Hi I'm Mandx my partner is a type 1diabetic has been for 45 years

[mandx]

Can someone please explain to me why my partner has hypos almost every day why doesn't he just have something to eat or drink before his sugar levels drop so low and he has no idea what's going on .I'm so fed up it's wearing me down

 

[AceFace]

Can someone please explain to me why my partner has hypos almost every day why doesn't he just have something to eat or drink before his sugar levels drop so low and he has no idea what's going on .I'm so fed up it's wearing me down

Welcome Mandy, I would look at seeking medical advice, in the view to adjusting his insulin levels, and get some counselling for him not eating or drinking there is obviously a psychological issue, I was the same except the other way, keeping myself high, I was helped by the freestyle libre and counselling.

 

[Inka]

I replied on your other thread @mandx but it could well be he has hypo unawareness. Hypos cause the brain to misfunction. This can cause aggression, confusion and what looks like a wilful refusal to treat the hypo. It’s not - that refusal to act is actually a hypo symptom.

If you’re suggesting he has an eating disorder that’s affecting his eating and thus causing hypos, that would need specialist input, but it could just be his insulin regime needs changing. Repeated hypos can cause lasting effects on the brain so this needs sorting - for both your sakes.

If you don’t feel able to talk to him, write it down. Try to stay factual and give examples of situations else he might just become defensive. If you know or can get the number of his DSN, you could also phone them and alert them. They could then make a ‘random’ call to him and not mention your contact.

 

[everydayupsanddowns]

So sorry to hear what you are going through @mandx

He isn’t helping himself, and that’s not helping you. It’s not kind, and being perfectly honest, I’ve been somewhere near where he is (although without the frequency), and I am ashamed that I let it carry on for so long, and have such a negative effect on my family. But at the time I simply couldn’t see it.

I had always preferred to run ‘on the low side’ preferring 5s to 10s, because of my fear of long-term complications, and because low level dips below 4.0 were easy enough and quick enough to fix, whereas highs were annoying and took longer to come down.

Over the years I got less good at spotting when my levels were going low, and my lovely wife would ask me (based on my behaviour, or pale waxy expression) are you low?

Generally I’d check, and sort it out, but once in a while (especially first thing in the morning) I’d be “too far gone”. I never needed an ambulance call-out, but sometimes I’d get stubborn. One time I think I really scared her, and was behaving angrily. Our kids were quite small at the time.

The thing was I ‘normalised’ my behaviour and situation. My clinic had always told me I was doing well. I convinced myself that as many lows as I was having was normal. That they couldn’t be avoided.

It was only later after another nasty overnight low (and a trip to A&E in that instance) that the light dawned. I began - painfully and gradually, to understand quite how often these nastier lows had become. I’d have thought 6-monthly, but at times I was told it was fortnightly.

I joined the diabetes online community. We began writing a blog as a family. And over the years I cut out probably 90% or more of the lows I was having. I haven’t had Severe Hypoglycaemia (where you need help from another person to recover) for decades now.

But (and this is important) My HbA1c is now lower than it was. I just don’t have the same number of hypos. Nothing like.

Plus by working at reducing my time spent below 4.0, my hypo awareness has significantly improved. I never completely lost it, but it was pretty battered for a few years.

These days, with CGM and alarms there is no need for him to be having as many lows as he is, and he should not be making you feel the way you are. He can fix this. And if he chooses not to, then I think you should put your health and well-being as a priority, and ask yourself if the relationship has run its course.

 

[Sally71]

Put very very simply - he’s taking too much insulin. Diabetes unfortunately is a complicated beastie, you can’t just go to the doctor, get some pills and then take the same dose for the rest of your life. There are so many things which can affect blood sugar levels - food and exercise obviously, but then temperature, hormones, illness, stress, anxiety and all sorts of other things can all have an effect. Which means that keeping blood sugars under control takes effort and regular adjustments to insulin doses as well as food intake. It’s absolutely relentless - I only had to take charge of it for a few years while my daughter was small, she gets on with it on her own now, I found it really hard sometimes though and it’s likely that she’ll have to deal with it for the rest of her life. And saying “I can’t be bothered with all that today, I want a day off” isn’t an option, but getting fed up with it all is a very real possibility. For a while l felt quite jealous of my daughter’s friends just eating whatever they liked whenever they felt like it, but we had to sit down and do calculations, finger pricks and insulin doses before she could even have a small snack.
If your partner has a lot of hypos then it’s also probable that he can’t feel them any more and thinks everything is normal. This could be corrected by running his blood sugars a bit higher for a while (which would not hurt him in the long run).
Why he can’t/won’t do anything about it is obviously more complicated, and I’m sorry I don’t have any brilliant advice on that score. But he could get his diabetes under control if he wanted to; speak to his doctor/DSN and start tweaking insulin doses for a start. He has to know that he’s got a problem and want to do something about it himself though. I really feel for you - you obviously care for him a lot and want to get it sorted, good for you, please take care of yourself though as well x

 

[Proud to be erratic]

The frank and honest response at post #4 above by @everydayupsanddowns is, I think, far from rare in reflecting how some people can behave. After my pancreas removal surgery and consequent diagnosis as insulin dependent thereafter, a cousin in my age bracket and long term T1 for some 40 yrs then made a point of telling me that in his past he would frequently get lows and become aggressive. He wanted to most gently caution me and make sure my wife was aware this could happen. His marriage had collapsed, his wife left him and his behaviour would certainly have worsened matters.

I have a nephew (from marriage not a blood relative) T1 since age 16, who is now in his late 40s and his behaviour can be unpredictable. Much of the time he manages his BG well enough, doing all the right things; but he also feels that his D is relentless. Not so long ago he went walking in the Grampians, on his own, leaving his wife and young children on their own for a few days in the South of England. He did not take any insulin (he saw this as his diabetes holiday) expecting as had happened on previous trips that the extra exercise would give him some respite from taking insulin. It didn't, he went hyperglycaemic and was discovered the following morning in a semi-concious state by a passing pair of walkers; they got him off the mountain and to a Hospital a very long way from where the family car was parked. A week later he was discharged and returned home. Even after that incident he was in semi-denial about it all and still refusing to start using CGM, despite it being offered by his own Hospital. His wife had to be very robust in making him accept things had to change. His behaviour was unreasonable, ingrained from growing up in an era when very little tech existed to help and with a strong feeling that no-one could help him manage his burden; along with feeling totally confident that he knew what he could do to get by.

There is no doubt that being insulin dependent can feel relentless and, I guess, the more one feels that way the more it becomes relentless. Gary Scheiner in his book "Think Like a Pancreas" early on tells his readers that 'Diabetes is Complicated, Confusing and Contradictory'. That is so true. So many small things to constantly monitor, juggle with and always somewhere close by. My Consultant told my wife that I routinely, every day of my life, make over 300 diabetes related decisions; many are almost subconscious but are nevertheless going on. 300 decisions in a long 18 hr day is still some 17 times an hour or once every 3 or 4 minutes.

I know that none of this helps you find a way of getting your partner to change. It might just help you to understand, @mandx, that you are not alone in being in this position and provide a tiny comfort blanket with that knowledge. I certainly don't know where there might be a magic wand. Your partner has to want to help himself to get into a better medical/mental state. Do look after yourself, as well as caring about your Partner.

 

[trophywench]

The so called diabetes distress only hit hard with me from a couple of years ago, when my HbA1c suddenly shot up from the low 50s to the middle 60s. Whaaat? Why? How? Turns out I have something called CLL meaning I have a lot more white blood cells then I should have, which is a form of Leukaemia but of the type that if they hadn't identified the type until very recently. would not these days even be classed as cancer. They tell you this then hand you a publication explaining it all properly. The publication is from Blood Cancer UK. (Hang on - you've just explained to me in very careful detail that it isn't cancer - then hand me, not a leaflet, more a slim paperback book - published by Blood Cancer UK! Sorry, so ironic it just made me giggle, think the Haematology Consultant must have thought I was an air head) So went some way to account for the increased HBA1c results.

But it didn't and couldn't cure the fact that I was thoroughly and simply sick & tired of having to constantly THINK about my diabetes every single hour of every single day of my life - if I chose deliberately not to engage myself with it - it would inexorably remind me next time I eg went to the loo and saw my pump cannula when I was in the middle of watching a TV prog or was lost in a good book etc etc etc ad infinitum because there just is no escape - I'm stuck with it.

If diabetes was an employer one would sue it for no time off ! Hence I told my consultant that I was at least 200% sick of being at its beck and call constantly and if a closed loop pump could relieve that even just a teeny bit - then PLEASE PLEASE, could I have one!

Thought at the time that the chances of that were slim, but have been proved wrong.

Insulin pumps are by no means simple or 'work free' and take some getting used to until one learns how the other operates - but unless the patient is prepared to engage with that learning and the technology used, then they don't solve anything, most especially they don't do it mega quickly.

 

[mandx]

So sorry to hear what you are going through @mandx

He isn’t helping himself, and that’s not helping you. It’s not kind, and being perfectly honest, I’ve been somewhere near where he is (although without the frequency), and I am ashamed that I let it carry on for so long, and have such a negative effect on my family. But at the time I simply couldn’t see it.

I had always preferred to run ‘on the low side’ preferring 5s to 10s, because of my fear of long-term complications, and because low level dips below 4.0 were easy enough and quick enough to fix, whereas highs were annoying and took longer to come down.

Over the years I got less good at spotting when my levels were going low, and my lovely wife would ask me (based on my behaviour, or pale waxy expression) are you low?

Generally I’d check, and sort it out, but once in a while (especially first thing in the morning) I’d be “too far gone”. I never needed an ambulance call-out, but sometimes I’d get stubborn. One time I think I really scared her, and was behaving angrily. Our kids were quite small at the time.

The thing was I ‘normalised’ my behaviour and situation. My clinic had always told me I was doing well. I convinced myself that as many lows as I was having was normal. That they couldn’t be avoided.

It was only later after another nasty overnight low (and a trip to A&E in that instance) that the light dawned. I began - painfully and gradually, to understand quite how often these nastier lows had become. I’d have thought 6-monthly, but at times I was told it was fortnightly.

I joined the diabetes online community. We began writing a blog as a family. And over the years I cut out probably 90% or more of the lows I was having. I haven’t had Severe Hypoglycaemia (where you need help from another person to recover) for decades now.

But (and this is important) My HbA1c is now lower than it was. I just don’t have the same number of hypos. Nothing like.

Plus by working at reducing my time spent below 4.0, my hypo awareness has significantly improved. I never completely lost it, but it was pretty battered for a few years.

These days, with CGM and alarms there is no need for him to be having as many lows as he is, and he should not be making you feel the way you are. He can fix this. And if he chooses not to, then I think you should put your health and well-being as a priority, and ask yourself if the relationship has run its course.

Thankyou so much for your text reply it makes me hopeful that something can be done I wld love to show my partner what you have written and wld hope he wld read it I just have to try and find the right time if he's ok and in a good mood I'm worried it will annoy him but if I show him when he's not in a good mood he won't read it it all boils down to him thinking he knows best and knows it all X o am going to try though x

 

[mandx]

The frank and honest response at post #4 above by @everydayupsanddowns is, I think, far from rare in reflecting how some people can behave. After my pancreas removal surgery and consequent diagnosis as insulin dependent thereafter, a cousin in my age bracket and long term T1 for some 40 yrs then made a point of telling me that in his past he would frequently get lows and become aggressive. He wanted to most gently caution me and make sure my wife was aware this could happen. His marriage had collapsed, his wife left him and his behaviour would certainly have worsened matters.

I have a nephew (from marriage not a blood relative) T1 since age 16, who is now in his late 40s and his behaviour can be unpredictable. Much of the time he manages his BG well enough, doing all the right things; but he also feels that his D is relentless. Not so long ago he went walking in the Grampians, on his own, leaving his wife and young children on their own for a few days in the South of England. He did not take any insulin (he saw this as his diabetes holiday) expecting as had happened on previous trips that the extra exercise would give him some respite from taking insulin. It didn't, he went hyperglycaemic and was discovered the following morning in a semi-concious state by a passing pair of walkers; they got him off the mountain and to a Hospital a very long way from where the family car was parked. A week later he was discharged and returned home. Even after that incident he was in semi-denial about it all and still refusing to start using CGM, despite it being offered by his own Hospital. His wife had to be very robust in making him accept things had to change. His behaviour was unreasonable, ingrained from growing up in an era when very little tech existed to help and with a strong feeling that no-one could help him manage his burden; along with feeling totally confident that he knew what he could do to get by.

There is no doubt that being insulin dependent can feel relentless and, I guess, the more one feels that way the more it becomes relentless. Gary Scheiner in his book "Think Like a Pancreas" early on tells his readers that 'Diabetes is Complicated, Confusing and Contradictory'. That is so true. So many small things to constantly monitor, juggle with and always somewhere close by. My Consultant told my wife that I routinely, every day of my life, make over 300 diabetes related decisions; many are almost subconscious but are nevertheless going on. 300 decisions in a long 18 hr day is still some 17 times an hour or once every 3 or 4 minutes.

I know that none of this helps you find a way of getting your partner to change. It might just help you to x understand, @mandx, that you are not alone in being in this position and provide a tiny comfort blanket with that knowledge. I certainly don't know where there might be a magic wand. Your partner has to want to help himself to get into a better medical/mental state. Do look after yourself, as well as caring about your Partner.

Thankyou so much it does help to know I'm not alone x

 

[everydayupsanddowns]

Thankyou so much it does help to know I'm not alone x

Hope you are (both!) able to find a way through this @mandx

Severe hypoglycaemia is not worth messing with - it can be fatal, or at least can have life-changing consequences.

 

[HayleyR]

Hi @mandx I'm guessing that as your husband has had the condition for such a long time he's fed up with trying to manage it. Has he always been like this or was there a time when things were better? Technology has come such a long way since I was diagnosed 30 years ago and there are so many options nowadays to make it easier to manage. It's not going away as Type 1 and personally I manage my condition the best I can but equally don't let it take over my life. I really wish your husband could understand that life could be so much better for you both if he was prepared to accept help and advice from a professional. I do hope the situation improves for you both

 

[mandx]

Hi @mandx I'm guessing that as your husband has had the condition for such a long time he's fed up with trying to manage it. Has he always been like this or was there a time when things were better? Technology has come such a long way since I was diagnosed 30 years ago and there are so many options nowadays to make it easier to manage. It's not going away as Type 1 and personally I manage my condition the best I can but equally don't let it take over my life. I really wish your husband could understand that life could be so much better for you both if he was prepared to accept help and advice from a professional. I do hope the situation improves for you both

Thankyou Hayley for your reply he has a CGM and has since they first came out but I think he's even worse now than before he just doesn't want to take any notice of readings and watches his levels getting lower and lower xx

 

[HayleyR]

Thankyou Hayley for your reply he has a CGM and has since they first came out but I think he's even worse now than before he just doesn't want to take any notice of readings and watches his levels getting lower and lower xx

Oh dear, I'm sorry to hear that . I should imagine he feels very unwell with low levels all of the time so I don't understand why he doesn't want to change. Does he eat properly but takes too much insulin?

 

[mandx]

Oh dear, I'm sorry to hear that . I should imagine he feels very unwell with low levels all of the time so I don't understand why he doesn't want to change. Does he eat properly but takes too much insulin?

Hiya Hayley yes think that's exactly what he does sadly x

 

[HayleyR]

Hiya Hayley yes think that's exactly what he does sadly x

I really wish there was a simple solution but alas it's your partner who needs accept that it's vital for him to change his ways for both of your sakes