anyone else ever feel or experience any of these things, and would anybody have any advice? I just feel so so alone and low.