Partners/ Family Members Of A Type 1 Diabetic?

[Girlfriend01]

Hi everyone, I'm not actually diabetic myself so I hope you don't mind me posting. My boyfriend was diagnosed a few months ago and it was a massive shock. He's understandably up and down but generally he's coping really well. My job actually involves working with pre-diabetic people, and I know all too well the complications that my boyfriend is at risk of. I have been having panic attacks about what the
Future may hold for his health. I know that it's about him and I stay strong in front of him, but when I'm alone I panic and get upset about things. Does anyone have any positive stories or reassurance, or advice on how to manage my worries?

Partners/family members/ loved ones- how does it impact on you, and how do you manage?

Thank you

 

[urbanracer]

Hi everyone, I'm not actually diabetic myself so I hope you don't mind me posting. My boyfriend was diagnosed a few months ago and it was a massive shock. He's understandably up and down but generally he's coping really well. My job actually involves working with pre-diabetic people, and I know all too well the complications that my boyfriend is at risk of. I have been having panic attacks about what the
Future may hold for his health. I know that it's about him and I stay strong in front of him, but when I'm alone I panic and get upset about things. Does anyone have any positive stories or reassurance, or advice on how to manage my worries?

Partners/family members/ loved ones- how does it impact on you, and how do you manage?

Thank you

In some ways our partners get a raw deal. I am too busy managing the disease to worry about it but my partner sees me injecting and worries about what I'm experiencing, what's going to happen in the future and is continually asking me what my glucose level is. I think the emotions you are experiencing are normal - especially in the early stages - and it's only to be expected when you're kinda watching from the sidelines.

As we go through life, things change, sometimes for the better, sometimes for the worse. As the routine of testing and injecting becomes the new normal you will soon come to accept it and your fears will lessen. There are no guarantees but keeping his glucose level under control dramatically reduces the probability of diabetes complications.

So I'd say take an interest in his disease, support him when he needs a glucose drink in the middle of the night, but don't get wrapped up in it because it will not do either of you any good, - (easier said than done I'm sure).

Good luck.

 

[Scott-C]

Hi, @Girlfriend01 , it's an understandable thing to worry about but it needs to be kept in perspective. I was dx'd at 21 and had all those worries too. But 30 yrs later, it's worked out ok - no complications.

It's not a walk in the park but it is manageable.

What he needs to be careful about is "burn out". Many younger newly dx'd get themselves into a state where they just don't bother any more - miss injections, run around with levels in the twenties for days on end. That can and does lead to serious complications.

But avoiding that doesn't mean he needs to live like a monk - I go out for a few beers at the weekend, have a kebab on the way home. I go to Krakow on holiday once in a while and have found myself doing vodka shooters in a 24 hr bar called Pijalnia at 4am and then stayed there for breakfast at 6am.

I've done that but I still always keep in the back of my mind that I am T1 so I will keep an eye on my cgm, and quietly check my bg from time to time to make sure the cgm is telling me the truth, nudge my levels with a few dextro tabs or insulin now and then so that I know I'm broadly in range and not hitting 15.

It can work out well if we just pay a bit of attention to it.

Here in Scotland, an annual survey is done. Here's a link to them:

http://www.diabetesinscotland.org.uk/Publications.aspx?catId=3

The number of people suffering serious complications is reassuringly small. For example, out of 30,000 T1s in Scotland, the number registered blind because of T1 is......17. That's a tiny amount out of 30,000. I'd guess that those 17 are probably the older generation who haven't had the benefit of modern screening methods and technology, and/or the people who just don't give a **** and think it's ok to run around in the 20s.

My initial worries faded as time went by. Sure, it's taken a bit of care and attention, but it's totally possible to come out at the far end with nothing much to worry about.

 

[kitedoc]

Hi @Girlfriend01, One family member said that when I was first diagnosed at 13 it was like watching me riding on a roller coaster, would I stay on or fall off?
Now 51 years later, with just cataracts replaced, some minor hand and fingers things done, diabetes has been a challenge but I have survived. And my endocrinologist tells all his new Type 1 diabetes (TID) patients to ensure that they obtain a good normal age retirement plan once they enter employment. The outcomes are that good.
He also says that good TID diabetes control for the first 10 years seems to help make complications less likely later on.
Working with pre-diabetics and having your training and knowledge is going to provide you with an overload of knowledge and I am sure it is difficult to apply it objectively to your boyfriend.
Preventing and treating hypos are certainly my wife's main focus and concern for me. Fortunately I am on an insulin pump which seems to minimise these occurrences.
Mood changes with high or low BSLs are the other challenge.
Perhaps there may be local groups of diabetics and spouses etc and of course forums like this.

 

[Deleted Account]

There is a lovely uplifting thread about people on this forum who have had type 1 diabetes for a long time with no or few complications. Take a look at https://www.diabetes.co.uk/forum/threads/anyone-with-type-1-and-no-complications.154315/unread.
It is also worth considering the great advancements since many of these people were diagnosed.
Fifty years ago, there were no finger prick test strips or fast acting insulin and insulin was administered with sterilised syringes.

 

[Lynne C J]

In some ways our partners get a raw deal. I am too busy managing the disease to worry about it but my partner sees me injecting and worries about what I'm experiencing, what's going to happen in the future and is continually asking me what my glucose level is. I think the emotions you are experiencing are normal - especially in the early stages - and it's only to be expected when you're kinda watching from the sidelines.

As we go through life, things change, sometimes for the better, sometimes for the worse. As the routine of testing and injecting becomes the new normal you will soon come to accept it and your fears will lessen. There are no guarantees but keeping his glucose level under control dramatically reduces the probability of diabetes complications.

So I'd say take an interest in his disease, support him when he needs a glucose drink in the middle of the night, but don't get wrapped up in it because it will not do either of you any good, - (easier said than done I'm sure).

Good luck.

It's really tough for T1 partners, I've been T1 for 38 years and my husband had the patience of a saint on odd times when I get low bgs. It's not easy and I'm pretty well controlled but ultimate your partner has to deal with it, it's his life. Don't let it become a bone of contention, be supportive and you'll get to know the signs of impending hypos. Good luck!

 

[EllieM]

You say that you work with prediabetics, who are presumably heading towards T2 if they don't watch their diets? It's worth remembering that though T1 and T2 have the same symptoms, in terms of high blood sugars, they are very different illnesses. I get the impression that many T2s (maybe not the ones of these forums ) treat their condition by medication rather than exercise/diet and so go into a cycle of increasing medication to cope with increasing insulin resistance and blood sugars and eventual complications.
Since T1 is a lack of insulin, it's possible to restore the system to normal by injecting the missing insulin, and although high blood sugars (and complications) can arise if the balance between insulin and diet is messed up, there are plenty of T1s like me who manage decades without complications because their balance is "good enough". And, as a T1, I can say that the treatment for T1 is dramatically better than it was when I was first diagnosed (48 years ago), and therefore the outlook for "young" T1s is even better.
Good luck.

 

[Paul520785]

Do not worry - I have been T1 for over 60 Years - and no complications.
Just find what works for BG control and do not worry if it goes wrong sometimes - just deal with it.

My motto is - I can do anything anyone else can BUT I always take my sandwiches with me.

I quickly learnt that cheese and tomato sandwiched on a jet ski is perhaps not the best choice!

 

[Glucobabu]

Hi, @Girlfriend01 , it's an understandable thing to worry about but it needs to be kept in perspective. I was dx'd at 21 and had all those worries too. But 30 yrs later, it's worked out ok - no complications.

It's not a walk in the park but it is manageable.

What he needs to be careful about is "burn out". Many younger newly dx'd get themselves into a state where they just don't bother any more - miss injections, run around with levels in the twenties for days on end. That can and does lead to serious complications.

But avoiding that doesn't mean he needs to live like a monk - I go out for a few beers at the weekend, have a kebab on the way home. I go to Krakow on holiday once in a while and have found myself doing vodka shooters in a 24 hr bar called Pijalnia at 4am and then stayed there for breakfast at 6am.

I've done that but I still always keep in the back of my mind that I am T1 so I will keep an eye on my cgm, and quietly check my bg from time to time to make sure the cgm is telling me the truth, nudge my levels with a few dextro tabs or insulin now and then so that I know I'm broadly in range and not hitting 15.

It can work out well if we just pay a bit of attention to it.

Here in Scotland, an annual survey is done. Here's a link to them:

http://www.diabetesinscotland.org.uk/Publications.aspx?catId=3

The number of people suffering serious complications is reassuringly small. For example, out of 30,000 T1s in Scotland, the number registered blind because of T1 is......17. That's a tiny amount out of 30,000. I'd guess that those 17 are probably the older generation who haven't had the benefit of modern screening methods and technology, and/or the people who just don't give a **** and think it's ok to run around in the 20s.

My initial worries faded as time went by. Sure, it's taken a bit of care and attention, but it's totally possible to come out at the far end with nothing much to worry about.

A few beers and doing vodka shooters in an all night bar! My, you are a brave soul!

 

[Glucobabu]

Hi, I am not diabetic but I’ve joined this forum to share my thoughts and experiences on this topic. I think it is a really important point that diabetes can have a big impact on the partner of the person with diabetes, and help and support should be given to the partner as well as the diabetic. Witnessing someone you love having a hypo can be scary, and being the person who has to deal with it feels like a big responsibility. It can also feel sad and frustrating to see your partner struggling to get their blood sugar down when it is too high.

My other half (Knikki, who is already on this forum) had already had Type 1 for many years when I first met him, so I haven’t had to go through the stress of an initial diagnosis with him. I understand that this must be a very difficult period, as both partners adjust to the new situation. However I think that once you both get into the routine of managing blood sugar levels, I think you will find your level of anxiety will become much lower. Knikki has never let the condition rule his life, or stop him doing the things that he wants to do, and his positive attitude has helped me to cope with it too (though obviously he still gets frustrated occasionally). It’s very important that both partners take a strong “we won’t let this beat us!” attitude. After over 50 years of type 1, Knikki has no complications other than some mild retinopathy (that doesn’t affect his vision), so it just shows that with good sugar control and regular check-ups, it is possible to remain in good shape.

In my experience, the main challenge I face as the partner of a diabetic are the hypos. There are some routine precautions that I take, that help me cope with life as the partner of a diabetic, and give me some peace of mind:

1. I always keep a tube of glucose tablets in my handbag, and if we are going for a long walk I also take some jelly babies or biscuits, in case his blood sugar drops. Ideally, the diabetic person should always carry something with them in case they have a hypo, but we are all human, and the reality is that sometimes this can be forgotten, so it helps if the partner is prepared.
2. I have made sure that Knikki understands that sometimes I will want him to test his blood sugar at times when he doesn’t feel the need to, if doing this will help to reassure me that he is not going low. Over the years I have become so in tune with what he looks like and how he behaves when his blood sugar is dropping, that I can sometimes identify that he is going hypo before he realises it himself, (though I am not always correct!). Knikki is always very understanding of my concerns and will test if I want him to, and this has helped me a lot. The key times when I want to know what his blood sugar is are before bed, before he goes out without me, before he drives, before he starts to exercise.
3. When Knikki goes hypo he sometimes refuses to believe he is low, and it can be a struggle to get him to eat anything. There have been times when I have shed tears of frustration when trying to persuade him to open his mouth! We always have stock of the one food that will tempt him the most – and for Knikki this is Jaffa Cakes. Failing that, a sugary drink, or jam on bread has worked.
4. We make use of the available technology (where possible/affordable). Knikki has recently got a Freestyle Libre on a 6 month trial, which means that it is easy for him to test more frequently (as he doesn’t have to do a finger prick), and he can get a “trend” of whether his blood sugar is on the way up or down. This has been very helpful. It also gives me the reassurance that if I wake in the night and suspect that he is hypo, I can just scan him while he is asleep, and be reassured (if he is OK) or do something about it (if he is low). This is an awful lot easier than trying to do finger pricks on him in the night. The only thing that the Freestyle Libre is missing is the one thing that I think would help both of us the most – an alarm system that will give a warning if he drops too low or goes to high. This would be a real game-changer for us! I understand that such a system is available, but both it, and the Freestyle Libre system, are expensive and not necessarily available on the NHS, so are not an option for everyone.

I hope that some of this helps in some way. Wishing you and your partner all the best of luck with managing the condition.

Reading your post felt like my wife writing about us. I have been Type 1 for 43 years, that’s our entire married life. I am her Knikki. It all sounds so familiar except that I have not been lucky enough to have Freestyle Libre. Thank you for sharing your experiences.

 

[Jenny's]

In some ways our partners get a raw deal. I am too busy managing the disease to worry about it but my partner sees me injecting and worries about what I'm experiencing, what's going to happen in the future and is continually asking me what my glucose level is. I think the emotions you are experiencing are normal - especially in the early stages - and it's only to be expected when you're kinda watching from the sidelines.

As we go through life, things change, sometimes for the better, sometimes for the worse. As the routine of testing and injecting becomes the new normal you will soon come to accept it and your fears will lessen. There are no guarantees but keeping his glucose level under control dramatically reduces the probability of diabetes complications.

So I'd say take an interest in his disease, support him when he needs a glucose drink in the middle of the night, but don't get wrapped up in it because it will not do either of you any good, - (easier said than done I'm sure).

Good luck.

I was diagnosed at almost 24 and that was 44 years ago. Had to boil syringes at first with big metal needles and only one injection a day on 24 hour insulin. How things have changed for the better with easy blood glucose testing such as Freestyle Libre. All I can say is do your best and just get on with life. You have to live and there will be good days and bad days but that’s not only your diabetes but daily life in general. I told people, especially work colleagues as I sometimes needed their assistance when dealing with low blood sugar but people like to be helpful so teach as many family and friends as you can about it and maybe they will be helpful to someone else. It’s there, live your life fully while dealing with it and never let it stop you doing anything. All the very best for the future. Did I say I’m female and had 2 children by c section both of whom are adults and neither have diabetes.