# Partner of T1 - Help!?



## Cherry63 (Jan 18, 2020)

Hi everyone been married to my partner for 12 years, hes been T1 for over 40 years now. Hes struggling with all sorts of health issues as a result of the diabetes, kidneys, cholesterol, bladder issues,eyes usual stuff. But the last 3 years hes had a few serious hypos in the night, which has needed an ambulance & sometimes hospital(if not able to stabilise at home). I'm struggling to cope with the stress of them, it's so severe eg, fitting, going blue. It's always in the night.I wake up and I realise hes going hypo, sweating & twitching etc. Sometimes I catch him and the glucogel does the job, followed by food. He had one this week a couple of days ago, whilst abroad on holiday. In my opinion it was preventable. He seems blaze and complacent with his illness. I feel absolutely traumatised by what happened but hes just carrying on and looks fine now. Is there a support group for partners of T1's. My friends dont really get it. Thanks


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## trophywench (Jan 18, 2020)

Friends won't cos they aren't having to live with it Cherry and there's an end to it really.

Have you had this conversation with him - has he got the slightest clue how much he's affecting you?


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## Cherry63 (Jan 19, 2020)

I know they dont, one has seen him having a severe hypo about 2 years ago now, so sort of gets it. Up until that point he always tried to minimise ie....not had one for ages etc. After his friends seeing it he couldn't do that. Tbh, I almost left him, as it was preventable, as I found out later. Hed been out drinking with a load of friends & not eaten enough.
This time, he'd done quite a bit of exercise in the day and just not eaten enough again. I asked him at bedtime to have something to eat but he said he'd tested and he was fine. He'd been eating liquorice watching the football on tv. I've tried all sorts of tactics with him, I tell him straight what's happens each time and how it has me on pins all the time, esp after a severe hypo. I know I will calm down in time, I just dont know if I can take it anymore. I and i feel a bad person/wife for feeling this way. I do love him but I'm starting to resent him and that's not good.


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## Kaylz (Jan 19, 2020)

Does he use a Libre or another form of CGM? Is he on a pump or MDI?

You keep talking about how you think they have been preventable but you have to think of it from his point of view, he maybe thinks he has taken enough carbs on board to keep him safe without swinging too high and it just isn't, hypo's can happen for no reason and have no rhythm at times, has he basal tested to make sure his dose is right? Not every hypo is going to be preventable and while I see how you may be feeling you have no idea how he might be feeling as men certainly aren't the best at talking about that kind of stuff


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## Docb (Jan 19, 2020)

Hi Cherry.  I don't know if it has occurred to you but you have another role in your life, that of carer.  I raise this because getting yourself registered into the carers system might find you some of the support you need.  It might also jolt your other half into getting his act together.  Just a thought.


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## everydayupsanddowns (Jan 19, 2020)

Hello @Cherry63 

Welcome to the forum, and so sorry for the situation you find yourself in. Hopefully by keeping the likes of communication open, and with a bit of support (for both of you) you will be able to successfully resolve this. I have some sympathy with your situation, because I am ashamed to say that I put my late wife through several years of recurrent severe hypos overnight for years. Though the first time I needed to go to hospital really made me have a rethink about how I was dealing with my diabetes - and was part of the reason I joined here. 



Cherry63 said:


> Up until that point he always tried to minimise ie....not had one for ages etc.



This is painfully familiar, but there I don’t think he is just being difficult, it is also that the brain, including the memory function, is significantly affected by severe hypos. It is likely that he will have little, if any, memory of the event itself - almost dreamlike. He might have a sense of it having happened by your reaction and memories of coming around, but not of the distressing nature of the event itself. I usually underplayed both the frequency and severity of my severe overnight lows. Research also shows that repeated severe lows effect the ‘aversion’ response that the event usually creates. People begin to normalise them, and no longer see them as being as significant and important to avoid as they actually are. 



> After his friends seeing it he couldn't do that. Tbh, I almost left him, as it was preventable, as I found out later. Hed been out drinking with a load of friends & not eaten enough.


I am beginning to wonder about the level of support and information that your bloke has been given over the years. Alcohol is a tricky beast to manage alongside insulin and T1 - especially if you’ve had more than just a couple. Initially there can be a big BG spike if drinking beer or cider, but then the alcohol prevents the liver from trickling out glucose as it usually does so BG can crash, especially overnight when the body usually reduces cortisol/glucose output at around 3am. Plus you are less clear thinking, so less likely to spot BG dropping. If I’ve had more than a couple of pints I usually find it important to set an overnight alarm so that I do a quick BG check for safety. Especially as I’m now sleeping on my own. 



> This time, he'd done quite a bit of exercise in the day and just not eaten enough again. I asked him at bedtime to have something to eat but he said he'd tested and he was fine. He'd been eating liquorice watching the football on tv. I've tried all sorts of tactics with him, I tell him straight what's happens each time and how it has me on pins all the time, esp after a severe hypo. I know I will calm down in time, I just dont know if I can take it anymore. I and i feel a bad person/wife for feeling this way. I do love him but I'm starting to resent him and that's not good.



Yup. You were right, exercise (especially in the evening) is another fairly high risk event. The effect of exercise can continue for 12-24hours after the activity, and reduction in insulin or top-up carbs are a good idea. 

Has your husband ever been to anything to learn about the new, more flexible and precise ways of managing diabetes around food, carbs, exercise, alcohol and illness? Things like DAFNE have a great reputation for reducing hypos and improving quality of life. 

Finally I would just offer this glimmer of hope. At one stage about 10 years ago I would have been having probably a dozen, maybe more, occasions in the year when Jane would have to ‘bring me round’ in the morning. At the time I would have estimated it as ‘about once every 6 months’ (that’s how far off my appreciation was) but I’ve not had any AT ALL for the past 7 or 8 years. All it took was me finally understanding that I wasn’t quite as good as managing my diabetes as I was telling myself, and that my ‘good’ HbA1c wasn’t everything. 

Jane wrote this on our family blog at the time: 
https://www.everydayupsanddowns.co.uk/2011/02/at-risk-of-sounding-like-grandma-walton.html


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## Toucan (Jan 19, 2020)

Hello Cherry, welcome from me as well.
As you can see from the replies, you have come to a good place to find knowledge and support.
It is a very difficult situation to not only have to cope with your husband's illness, and still try an keep your relationship together.
I think Docb's advice about registering as a carer could be a route through.
I did this when I was caring for my mother, and through that found a local carers support group that helped me a lot.
As I have just said to another member though,try to find some time to relax and rest yourself, so that you have the strength and reserves to help your husband, 
I've heard it called 'air hostess syndrome', - Always put your own mask on first, or you won't be able to help others.


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## Cherry63 (Jan 19, 2020)

Kaylz said:


> Does he use a Libre or another form of CGM? Is he on a pump or MDI?
> 
> You keep talking about how you think they have been preventable but you have to think of it from his point of view, he maybe thinks he has taken enough carbs on board to keep him safe without swinging too high and it just isn't, hypo's can happen for no reason and have no rhythm at times, has he basal tested to make sure his dose is right? Not every hypo is going to be preventable and while I see how you may be feeling you have no idea how he might be feeling as men certainly aren't the best at talking about that kind of stuff





Toucan said:


> Hello Cherry, welcome from me as well.
> As you can see from the replies, you have come to a good place to find knowledge and support.
> It is a very difficult situation to not only have to cope with your husband's illness, and still try an keep your relationship together.
> I think Docb's advice about registering as a carer could be a route through.
> ...



Hes recently changed to a libre sensor in the last few months, and he loves it. It's so easy he has back up blood testing kit too. Problem is he doesnt think his day through in the eve, what hes eaten, done etc. I'm on a diet at the mo, after xmas and he eats my meals which is very supportive but I've told him he cant eat like me and needs extras. I've said thus over & over. But he ate liquorice while watching tv before bed, which would give a false high reading. I even said at bedtime I dont think you've eaten enough etc but he didnt take me on. It's the carelessness I can cope with! I know sometimes hypos happen and you dont know why but sometimes it's very obvious! I'm not diabetic but I knew he'd done a lot of walking that day and hadn't had a big enough tea. He manages his own insulin pens & doses. I know he feels bad but I honestly feel hes being blaze about it. These really  bad hypos never happen when hes alone & he has been a lot before we got married. He has no idea what's happened, as hes out of it...he cant understand why I feel so anxious for days/ weeks afterwards.


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## Thebearcametoo (Jan 19, 2020)

It’s not about not eating enough. It’s about matching his insulin to his food. Is he carb counting and adjusting his insulin accordingly? 


Please have a chat with your GP/nurse practitioner about what support there is available for you. Seeing someone be ill enough to require an ambulance one multiple occasions is scary and can cause you to then be hyper aware even in times when there isn’t the necessity (I’m not saying you over react or anything like that just that you will be in a state of hyper vigilance and that takes a toll on your health and mental well-being). 

One of the hard part of being a carer is allowing the person you’re caring for to maintain their autonomy. It sounds like he could use a little refresh on how best to manage his diabetes and it may help for you to take one of the online courses so that you have a full understanding of diabetes. When you enter a relationship with someone who already has a chronic condition you miss out on the diagnosis and education stage (and lots has changed since he was diagnosed). 

I would encourage you to get some counselling as a couple too. Your concerns for him are valid and need acknowledgment. His relationship with his diabetes is his and he may not think about how it affects you and being able to discuss that between you may end up falling into a pattern of him feeling like he’s being nagged or you’re being dramatic and you feeling like he’s being needlessly reckless. It may be that with a third party being able to help you listen to each other that you can find a way through. You may find that he’s depressed or being deliberately reckless or you may find he’s really unaware of how his management of his diabetes is causing both of you issues. 

Don’t try to do it all alone. Lean on your support networks including us. And I hope his night time hypos are less severe. The


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## Kaylz (Jan 19, 2020)

@Cherry63 if he's on a basal/bolus regime then there isn't any reason he should need any extra to eat, he just needs to match the insulin to the carbs, there are a few Type 1's that have adopted quite a low carbohydrate lifestyle since being diagnosed, if extra exercise its easy worked around by reducing bolus doses etc, I'm not quite sure what you mean by eating the liquorice would've produced a false high reading


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## Cherry63 (Jan 19, 2020)

Thebearcametoo said:


> It’s not about not eating enough. It’s about matching his insulin to his food. Is he carb counting and adjusting his insulin accordingly?
> 
> Thankyou, I understand everything you've said here and yes I think I am hyper vigilant sometimes and do nag. I'm terrified I'm going to get it wrong one day. There seems to be no support ou there for partners! Friends and family dont fully understand.
> 
> ...


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## Cherry63 (Jan 19, 2020)

Kaylz said:


> @Cherry63 if he's on a basal/bolus regime then there isn't any reason he should need any extra to eat, he just needs to match the insulin to the carbs, there are a few Type 1's that have adopted quite a low carbohydrate lifestyle since being diagnosed, if extra exercise its easy worked around by reducing bolus doses etc, I'm not quite sure what you mean by eating the liquorice would've produced a false high reading


Sorry I mean the liquorice would have caused a spike in the reading but he needed something more long acting to see him through the night, if that makes sense?
No he doesn't carb count at all, he uses lantus as a bolus at night and humalog through the day after meals. Tbh, I'm at my wits end with it all!!


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## Cherry63 (Jan 19, 2020)

Docb said:


> Hi Cherry.  I don't know if it has occurred to you but you have another role in your life, that of carer.  I raise this because getting yourself registered into the carers system might find you some of the support you need.  It might also jolt your other half into getting his act together.  Just a thought.


Thankyou,  no I've never really thought about the fact that I am a carer for him at times. What carers registration do you mean?


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## rebrascora (Jan 19, 2020)

Kaylz said:


> I'm not quite sure what you mean by eating the liquorice would've produced a false high reading


Kaylz, I am guessing she means that the liquorice will spike his BG so that it is high at the point when he checks it to go to bed but then it will tail off quite quickly compared to more complex slow releasing carbs and potentially leave him low in the night.


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## Cherry63 (Jan 19, 2020)

everydayupsanddowns said:


> Hello @Cherry63
> 
> Welcome to the forum, and so sorry for the situation you find yourself in. Hopefully by keeping the likes of communication open, and with a bit of support (for both of you) you will be able to successfully resolve this. I have some sympathy with your situation, because I am ashamed to say that I put my late wife through several years of recurrent severe hypos overnight for years. Though the first time I needed to go to hospital really made me have a rethink about how I was dealing with my diabetes - and was part of the reason I joined here.
> 
> ...


Ok thankyou fir your thoughts, its given me something to think about. I think he needs to refresh his knowledge but he dorsnt think he needs to. Things have moved on tremendously since he was diagnosed 40 years ago and treatments/ diets have moved on. I try to support but he seems not to want to re educate himself I'm afraid. Often the nurses you speak to aren't as up to speed on T1.


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## Kaylz (Jan 19, 2020)

rebrascora said:


> Kaylz, I am guessing she means that the liquorice will spike his BG so that it is high at the point when he checks it to go to bed but then it will tail off quite quickly compared to more complex slow releasing carbs and potentially leave him low in the night.


yes but it would only tail off if he'd covered it with fast acting OR if he's on too much basal and that's pushing him down, there was no mention of whether he'd injected for the liquorice hence why it  wasn't clear


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## Kaylz (Jan 19, 2020)

Cherry63 said:


> Sorry I mean the liquorice would have caused a spike in the reading but he needed something more long acting to see him through the night, if that makes sense?
> No he doesn't carb count at all, he uses lantus as a bolus at night and humalog through the day after meals. Tbh, I'm at my wits end with it all!!


that's true to a point but only if he'd taken insulin for the liquorice or if his lantus is too high a dose, he really should perform a basal test and learn carb counting, without carb counting its very possible his hypo's aren't unavoidable as he isn't covering a certain amount of carbs with a certain amount of units so it could be not enough or too much insulin, lantus is his basal and Humalog would be bolus


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## rebrascora (Jan 19, 2020)

Hi and welcome from me too.
I was on a DAFNE course in October and there was a lady on the course who had been diabetic for 40 years and she too was experiencing regular night time hypos, which often required assistance from her family and occasionally paramedics and like you her family were traumatised and suffering, including her daughter, who I think may have been instrumental in pushing for her to get help. She too seemed to be quite blasé about the hypos and had a much greater fear of being too high, as this was something which was particularly stressed when she was fist diagnosed as a young person due of course to the risk of complications.... but she could not see how her severe and regular hypos were posing a more obvious risk than the risk of complications, having spent 40 years trying to prevent her readings being too high. Of course her HbA1c results has always been good because those hypos were cancelling out any higher readings so the Diabetic clinic were not showing any concern, which reinforced her view that all was OK and she was doing well.
The DAFNE course highlighted a couple of issues which improved her control enormously but she has since got Freestyle Libre and is soon to be getting a pump, both of which will improve her control further and give her family some peace of mind.
I would highly recommend discussing a DAFNE (Dose Adjustment For Normal Eating) or whatever your local equivalent is. One of the benefits of the course is that you mix with other Type 1s and learn how people experience different issues with it their management of it and even develop a support network through it as a result. I am texting a member of my group as I type this, exchanging results and experiences as to how we are getting on and arranging to meet up for a coffee and chat next week so that we can compare notes and perhaps help each other by suggesting different tricks/tactics based on what we learned on the course. There is also the opportunity for input from partners one morning of the DAFNE course which helped all of us to understand how our diabetes affects our loved ones as well as teaching them how to treat a bad hypo. The majority of the course is about carb counting and learning to review and adjust insulin doses to cope with nor only food but also exercise, alcohol and illness. It is a really comprehensive course and the educators are trained to be really non judgemental and teach people how to be safe whatever life choices they make.

As regards his insulin regime it is usual to inject bolus insulin before the meal rather than after and the timing pre meal can make a considerable difference and can vary depending on the time of day, so for me, it is about an hour in the morning, but about 20 mins for lunch and dinner. I am one of those people who follow a low carb diet to help manage my diabetes and it does reduce the risk of highs and lows because if I miscalculate my insulin it is only ever likely to be by one unit and I usually have no more than 5 units with a meal but sometimes just 1 or 2. It is quite a good way of eating for weight loss too if that is your current goal and he is eating with you, but he would need to learn to carb count first so that he reduces his insulin as he reduces his carbs.

PS. I would be encouraging him to have some cheese and biscuits before bed rather than sweets if he is low.


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## rebrascora (Jan 19, 2020)

@Kaylz I think the problem is that he isn't carb counting and may have been eating the liquorice because he is eating diet food with the OP and needed to top up his carbs to use up the insulin he had used, instead of reducing his insulin dose. And of course the carbs from the liquorice will hit the blood stream quickly and show him to be at a reasonable level to be safe to go to bed when in fact he wasn't.


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## everydayupsanddowns (Jan 19, 2020)

rebrascora said:


> @Kaylz I think the problem is that he isn't carb counting and may have been eating the liquorice because he is eating diet food with the OP and needed to top up his carbs to use up the insulin he had used, instead of reducing his insulin dose. And of course the carbs from the liquorice will hit the blood stream quickly and show him to be at a reasonable level to be safe to go to bed when in fact he wasn't.



I agree. If not carb counting, then having Libre will allow you to be reactive to BGs that have already happened, but it’s much harder to be proactive and to prevent wild swings in BG from happening in the first place.

There are apps and meters these days that can really help with the maths of it @Cherry63 and really reduce the faff of it (which can be a hurdle to overcome after 40 years of not having adjusted each dose based on the food being eaten). In my opinion, the truth is that he always needed to be carb counting, and should have been told how to do this at the very beginning. 

Diabetes is challenging enough when estimating the balance between food and insulin (and activity, alcohol, illness etc) by counting carbs, but it is SO much harder when just injecting a dose eating ‘some food’ and waiting to see what happens.

Gut instinct is an important part of diabetes management... but it works much, much better on a basic framework of carbs:insulin adjustment. 

The apps and meters also often give an estimate of ‘insulin on board’... how much insulin is likely to still be active at a certain point, which can really help in assessing BG after eating, or especially before bed. 6.0 might be fine to go to sleep on... but 6.0 with 3 units of insulin active needs attention, or you are heading for hypoville in the early hours!


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## rebrascora (Jan 19, 2020)

I should say that if he decides to start injecting before food rather than after,  it would be a good idea to start just before he eats and let his Libre guide him as to if he can extend that to a few minutes or longer.... the Libre will show when the carbs from the food hit his bloodstream (although there is a 10 min delay between BG reading and libre because it measures interstitial fluid) and when the insulin starts working, so that if he gets a high spike after he eats and then it slowly comes down he could inject sooner and wait 5-10 mins before the next meal and see if that reduces the spike and then try maybe 20 mins next time if he is still getting a spike..... Libre is such a wonderful tool.


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## Cherry63 (Jan 19, 2020)

Thanks for all of your advice, I will speak with him about that course  & carb counting and see what we can do locally. I think we both need some re education and maybe some counselling because this cant carry on. Its driving a wedge between us.

Thankyou so much x


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## everydayupsanddowns (Jan 19, 2020)

Cherry63 said:


> Thanks for all of your advice, I will speak with him about that course  & carb counting and see what we can do locally. I think we both need some re education and maybe some counselling because this cant carry on. Its driving a wedge between us.
> 
> Thankyou so much x



Best wishes to both of you. I really hope you find your way through this, and can look back in the future and see this as a positive moment where things really changed for the better for you both.

“I knew it then, and I still believe,
That your love is no good if the road is too easy”
David Ford, What’s not to love


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## trophywench (Jan 19, 2020)

I'd had T1 for over 35 years when I was offered 'carb counting and dose adjustment' training - and hell - it literally DID change my life.  It ALL made total sense to me - no more guesswork - that had always seemed a bit strange in this day and age though it wasn't years ago when I was diagnosed, it was just something the patient had to accept so the easiest thing was to accept it.  So I did and my first husband like you and Mike's late wife just had to try to sort me out or ring 999.  I regularly woke up in the local A&E thinking, what's going on, we don't have a pegboard ceiling or strip lights ……. ooh botheration - not AGAIN!

Instead of guessing - use LOGICAL mathematics.

Huge relief !  And vast improvement in control - what's not to like?

I did have great difficulty accessing this education - as long as our kidneys haven't failed, our eyes can still see and we've had no amputations - our medics be they hospital ones or at the GP surgery ASSUME we must know everything.  Well - many of us don't! but - we are NEVER too old to learn!


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## Docb (Jan 19, 2020)

Cherry63 said:


> Thankyou,  no I've never really thought about the fact that I am a carer for him at times. What carers registration do you mean?



Carers support is provided by your local authority often through outside agencies.  The way in might be through local social services or by self referral.  If you are accepted as a carer, and I think you should be because in the event of a hypo your husband could not cope without you, then you will get a carers assessment with a professional who will help you think through things. They should also have knowledge of what is available in your area to get some peer support.   Most doctors surgeries will carry leaflets about carers support and how it works in your area.  Alternatively you could look up carers support on your local authority web site.  Might not be for you but it is worth a phone call to find out.


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## rebrascora (Jan 19, 2020)

And just to clarify, your husbands Diabetic nurse should be able to refer him onto a DAFNE course or their equivalent. DAFNE is a week long course although I think some places they may split it into 1 day a week for 5 weeks.


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## Cherry63 (Jan 21, 2020)

everydayupsanddowns said:


> I agree. If not carb counting, then having Libre will allow you to be reactive to BGs that have already happened, but it’s much harder to be proactive and to prevent wild swings in BG from happening in the first place.
> 
> There are apps and meters these days that can really help with the maths of it @Cherry63 and really reduce the faff of it (which can be a hurdle to overcome after 40 years of not having adjusted each dose based on the food being eaten). In my opinion, the truth is that he always needed to be carb counting, and should have been told how to do this at the very beginning.
> 
> ...


Thanks for that can you give me an idea of the sort of apps meters you're talking about. That sounds very useful. I've registered with the learning zone and will do.some of the modules to.update myself. I've looked at the DAFNE courses locally. Ive asked him to make an appointment to see what support he can be referred to. Things need to change now to move on.


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## Kaylz (Jan 21, 2020)

@Cherry63 the Accu-Chek Aviva Expert is a good meter that has a bolus calculator on it, they will only be available from a DSN until December, they are only VERY useful when you have an insulin to carb ratio established though as it uses the sensitivity against your current reading and the carbs your about to consume to calculate a dose,  I think the Libre meter also has a bolus calculator xx


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## Cherry63 (Jan 21, 2020)

Kaylz said:


> @Cherry63 the Accu-Chek Aviva Expert is a good meter that has a bolus calculator on it, they will only be available from a DSN until December, they are only VERY useful when you have an insulin to carb ratio established though as it uses the sensitivity against your current reading and the carbs your about to consume to calculate a dose,  I think the Libre meter also has a bolus calculator xx


Ok thanks, I will show this to my husband, it all feels a bit boggling for me at the mo. I thinks young to have to be a step at a time. But at least at the moment hes saying things need to change. I just hope it's not lip service and his words turn into action this time. I've heard it all before I'm afraid. I'm happy to do my bit but if he doesnt, I dont see what else I can do


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## everydayupsanddowns (Jan 23, 2020)

Cherry63 said:


> Thanks for that can you give me an idea of the sort of apps meters you're talking about. That sounds very useful. I've registered with the learning zone and will do.some of the modules to.update myself. I've looked at the DAFNE courses locally. Ive asked him to make an appointment to see what support he can be referred to. Things need to change now to move on.



Sounds very positive Cherry.

For BG meters, the Freestyle Insulinx and Libre handsets both offer bolus advice.

I think there are several apps, but the one I know about is mySugr, which has a bolus wizard in it somewhere.

quite often it’s helpful to get these set up with the help of a DSN. Just to make sure they aren’t going to give massively inappropriate suggestions.


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## Cherry63 (Jan 24, 2020)

Ok thanks for that, any ideas and tips are welcome.
 He said hes going to ring to make a review appointment to discuss a few different things maybe carb counting course, advice on meters, apps. I checked the DAFNE courses, they sound brilliant but our authorities dont do them. I asked him to ask about an emergency glucagon injection kit for me to use in a severe hypo scenario (like last thursday) I asked him about this 2 years ago when the last really bad one happened....but nothing! I dont go to all his appointments because hes an adult! But ones I have attended he tends to underplay things a lot. All they seem interested in is the hba1c etc. He says hes got some hypo awareness but from my experience, its next to nothing. Hes resistant to doing his own research, I've sent him links to stuff I've read and he doesnt look at them. Hes not very pro active I'm afraid, I'm finding it increasingly frustrating. Cheers


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## Toucan (Jan 24, 2020)

Hello Cherry,
it sounds as if things are still being very difficult for you.
Maybe it is time for you to have an appointment with the GP either with him or without him, so that they become more aware of his condition, and also the effect it is having on you.
In an earlier message I think you asked about how to get to register as a carer. I think the access may be via the GP, at my surgery there are leaflets on how to do this. It may be appropriate but as @Docb says discussion about this may help your husband understand the seriousness of its situation and the impact on you,


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## Cherry63 (Jan 24, 2020)

Thanks I'm going to do all those things for myself. I'm going to see what actions he does now for himself. If hes taking things seriously he will make changes/take some action. He knows how I feel, I've sent him information and links to things on diabetes uk. I've even shown him that I've registered on this forum and some of the earlier thread. I cant be any plainer, You can lead a horse to water but cant make him drink can I


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## Thebearcametoo (Jan 24, 2020)

Couples counselling is usually through Relate and it can be a bit hit and miss as to how good it is (plus it depends if you both want to resolve issues). Costs vary depending on your circumstances. It’s possible for you to go alone if he won’t engage. But if that was the case then getting some help via the NHS or MIND may be better for you. 
I hope he hears your concerns and starts to take some more responsibility for his actions.


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## grovesy (Jan 24, 2020)

Cherry63 said:


> Ok thanks for that, any ideas and tips are welcome.
> He said hes going to ring to make a review appointment to discuss a few different things maybe carb counting course, advice on meters, apps. I checked the DAFNE courses, they sound brilliant but our authorities dont do them. I asked him to ask about an emergency glucagon injection kit for me to use in a severe hypo scenario (like last thursday) I asked him about this 2 years ago when the last really bad one happened....but nothing! I dont go to all his appointments because hes an adult! But ones I have attended he tends to underplay things a lot. All they seem interested in is the hba1c etc. He says hes got some hypo awareness but from my experience, its next to nothing. Hes resistant to doing his own research, I've sent him links to stuff I've read and he doesnt look at them. Hes not very pro active I'm afraid, I'm finding it increasingly frustrating. Cheers


Some areas have their own version of the DAFNE and called by local names.


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## Cherry63 (Jan 24, 2020)

Thebearcametoo said:


> Couples counselling is usually through Relate and it can be a bit hit and miss as to how good it is (plus it depends if you both want to resolve issues). Costs vary depending on your circumstances. It’s possible for you to go alone if he won’t engage. But if that was the case then getting some help via the NHS or MIND may be better for you.
> I hope he hears your concerns and starts to take some more responsibility for his actions.



Yes thanks for that, I've looked at relate already and can see the costs involved. We asked for counseling a few years ago because of sex issues/problem all related to the diabetes. We were told he could have counselling but not including me!  I've not asked at the drs about counselling but I will do. Hes rung the diabetic team today and they can't fit him untill June! Even though hes recently had a hypo that was life threatening and needed medical intervention! Hes going to go to the diabetic drop in clinic to see if they can do anything. Thanks for your suggestions.


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## Cherry63 (Jan 24, 2020)

grovesy said:


> Some areas have their own version of the DAFNE and called by local names.



Ok thanks didnt realise that. Hes rang the diabetic team this morning and they cant fit him in till june at the quickest. Hes going to try the drop in clinic, see if they can do anything. Thanks


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## rebrascora (Jan 24, 2020)

Hi again.
Just wondering...does he drive? I wonder if he realises that these incidents seriously jeopardise his driving licence. Sometimes that can be more of an incentive to take action than more fuzzy things like relationship problems, which are not so black and white. I am not saying that your relationship is less important but I think he may see it as a fairly safe issue even though you feel it could cause a split, but the guidelines for DVLA are pretty cut in stone and whilst he might decide to lie about it on his application form, there is the potential for a doctor to advise revoking his licence providing they have evidence and it sounds like he might be getting close to meeting that criteria if paramedics are being required.

Just thinking you might use that argument to help encourage him to get help and gain more control.


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## Cherry63 (Jan 24, 2020)

rebrascora said:


> Hi again.
> Just wondering...does he drive? I wonder if he realises that these incidents seriously jeopardise his driving licence. Sometimes that can be more of an incentive to take action than more fuzzy things like relationship problems, which are not so black and white. I am not saying that your relationship is less important but I think he may see it as a fairly safe issue even though you feel it could cause a split, but the guidelines for DVLA are pretty cut in stone and whilst he might decide to lie about it on his application form, there is the potential for a doctor to advise revoking his licence providing they have evidence and it sounds like he might be getting close to meeting that criteria if paramedics are being required.
> 
> Just thinking you might use that argument to help encourage him to get help and gain more control.



Yes I've mentioned the DVLA to him as a consequence. I left that with him for a few days. I didn't realise that the dr might take it out of his hands. If loosing his licence is the thing that spurs him into action, so be it.


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## Mel W (May 4, 2020)

This is a very belated response to Cherry63's message but I just wanted to say thank you Cherry. This is the first time I've ever heard anyone say anything like I feel. I have been with my partner for 20 years, he is a T1, and has been for 30 years. I am at the end of my tether with trying to care for him through hypos that leave me in bits and my young daughters traumatised. He uses Dexcom and a pump and it is better than when we first got together and a lot of time is controlled. But we've still had two massive hypos in the last six weeks, resulting in paramedics coming, plus lots of low blood sugars like last night. He is a full foot taller than me and gets violent in hypo which means I have to restrain him as the paramedics can't, and even with low blood sugars will say mean things. My daughter was so worried last time she threw up with the stress. I cannot show any frustration at all during low blood sugar or hypo because that makes him worse. I am exhausted with this and I know everyone with T1 here will immediately say - as he does - that I don't know what it's like to have this condition and I know I don't and I feel guilty for even complaining. But for 20 years I have not been able to say how I feel to live with someone I have to watch over constantly and monitor. He says rightly he is not able to have a drink and party like anyone else. But neither can I, because even if I do I'm the one who has to be ready to call 999. Sorry been up since 4 with the latest mini-hypo so a bit overwhelmed. None of my friends have every seen him have a very bad hypo because they happen mainly at night so there is no one I can talk to.


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## everydayupsanddowns (May 4, 2020)

Really sorry to hear what you are going through as a family @Mel W 

Unfortunately Cherry hasnt visited the forum since Feb so may not pick up your response, but I just wanted to thank you for sharing your story, and hope the forum can help you and your partner work through this.

I have been where your partner is, living with and normalising far too much hypoglycaemia, including severe hypos. Looking back I am utterly ashamed of what I put my late wife through for probably 5-10 years of our marriage.

But I couldn’t see it at the time. I had normalised my experience, and had no contact with others living with T1 to act as a benchmark. Being hypo like that blanks your memory - he won’t remember them all like you do because he’s not really there. So his estimation of frequency will be a fraction of yours. I would guess he dips below 4 most days. Possibly several times a day. Then has whole days running in double figures, gets frustrated and overreacts. If he’s anything like me he probably knows he’s always preferred to run on the low side (lows are faster to ‘fix’ and invilve eating something tasty). He probably thinks it will help avoiding long-term complications... But what it took me years to realise is that _Impaired Awareness of Hypoglycaemia_ *IS* a long term complication of T1 - and it’s a devastating one every bit as much as eye, heart or kidney problems.

It sounds like your partner is willing to try, and has access to some great tools... but that there is a genuine challenge around his thinking about hypos and their impact in those around him. There are specific courses and resources that can help, including an ongoing clinical trial that I am involved in called HARPdoc, which could provide exactly the support your partner needs once the trial concludes.

Change is possible. He can reset the way he approaches his diabetes management. For me the catalyst was having to go to A&E for the first time ever in my ‘diabetes life’. But now, approx 10 years later I haven’t had a severe hypo for about 8-9 years.

Jane wrote this about a year after I’d started rethinking my diabetes:





						At the risk of sounding like Grandma Walton
					

Because no two days with type 1 diabetes are the same. Except when they are. The ups and downs of life with T1D.




					www.everydayupsanddowns.co.uk
				




Alas she never got to be the ‘happy pensioner’ she had always wanted to become.


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## brisr949 (May 4, 2020)

Im sorry if this sounds blunt, but reading through this i think the partners are being a bit selfish. 
It sounds to me like your not their partner but their carer and they know your there to pick up the pieces.
Cherry mentioned that her OH was not like it when he lived alone, of course he wasnt because he couldn't..i live alone and have to be more aware of hypos and although the occasional hypo does happen most of what your OH has are preventable just by taking more responsibility for their own actions. 
I really hope he gets the support he needs and changes his life for the better, for both of you.


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## Cherry63 (May 4, 2020)

Mel W said:


> This is a very belated response to Cherry63's message but I just wanted to say thank you Cherry. This is the first time I've ever heard anyone say anything like I feel. I have been with my partner for 20 years, he is a T1, and has been for 30 years. I am at the end of my tether with trying to care for him through hypos that leave me in bits and my young daughters traumatised. He uses Dexcom and a pump and it is better than when we first got together and a lot of time is controlled. But we've still had two massive hypos in the last six weeks, resulting in paramedics coming, plus lots of low blood sugars like last night. He is a full foot taller than me and gets violent in hypo which means I have to restrain him as the paramedics can't, and even with low blood sugars will say mean things. My daughter was so worried last time she threw up with the stress. I cannot show any frustration at all during low blood sugar or hypo because that makes him worse. I am exhausted with this and I know everyone with T1 here will immediately say - as he does - that I don't know what it's like to have this condition and I know I don't and I feel guilty for even complaining. But for 20 years I have not been able to say how I feel to live with someone I have to watch over constantly and monitor. He says rightly he is not able to have a drink and party like anyone else. But neither can I, because even if I do I'm the one who has to be ready to call 999. Sorry been up since 4 with the latest mini-hypo so a bit overwhelmed. None of my friends have every seen him have a very bad hypo because they happen mainly at night so there is no one I can talk to.



Hi Mel, so sorry to hear about your experiences with a diabetic partner. I I totally understand your feelings, a mixture of stress, guilt and hyper vigilance. You also have the extra worries around your young child to contend with.
Yes, as partners, we dont know what it feels like to be a diabetic and have a hypo but equally they dont know what it's like to witness it and have to go from a sleeping state to life saver in seconds! The aftermath of those situations physically and mentally are very difficult for both people but in very different ways. In my experience, there is a lot of support for the diabetics, and parents of diabetic children, which is absolutely right. BUT there isn't  much support for adult partners!! I have approached diabetes uk about this and am still waiting for a reply. I think adult partners need their own private forum. Here they can discuss their experiences and feelings openly without guilt/judgement with other partners that understand this situation. Friends and family will try & support you but unless you live it, it's hard to understand. I think you need to be honest with yourself and get some counselling. I know that is very difficult in the current situation but you need to 'care for the carer' which is you! Lots of love xxx


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## Mel W (May 4, 2020)

Hi Mike
First, thanks so much for your kindness in replying to my message. It was really nice of you to do so so swiftly. I was very moved by Jane's blog too and am so sorry she never got to become that 'happy pensioner '. Thank you also Cherry for coming back to the forum and to brisr949. Both your comments have made me feel less alone.
Like Cherry, I too would be grateful for a forum for adult partners because I have no idea what is normal or not or how to deal with stuff - or even just to share a rueful joke about the situation we find ourselves in. 
Mike you are absolutely on the money; my partner prefers to run low to avoid complications (he has been very fortunate so far as he has not had any major ones despite having had T1 for so long) so he will often be below 4, and then spike up. 
I am however slightly gobsmacked Mike that you said you've only been to A&E once in your diabetic life and it caused you to change. It was a regular part of our lives when he was younger - I think I've seen a lot of London A&E teaching hospitals. I just presumed that was what T1 diabetes was like. Now it is much better and we once had the best part of a year without calling paramedics but that was an aberration. 
Cherry I feel tremendous guilt, I don't have to live with this condition, I feel awful for him having it, and I don't want him to feel bad for something he cannot help. But never being able to relax, always knowing that I may be called on at a moment's notice, and keeping my kids calm and not stressed is really taking its toll on me after all this time. And you can't talk to anyone else because it's so difficult to explain (without sounding really horrible and selfish).
brisr949 as someone who lives with T1 thanks for your comments too. It's good to hear that people have worked out different ways of managing T1 and yes I do often feel he knows I'm there to pick up the pieces....


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## SB2015 (May 4, 2020)

Mel W said:


> This is a very belated response to Cherry63's message but I just wanted to say thank you Cherry. This is the first time I've ever heard anyone say anything like I feel. I have been with my partner for 20 years, he is a T1, and has been for 30 years. I am at the end of my tether with trying to care for him through hypos that leave me in bits and my young daughters traumatised. He uses Dexcom and a pump and it is better than when we first got together and a lot of time is controlled. But we've still had two massive hypos in the last six weeks, resulting in paramedics coming, plus lots of low blood sugars like last night. He is a full foot taller than me and gets violent in hypo which means I have to restrain him as the paramedics can't, and even with low blood sugars will say mean things. My daughter was so worried last time she threw up with the stress. I cannot show any frustration at all during low blood sugar or hypo because that makes him worse. I am exhausted with this and I know everyone with T1 here will immediately say - as he does - that I don't know what it's like to have this condition and I know I don't and I feel guilty for even complaining. But for 20 years I have not been able to say how I feel to live with someone I have to watch over constantly and monitor. He says rightly he is not able to have a drink and party like anyone else. But neither can I, because even if I do I'm the one who has to be ready to call 999. Sorry been up since 4 with the latest mini-hypo so a bit overwhelmed. None of my friends have every seen him have a very bad hypo because they happen mainly at night so there is no one I can talk to.


I am glad that you have found the forum Mel.
As @Cherry63  says although we know what it is like to have a hypo, we do not know what it is like to be the partner watching this.  I hope that the responses are helpful and do come back with any specific questions.  It does sound like your partner has not yet accepted the limitations that T1 imposes, and needs to star to manage his levels more.  The technology available can provide a lot more information now and this should make things easier, but they do all take a bit of work to make use of the informations they give.
Keep in touch.


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## Mel W (May 4, 2020)

I think you are right SB2015 and I fully understand how frustating it is as T1 to feel these restrictions - even down to having to eat when you don't want to because you are low....I suppose what I end up feeling is that he doesn't realise (or doesn't want to realise) is that there are also restrictions on our lives as well. Of course these are nothing compared to what he undergoes but can still have an impact on us.


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## brisr949 (May 4, 2020)

Sorry being so blunt has played on my mind so i apologise if it was too frank.
I really do hope that you get the appreciation you both deserve as they may not realise how fortunate they are for having you there.
I'd give up my right arm to be in that position. 
Hugs to you both.
Adam.


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## trophywench (May 4, 2020)

At one time, I reckon all A&E Depts had pegboard ceilings BUT it's been a good many years since I woke up in one.

Some of us old uns chose to educate ourselves, cos we were worried about ourselves too!  hence why we don't know A&E so well these days!

Your man is NOT normal - sorry but he isn't, since in this day and age there is absolutely no need whatever for a T1 to be like that.  With older insulins and regimes, it was more likely to fall off the knife edge - but not now!  How long ago was his DAFNE course?  If he hasn't been offered one, why?


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## Mel W (May 4, 2020)

Adam please don't apologise for being blunt; it was actually a real eye opener and very much appreciated....! It's very difficult to tell what is normal or not. Similarly thank you Jenny for your kind message. I really appreciate all the support I've got as having posted I thought I would get lots of people telling me off. Jenny he did do DAFNE but must be a good eight or so years ago, and as I say has got up to date with stuff - used Libre and now uses Dexcom. But the lows and the hypos still happen regularly, so that's why I am surprised to hear from you, Mike and Adam that you don't seem to have as many (bad ones) as he does....Again let me say I am well aware of all the challenges T1s have, and everyone's experience is different, but I feel so alone!


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## rebrascora (May 4, 2020)

Hi Mel and welcome from me too. 
I would also like to thank both yourself and Cherry for telling your stories which are important for both partners and diabetics themselves to read. I appreciate why you might want a "Partners" section to provide mutual support but I believe it is really important for us diabetics to see this stuff and understand how our condition and our management of it impacts on others. 
I think, I would probably prefer to be in my shoes dealing with my diabetes than be in yours trying to deal with the aftermath of a partner's poor management, so you both really have my greatest sympathy. Your other halves have a choice about improving their management.... you have no choice in having to cope with the fall out, other than ultimately, walking out on your relationship, which is just a really unfair position to be put in. 

Thankfully I have so far managed to keep my hospital visits to outpatients only, but I am just over a year into this and I am sure as the years go by it is easy to become more weary of the constant routine and get a bit cavalier about it. I know that my attitude has already changed towards hypos in this relatively short time and compared to the early days when they were really scary and I would be worried about having more than one a week. Now I often have two a day albeit not serious ones that I can easily manage myself but I don't think twice about it other than being happy that my readings are not too high, so I am aware that it is easy to slip into a dangerous mindset of low is better than high. I am however a bit of a control freak and very independent, so I think that helps me to keep a bit of balance, because I would be mortified if I lost control and needed help. 

I really hope that being part of the forum and exchanging ideas and thoughts with other partners/carers as well as diabetics themselves is beneficial for all of us.


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## Inka (May 4, 2020)

@Mel W I too think you’re doing a great job and I understand how stressful it must be, particularly with children. I don’t think two big hypos in 6 weeks is normal - especially not as he has a pump. Has he lost hypo awareness? Has he revisited things like his pump basal profile and meal-time ratios? My pump stopped my awful hypos (which were due to my basal insulin not meeting my needs) but it only did that because I had the right settings.

Forgive me if this is a stupid question, but does your partner’s Dexcom not alert him to impending hypos or do they come on very suddenly? And do you think he’s purposely running too low due to fear of complications?


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## trophywench (May 4, 2020)

I thought pre hypo alarms was one of the reasons people opted for proper CGMS ???


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## Mel W (May 4, 2020)

Barbara and Inka thank you so much for your messages too. I've been sitting here with tears in my eyes. I came on this board feeling so down this morning and expecting to be given short shrift, which it was why it was amazing to find Cherry's original message. Your replies have been really supportive and full of understanding, thank you. Sometimes he'll judge the amount of insulin wrong and he doesn't weigh his food. Inka I think he runs low to avoid complications, although not always intentionally. Sometimes he just makes mistakes as we all do. He does get alarms but because he tends to get worst hypos in the middle of the night or first thing in the morning he often doesn't respond to the alarm before I wake up, and they tend to go very low.


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## Inka (May 4, 2020)

If he’s not counting his carbs accurately, then that could be part of the problem. I find if I miscalculate and have too much insulin then it can take a while to get my blood sugar up again properly. If that happens pretty much at every meal, then his blood sugars are going to be out of kilter. 

But from what you say, it sounds like he needs to take a look at his basal rate overnight. I find I need a fraction of my normal dose around 1/2am. I think that’s quite common - to not need much insulin then. What you describe - bad hypos in the middle of the night and in the morning - was what I was getting pre-pump. With a pump, he should be able to stop, or at least greatly reduce, these. He’s lucky enough to have the Dexcom so he can see exactly what’s happening and when to make basal adjustments.

In his defence, if he’s getting a lot of hypos - even mild ones - it does make it harder to think straight or focus. Perhaps he could ever so slightly up his target sugars to reduce the risk of hypos and to improve his hypo awareness. That can work really well. 

Sorry you’re suffering. My hypos weren’t my fault but I found them mortifying. They must be terrifying to watch. Perhaps you could choose a good time to discuss things with your partner without apportioning any blame. A kind of teamwork approach to get the best control? Empathise with him about how hard it is, but do calmly explain how you feel too.


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## Mel W (May 4, 2020)

Thanks for the good advice Inka. I'll see what he says about the basal rate etc. That all sounds really sensible. I've tried over the years to talk to him about this but he (understandably) gets defensive and either doesn't want to talk about it at all or gets emotional which means that I can't really say anything as it just upsets him. 
I just find it difficult when he has a bad low to not be able to say 'right we were both up at 4 dealing with it, but then I had to calm one of the kids who is terrified of hypos for half an hour, and then be up at 6 to deal with the other and get them fed, sorted, home schooled so that you could recover.'  Of course he has to recover, it totally takes it out of you, there is no other way for this to work...I'm just exhausted too


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## Inka (May 4, 2020)

I think the best way to approach it is not in relation to a particular hypo because he’ll understandably be defensive then and possibly still feeling rough and irritable, but to choose a time that’s not related to a recent hypo and try to phrase it more generally. It depends how defensive you predict he’s going to be really, but there should be a limit to how much you let him not talk about it. He has to face up to it and the effects on you and your children - but without being made to feel an ogre or anything (not that you would make him feel that - I mean he might not feel great about the situation himself).

Even if he appears to be fairly oblivious, he might be bottling up guilt, frustration and depression. Talking about it as a shared problem is the way to go, I think, and perhaps concentrating on the effect on the children. Bear in mind that some people with diabetes are primed to snap at people if there’s any hint of criticism. It doesn’t mean it’s your fault. I used to snap at my mum but it was from fear and stress not anything she’d done really as she was only trying to help. Perhaps letting him offload a bit first might also help. He can open up about his feelings, get sympathy and maybe then be more open to discussion.


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## rebrascora (May 4, 2020)

That sounds like you are really taking the brunt of the strain. 

I wonder if it might help for him to know that basal insulin needs change for a variety of reasons and not just throughout the day but from day to day. Many people here on the forum find that they have to adjust it a little for the different seasons, needing less in the spring and summer than in the autumn/winter. Quite a few members have found that they are more or less active as a result of lockdown and they are having to adjust their basal needs accordingly for that. It can be as simple as not getting stressed during the morning commute, because you are working from home or because you spent several hours working in the garden, or that you have taken up a daily walk or run. Learning how to recognise when your basal insulin needs adjusting and getting the confidence to adjust it is a big part of managing your diabetes effectively. If basal insulin levels are not correct then you are shooting at a moving target with your bolus insulin, which makes it much more hit and miss. 

I know your partner has Dexcom. Is that in conjunction with a pump or is he on MDI (multiple daily injections)?


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## everydayupsanddowns (May 4, 2020)

i think part of the problem is that diabetes is so fickle and annoying. Constantly changing the rules, and quite happily giving very different results from the same foods - even 2 days running.

And it can be relentless, exhausting and as I read on a blog once, all the effort and time you put in is so that ‘nothing‘ happens - nothing is a pretty lousy reward.

Out of interest I just checked my sensor readings for the last 7 days. I’m lucky to be using a pump which suspends when it predicts a low might happen, and its running pretty smoothly at the moment. I have only dipped below 4.0 twice in the last 7 days. Once for 5 minutes, and the other time for 15 minutes. I don’t say this to brag, but just to give you an example of a different T1D week.

And I still think I have slightly too many hypos to be honest - I had a long period of impaired awareness of hypoglycaemia and many severe hypos in my past, be always treated at home (by Jane) without paramedics - and I am jealously guarding my remaining and recovering awareness.

PS... Severe hypos at night was my thing too - Lantus in my case. Basal pattern needs tweaking if he drops into low BG more than once in a week with no obvious cause. For alcohol consumption or exercise during the day a Temporary Basal Rate running overnight can help dodge those 3am dips


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## everydayupsanddowns (May 4, 2020)

Oh... just remembered this too. The diabetes etiquette card, that can help avoid some familiar pitfalls in talking about someone else’s diabetes - probably stuff you are doing already, but might be a helpful refresher 



			http://behavioraldiabetes.org/xwp/wp-content/uploads/2015/12/BDIAdultEtiquetteCard.pdf


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## Mel W (May 4, 2020)

Thanks Inka for your advice, yes I'll try that.
 Barbara, thank you - yes it does often feel like a strain. He is on Dexcom with a pump. 
Mike I was openmouthed - below 4 only twice in a week???! Amazing. I do understand how relentless and lousy it is forever trying to get it right. Thanks for the etiquette card - yes can tick those off. I only ever look at his BG numbers myself if he doesn't respond to me asking him and I can hear the alarm going off....


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