Partner with T1 diabetes

[a2412]

I've been with someone for a while who suffers from type 1 diabetes. He's well in control of his condition and his HbA1c is 7%. He eats really well, he just enjoys to drink a fair amount but its never affected him and his hypos. The last time he had a seizure was when he was a child at 11 years. He's now 27. We recently went on holiday to a hot country and we had been drinking for 2 days in a row - in the evenings not during the day time. On the third day he told me he needed a coke then suddenly started having a seizure and collapsed. It was pretty scary for me because I had never seen anything like that before, which naturally has worried me. I do see myself having a future with him but I just feel pretty traumatised over the situation, nor would I leave him over a manageable condition.

I've researched a lot into the condition, I know a fair amount about it as I'm a pharmacist - but its different when someone close is going through it? I've looked into the libre and hope to get it through the NHS, was also looking into self funding for the dexcom. But he doesn't find the self-funding necessary as he measures his glucose levels through the finger prick several times a day and its served him well until this incident which just happened out of no-where.

I just wanted to know how other people had been managing their condition, as it affected them having kids, their married life etc? Do you live a relatively normal life? I'm just scared that I'm going to be constantly worried about him especially when drinking, I dont want to leave him but I don't know what to do or how to get rid of the worry? I'm hoping for some reassurance and if some people could share their experiences please!

Sorry for the lengthly post - I just needed some advice!

 

[Jaylee]

Hi @a2412 ,

Welcome to the forum.. Hot climate= can increase insulin sensitivity. (It does for me.)
The booze= can retard liver dump of glycogen. Bringing on more rapid hypos (BS drops.) if they occur.. Hence more consistent BG testing in these circumstances. His incident sounds like "misadventure."

I came pretty close to a seizure at the age of about 9/10. but never passed out.
I'm racking up 42 years of diabetes. My life is normal for me.!

Why not get your fella to sign up?

 

[Diakat]

Well, I think I have a pretty "normal" life, but normal differs! I am t1, I work, am married, have a child, exercise, go out, go on holiday, drive, eat, deal with household chores and am generally superwoman.
Diabetes throws odd stuff at us all sometimes, but so does life...

 

[a2412]

Well, I think I have a pretty "normal" life, but normal differs! I am t1, I work, am married, have a child, exercise, go out, go on holiday, drive, eat, deal with household chores and am generally superwoman.
Diabetes throws odd stuff at us all sometimes, but so does life...

Thank you for this, That's really good to hear. Did you have any problems in having children? What do you do to measure your levels? Does stress affect you?

 

[Jenny15]

I've been with someone for a while who suffers from type 1 diabetes. He's well in control of his condition and his HbA1c is 7%. He eats really well, he just enjoys to drink a fair amount but its never affected him and his hypos...

I'm just scared that I'm going to be constantly worried about him especially when drinking, I dont want to leave him but I don't know what to do or how to get rid of the worry? !

Hi there, IMO your feelings are perfectly understandable and it is a great idea to reach out on this forum.

As a T2 I can't comment on the management of T1. However, I happen to have experience of being in a relationship with someone affected by a long term illness.

My ex did not look after himself well and it caused me constant worry. It became a deal breaker for me, as my own health was being seriously affected. I don't think you are at risk of that at all, and if I can help someone else avoid the mistakes I made, that is a good thing.

A T1 can lead a normal life and do almost everything other people can. Some T1s have reached the top of their sporting field, others have become successful business owners, and so on. There are women in this forum who have managed pregnancy and childbirth more than once while being T1.

Your partner might not understand how much his recent episode has you worried for him. You will want to strike the right balance between discussing the ins and outs enough that you are reassured and can relax as much as possible about the future, without him feeling unduly pressured. I don't think he was necessarily reckless before the seizure - it could have been something beyond his control, and we may never know.

A T1 can enjoy a few drinks but they will eventually find that they need to manage it carefully to avoid mistakes like this. A seizure is stressful for those who see it but the person having the seizure often doesn't realize that. To them, they simply woke up to worried faces and needed to get up off the floor and dust themselves down.

There are various ways to approach this difference in perception of what happened and what could happen again. You could attend a nurse or doctor visit with him, and hopefully the professional will gently explain that this conundrum is common to all couples where one person has T1 or any other illness that can cause seizures or effects like them.

Or, a friend or family member he trusts could gently suggest the issue to him when alone with him. And there are lots of other ways to tackle it.

Personally, I think a serious long term relationship warrants the kind of environment where both people would be comfortable with the other knowing anything they want to know about a major medical condition like T1. Sometimes people can be private about it but that can affect the day to day practicalities of a long term relationship.

It's very normal for the non T1 partner to worry, a lot. We can help you manage that to a great extent but the info and reassurance is best if it comes from your partner himself.

I hope all this is helpful but please let me know if I've overstepped the mark in any way. It's not my intention to do that.

Best of luck.

 

[a2412]

Hi there, IMO your feelings are perfectly understandable and it is a great idea to reach out on this forum.

As a T1 I can't comment on the management of T1. However, I happen to have experience of being in a relationship with someone affected by a long term illness.

My ex did not look after himself well and it caused me constant worry. It became a deal breaker for me, as my own health was being seriously affected. I don't think you are at risk of that at all, and if I can help someone else avoid the mistakes I made, that is a good thing.

A T1 can lead a normal life and do almost everything other people can. Some T1s have reached the top of their sporting field, others have become successful business owners, and so on. There are women in this forum who have managed pregnancy and childbirth more than once while being T1.

Your partner might not understand how much his recent episode has you worried for him. You will want to strike the right balance between discussing the ins and outs enough that you are reassured and can relax as much as possible about the future, without him feeling unduly pressured. I don't think he was necessarily reckless before the seizure - it could have been something beyond his control, and we may never know.

A T1 can enjoy a few drinks but they will eventually find that they need to manage it carefully to avoid mistakes like this. A seizure is stressful for those who see it but the person having the seizure often doesn't realize that. To them, they simply woke up to worried faces and needed to get up off the floor and dust themselves down.

There are various ways to approach this difference in perception of what happened and what could happen again. You could attend a nurse or doctor visit with him, and hopefully the professional will gently explain that this conundrum is common to all couples where one person has T1 or any other illness that can cause seizures or effects like them.

Or, a friend or family member he trusts could gently suggest the issue to him when alone with him. And there are lots of other ways to tackle it.

Personally, I think a serious long term relationship warrants the kind of environment where both people would be comfortable with the other knowing anything they want to know about a major medical condition like T1. Sometimes people can be private about it but that can affect the day to day practicalities of a long term relationship.

It's very normal for the non T1 partner to worry, a lot. We can help you manage that to a great extent but the info and reassurance is best if it comes from your partner himself.

I hope all this is helpful but please let me know if I've overstepped the mark in any way. It's not my intention to do that.

Best of luck.

Thank you so so much for this.

He really does look after himself, eats healthy, exercises, checks his levels constantly. I just feel like after seeing him go through the seizure and all the blood - thats scared me the most, plus he had a really bad knock to his head on a table when he collapsed.

I explained my concerns to him and he was completely understanding about it. Last night was the first night we went out since the seizure and I kept worrying about how much he was drinking and felt like I couldn't really enjoy my night. My sister turned around and said its a worry I'm always going to have deal with in the future. Im worried that the amount he drinks, will cause a serious drop in his levels to cause a hypo out of no-where that was just as bad as what I saw.

I couldn't agree with you more, its more stressful for the person watching rather than the person going through it.

 

[Antje77]

Sounds like you've had a very scary experience, but considering his history, it also sounds very much like a one-off thing. He seems to have things pretty much under control, it only went disturbingly wrong when almost all parameters changed all of a sudden : different food, different sleep, different exercise, different climate, possibly different time-zone, different alcohol. So many things to take into account.
I understand it scared you, but it doesn't sound like your friend hasn't got control of his diabetes. In all normal situations , even when going out drinking, he has his experience to fall back on. I would try to trust to that again. He's had almost 20 years without a very bad hypo before this episode, so it'll probably be a long time, if ever, before something like this happens again.
Good luck!

 

[Jenny15]

Thank you so so much for this.

He really does look after himself, eats healthy, exercises, checks his levels constantly. I just feel like after seeing him go through the seizure and all the blood - thats scared me the most, plus he had a really bad knock to his head on a table when he collapsed.

I explained my concerns to him and he was completely understanding about it. Last night was the first night we went out since the seizure and I kept worrying about how much he was drinking and felt like I couldn't really enjoy my night. My sister turned around and said its a worry I'm always going to have deal with in the future. Im worried that the amount he drinks, will cause a serious drop in his levels to cause a hypo out of no-where that was just as bad as what I saw.

I couldn't agree with you more, its more stressful for the person watching rather than the person going through it.

Yes, head injury or other injury is one of the risks of seizures and it's why T1s have to take extra care when drinking or doing anything else that might cause a sudden hypo.

I think he should get medical advice to check out the level of head injury and to figure out why he had the hypo. (If it was a hypo and not an unrelated seizure disorder). He might need to start testing every hour while drinking, or something like that, if only to allow you to relax and enjoy yourself.

Continuous glucose monitoring (CGM) with an alarm can literally be a lifesaver if a T1 develops Hypo Unawareness during waking and/or sleep, or some other T1 issue that puts them at risk of sudden changes in BG level.

Personally, if I was a T1 and would benefit from CGM and could access it I would jump at the chance because it seems so much more convenient than fingerprick testing and in many cases it has been shown to have a clear clinical benefit too.

I'm a 49 year old non drinker who certainly enjoyed drinking a lot in my 20s. Like I said before, having T1 doesn't need to stop a person drinking altogether but drinking a lot can increase risks, such as what happened to your partner.

At 27, it's normal for us to want to have a good time when out socializing... it was only once I reached 40 that I lost interest in it. It is a cliche but it's possible to have a great night out without drinking or just having one or two drinks. Hopefully he will decide to use CGM, at least while he is drinking, or he might cut it down. It's his decision, of course.

 

[a2412]

Hi @a2412 ,

Welcome to the forum.. Hot climate= can increase insulin sensitivity. (It does for me.)
The booze= can retard liver dump of glycogen. Bringing on more rapid hypos (BS drops.) if they occur.. Hence more consistent BG testing in these circumstances. His incident sounds like "misadventure."

I came pretty close to a seizure at the age of about 9/10. but never passed out.
I'm racking up 42 years of diabetes. My life is normal for me.!

Why not get your fella to sign up?

42 years. wow! In hot climate do you reduce how much insulin you take then?

 

[Jenny15]

I just saw this youtube playlist for young people with T1 and it has some cool short videos about having a night out. Your partner might enjoy watching them with you and having a laugh. They're quite sweet.

 

[Diakat]

Thank you for this, That's really good to hear. Did you have any problems in having children? What do you do to measure your levels? Does stress affect you?

My pregnancy was pretty rough, but then a lot are! My child is (so far) healthy. I fongerprick for levels but have self funded the Libre in the past. Yes, stress raises my levels as does illness.

 

[Robinredbreast]

I agree with the other's and you have both had a scary time. Have a look at this, as it's a useful link. Take care and I hope things will improve.

https://beyondtype1.org/how-to-support-a-spouse-with-diabetes/

 

[GS1982]

Hi @a2412

I read your post with empathy and understanding. I have similar memories of the first time my partner had a seizure in his sleep. He is Type 1 and we have been together just over 10yrs now. You have so many questions after it happens! Whilst he manages his diabetes very well, there have been a number of hypo seizures since then, but I have built up my own way of handling them and dealing with them. It is totally natural to worry, it is a lot of pressure put upon you to deal with these when they happen. I got to a point where I would literally watch his every move when we were together and if he twitched or did anything out of the norm, I would start to look around for a clear area ready for if he collapsed and went in to a seizure so he wouldn't hurt himself, a coat or a cushion to put under his head, where the nearest shop or café was to get a sugary drink from and who was nearby to call and ask for help. It would pre-occupy our time together and sometimes ruin it.

As time went by, all of this subsided for me and I learnt that planning for these eventualities was key:

1) I always have 3 or 4 of these in the bedside drawers:

We usually get them from eBay or Amazon.
They are so effective in a short space of time, we have them in the cars, in our work bags, in drawers around the house and at family/friend's houses. They are small, but VERY effective. If his blood is around 2.5-3.00 these will work in a matter of a couple of minutes to bring it up. When he has a hypo, his blood is typically between 1.0-2.0. Also, would recommend carrying these when flying/travelling too. He has a letter from his diabetic clinic to allow an extra liquids bag in hand luggage for these pouches and his insulin.

2) I made a rule, and told him too, that if he was having a seizure or rigid fitting, I would automatically call 999 as it is really hard to get someone to drink a drink when this is happening, though I would still very slowly drip-pour or OJ or coke over his mouth. I worry that I am wasting time by trying to get sugar into the system and if its unsuccessful, have wasted 10/15 mins of valuable time that could have been spent by the paramedics getting to the scene.

3) Tell your neighbours? Might sound weird, but ours have helped out when it has come to night time seizures with letting the paramedics in the house or just being an extra pair of hands which is always helpful. We're really lucky to have neighbours that we get on with and socialise with, so more friends, than neighbours.

4) When travelling abroad, in case I need it, I will translate a phrase on my iPhone to explain what's happening into the local language and screenshot it as an image on my phone. That way I can recall it quickly and show it to whoever is helping and they know what is happening, what is needed and how it can be dealt with. I've ended up learning "diabetic" in a few languages now :0)

5) Recently he started using the Freestyle Libre. For me, it was great as I could easily check his blood when he was asleep and gave me peace of mind, and it's so easy for him to use and convenient! And saves the finger tips.

6) Don't give them a hard time over it when it happens. It is totally draining to go through a hypo, so I don't give him a hard time after he has one, at the end of the day, I know he would rather not have them! It can take 2-3 days for him to feel 100% again after and sometimes longer if he has caused some damage to himself, as you have experienced.

7) If you are testing his blood when he is having a hypo (a challenge in itself) make sure you wipe fingertips first, especially if you have been trying to feed him OJ or coke as the sugar gets on the hands etc. and gives an untrue reading. I remember one of the early hypos he had and the reading was in the 20s, but he was having a seizure - I was very confused! Then I realised that was why....! :0)

The hot weather takes a toll on blood sugar levels, and his will drop faster, even when sedentary when it is hot i.e. 20c+ so taking this into account when going to sleep at night is important. In regards to drinking alcohol, we have never really found that a direct issue of low blood sugar levels., though it is certainly a contributor. However, sunshine and alcohol is a heavy mix and I would always suggest that he did a couple of units of insulin less than if he wasn't in the sunshine.

It sounds like he has a good handle on his sugar levels anyway, it just happens sometimes and I've learnt for me, it is best to be prepared for the situation if it arises and talk openly about it afterwards. For him, he never remembers anything except waking up to me and/or an ambulance crew, so I think it is good that he understands what happened, what he went through and what you go through. If you love each other, it'll work out just fine! It's what it's all about and there's definitely no need for it to become an issue or get in the way of your relationship as long as you are both open about it - in he grand scheme of life, this'll be trivial and something that you can both cope with just fine!

I hope it doesn't happen again to him, but if it does, I hope some of the information above is helpful for you :0)

 

[a2412]

Hi @a2412

I read your post with empathy and understanding. I have similar memories of the first time my partner had a seizure in his sleep. He is Type 1 and we have been together just over 10yrs now. You have so many questions after it happens! Whilst he manages his diabetes very well, there have been a number of hypo seizures since then, but I have built up my own way of handling them and dealing with them. It is totally natural to worry, it is a lot of pressure put upon you to deal with these when they happen. I got to a point where I would literally watch his every move when we were together and if he twitched or did anything out of the norm, I would start to look around for a clear area ready for if he collapsed and went in to a seizure so he wouldn't hurt himself, a coat or a cushion to put under his head, where the nearest shop or café was to get a sugary drink from and who was nearby to call and ask for help. It would pre-occupy our time together and sometimes ruin it.

As time went by, all of this subsided for me and I learnt that planning for these eventualities was key:

1) I always have 3 or 4 of these in the bedside drawers:

We usually get them from eBay or Amazon.
They are so effective in a short space of time, we have them in the cars, in our work bags, in drawers around the house and at family/friend's houses. They are small, but VERY effective. If his blood is around 2.5-3.00 these will work in a matter of a couple of minutes to bring it up. When he has a hypo, his blood is typically between 1.0-2.0. Also, would recommend carrying these when flying/travelling too. He has a letter from his diabetic clinic to allow an extra liquids bag in hand luggage for these pouches and his insulin.

2) I made a rule, and told him too, that if he was having a seizure or rigid fitting, I would automatically call 999 as it is really hard to get someone to drink a drink when this is happening, though I would still very slowly drip-pour or OJ or coke over his mouth. I worry that I am wasting time by trying to get sugar into the system and if its unsuccessful, have wasted 10/15 mins of valuable time that could have been spent by the paramedics getting to the scene.

3) Tell your neighbours? Might sound weird, but ours have helped out when it has come to night time seizures with letting the paramedics in the house or just being an extra pair of hands which is always helpful. We're really lucky to have neighbours that we get on with and socialise with, so more friends, than neighbours.

4) When travelling abroad, in case I need it, I will translate a phrase on my iPhone to explain what's happening into the local language and screenshot it as an image on my phone. That way I can recall it quickly and show it to whoever is helping and they know what is happening, what is needed and how it can be dealt with. I've ended up learning "diabetic" in a few languages now :0)

5) Recently he started using the Freestyle Libre. For me, it was great as I could easily check his blood when he was asleep and gave me peace of mind, and it's so easy for him to use and convenient! And saves the finger tips.

6) Don't give them a hard time over it when it happens. It is totally draining to go through a hypo, so I don't give him a hard time after he has one, at the end of the day, I know he would rather not have them! It can take 2-3 days for him to feel 100% again after and sometimes longer if he has caused some damage to himself, as you have experienced.

7) If you are testing his blood when he is having a hypo (a challenge in itself) make sure you wipe fingertips first, especially if you have been trying to feed him OJ or coke as the sugar gets on the hands etc. and gives an untrue reading. I remember one of the early hypos he had and the reading was in the 20s, but he was having a seizure - I was very confused! Then I realised that was why....! :0)

The hot weather takes a toll on blood sugar levels, and his will drop faster, even when sedentary when it is hot i.e. 20c+ so taking this into account when going to sleep at night is important. In regards to drinking alcohol, we have never really found that a direct issue of low blood sugar levels., though it is certainly a contributor. However, sunshine and alcohol is a heavy mix and I would always suggest that he did a couple of units of insulin less than if he wasn't in the sunshine.

It sounds like he has a good handle on his sugar levels anyway, it just happens sometimes and I've learnt for me, it is best to be prepared for the situation if it arises and talk openly about it afterwards. For him, he never remembers anything except waking up to me and/or an ambulance crew, so I think it is good that he understands what happened, what he went through and what you go through. If you love each other, it'll work out just fine! It's what it's all about and there's definitely no need for it to become an issue or get in the way of your relationship as long as you are both open about it - in he grand scheme of life, this'll be trivial and something that you can both cope with just fine!

I hope it doesn't happen again to him, but if it does, I hope some of the information above is helpful for you :0)

Honestly, I couldn't explain it better. This is exactly how I feel! Thank you so much for your reply. I really appreciate it.

I feel like I can't really relax when we're out and drinking and I'm literally watching his every move! The smallest twitch, odd facial expression anything and I start getting worried. I really hope it does subside because it doesn't seem to be getting any better right now. Sometimes, when I close my eyes to sleep, I replay what happened whilst we were away and it just keeps scaring me more than anything!

Its great to hear that you guys doing well. I'm waiting for my partners local NHS team to be prepared to prescribe the freestyle libre on the NHS and then hopefully that will help too.

Does your partner suffer from a lot of seizures? I keep the glucose tablets on me all the time. My sisters concern is that I'll never be able to relax and be somewhat carefree. I agree with her to a certain extent but I also really love my partner and i don't want to leave him either. Just feel like it always puts me in a difficult position with my family.

The dextrose liquid gel looks great, I'll definitely look into it. I agree with the insulin sensitivity and the sun, I'll have a word with him about it. He's been away in a hot country and drinking before, Its just strange it just happened to be when we were away together.

I've been really open and honest with him about how i feel, but theres only so much he can say or do to make me feel better. I feel like its my own anxiety getting a better of me and I wish it wouldn't!