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Partner of T1 - Help!?

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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 www.everydayupsanddowns.co.uk

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

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
 
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....
 
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.
Click to expand...
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.
 
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.
 
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.
 
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?
 
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!
 
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.
 
@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?
 
I thought pre hypo alarms was one of the reasons people opted for proper CGMS ???
 
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.
 
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.
 
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 :(
 
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.
 
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)?
 
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
 
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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