Hi there

[Ellie79]

Saying 'hello' and hoping to gather more information so I can help support my husband who is a Type 1 Diabetic. He's been so great since getting diagnosed in his twenties, (about 15 years ago),but recent years have been a struggle. Lots of stress. If anyone has advice for how best to help lift spirits to generally be useful, I'll take anything onboard!

Thanks for taking the time to read this.

 

[Ljc]

Hello @Ellie79 welcome to the forum. I am sorry to hear about your husbands struggle, stress can really mess with diabetes.
Is their any particular advise we can help with.
Things get to us all l at times and I know from personal experience it can be just as hard on you.

 

[Ralph-YK]

Welcome to the foru, Ellie.
Have you had some good conversations about food? Have you come up with a good routine/arrangement over meals etc?

 

[Kaylz]

Hi and welcome to the forum 🙂

Has he spoken to his team about how he is feeling?

Just wondering if there might be any type 1 support groups in your area that he might be interested in attending? I know there isnt in my area and that makes me feel really lonely at times

If theres anything specific just let us know
Xx

 

[Ellie79]

Hi everyone, thank you SO much for getting back to me so quickly!

My husband and I have great communication mostly, but in the past few years work stress, some family issues, as well as some diabetes related issues with eyes etc have led to him burning himself out. Lots of anger & sadness - he's a broody man and we're working on him opening up on admitting when he needs help. Mostly diet-wise we count all carbs etc. He has the freestyle libre which is super for being able to check his blood sugar. There are groups in our area, however they're for teenagers and parents. He has opened up and said he'd love to talk with people going through what he experiences. Do you find this site is helpful for you, if you have type 1?

Generally I think he does an amazing job at staying on top of his levels - though as a person who doesn't have to live with this disease I can only empathise, can't really understand what he's, or you all are going through.

Again, thanks again - I'm trying to stay on top of all information that I can.

 

[Docb]

Can I pick you up on a little point Ellie? Diabetes is not a disease but a condition. It's as much part of your husband as his height or for many men, hair loss. Its just that sometimes what you call things influences how you think about them and how you think of them influences how you handle them.

 

[Kaylz]

@Ellie79 I can relate to the stress of eye issues, I wasn't even diagnosed Type 1 a month when I had my first eye related issue (diabetic macular oedema) which I have had to endure countless injections for, and then last November I had to have lasering to both eyes for proliferative retinopathy even though I've always had ok hba1c's

As a Type 1 I can say most of the people here have been a great support but once or twice some not great and one incident led to me developing an eating disorder but that is a rare occurence

@Docb Type 1 is very often referred to as an autoimmune disease by professionals rather than a condition
xx

 

[rebrascora]

Hi Ellie
Sorry to hear your husband is struggling.
I have just finished a week long course called DAFNE which stands for Dose Adjustment For Normal Eating. It is a really intensive course but one of the benefits of it is that you spend a week with other Type 1s and learning how other people approach their diabetes through that has been a real insight. There were all ages of people on my course who had only been diagnosed from a few months to 50years. We all had different problems in dealing with it but the course covered them and we learned so much from each other as well as from the educators. Some of us have exchanged details and are keeping in touch to motivate and support each other.
A break from work for a week might benefit your husband as well as gaining a new insight into how to better manage his diabetes and make contacts with people who understand the issues. There was a guy on our course who had had it for 15 years like your husband and was also having problems with his sight. Learning better control is the key to preventing more damage and the course really does give you the tools to achieve that. If he hasn't already done the DAFNE course then ask his health care professionals to refer him. The course is free and the people on my course were advised to take a week's sick leave to attend.

 

[Bruce Stephens]

The course is free and the people on my course were advised to take a week's sick leave to attend.

Such courses aren't always DAFNE, and aren't always organised in the same way. The one I went on is called IDAP (insulin dose adjustment program, I think), and ran over four Wednesday evening sessions. That arrangement has the advantage that it's likely you could do it without taking time off work (you might need to leave an hour earlier or something), and there's a week between the sessions so you get to try things and then discuss how they worked at the next session.

(However, there's also advantages in a short intensive course. I don't know whether there's evidence that one or the other is better.)

 

[Ellie79]

Can I pick you up on a little point Ellie? Diabetes is not a disease but a condition. It's as much part of your husband as his height or for many men, hair loss. Its just that sometimes what you call things influences how you think about them and how you think of them influences how you handle them.

Hi @Docb I totally take your point, of course how we call things has an impact, but I can only go on how my husband and his doctors talk - they all talk about how to handle the disease and while chronic, it's the word we've all used since I met him.
I am sorry, however, if it caused any offence!
I met my husband long after he had been diagnosed and take him for everything he is, his disease/condition included, as I would never have promised "in sickness and in health" without knowing I would absolutely stand by him through his tough times.

 

[Ellie79]

Hi @rebrascora - that's certainly something I will look up thank you! He's taken some time off work, which I hope is helping. He's very ambitious and a high achiever, which I know can lead to problems on its own so I'm hopeful that he can see that life can slow down and be "boring", and everything is still lovely despite it.

And thank you to @Bruce Stephens too, I'll make a search for both options. When he goes back to work I want to ensure a smooth transition and maintain our communication so we can either avoid another year like this one, or at least so I can be better support for future downturns. He's in a lucky position to have been able to take off from work, and has the full support from his company which is fantastic.

Also to @Kaylz his eye injections began a few months ago and I know it caused so much worry. So far we've had amazing care, but is there anything you could share that would be the biggest help? Or is it simply a matter of wanting the people around you to just try to understand? As he has stated he'd like to talk to other type 1 folk, I know that some online communities have actually made him worry about the possible future health scares, stuff he dwells on without knowing it'll even happen. I'd love to find support for him that while definitely is realistic, is also positive and pro-active. Does that make sense?

@Ljc and @Ralph-YK , thank you both too, I had answered your comments without knowing I could reply with names! It's true I'm finding it tough, but that's what I'm here for, to hold him up when he can't. He'd do it for me. The depression /generally being down is hard, but being careful with food and being otherwise healthy is key. We're both very active both in our jobs and at home, so that is helpful with regards to food, but very tiring for him when there are bad nights or stressful days. Inner batteries get drained faster, if you know what I mean.

Sorry for the long reply to everyone, I just want to say a big thank you for taking the time to try to inform me, and for helping - it's so brilliant, thank you.

Hi Ellie
Sorry to hear your husband is struggling.
I have just finished a week long course called DAFNE which stands for Dose Adjustment For Normal Eating. It is a really intensive course but one of the benefits of it is that you spend a week with other Type 1s and learning how other people approach their diabetes through that has been a real insight. There were all ages of people on my course who had only been diagnosed from a few months to 50years. We all had different problems in dealing with it but the course covered them and we learned so much from each other as well as from the educators. Some of us have exchanged details and are keeping in touch to motivate and support each other.
A break from work for a week might benefit your husband as well as gaining a new insight into how to better manage his diabetes and make contacts with people who understand the issues. There was a guy on our course who had had it for 15 years like your husband and was also having problems with his sight. Learning better control is the key to preventing more damage and the course really does give you the tools to achieve that. If he hasn't already done the DAFNE course then ask his health care professionals to refer him. The course is free and the people on my course were advised to take a week's sick leave to attend.

 

[Docb]

No offence at all Ellie I was a little worried that you might have been a bit annoyed by my suggestion. From what you have said, he's lucky to have you around!

 

[Bruce Stephens]

And thank you to @Bruce Stephens too, I'll make a search for both options.

I was perhaps unclear. These are usually things offered by hospital departments to patients, so the details (of which one they offer and how it's arranged) are presumably decided by your local CCG. It's not something I had any choice over: IDAP is what our local version is called, and they wanted to do it (at least this time) over 4 Wednesday evenings.

(There's the online https://www.bertieonline.org.uk too, but there are definitely advantages in doing this in person if you can.)

 

[Ellie79]

@Docb Not at all - I'm so grateful you all have taken the time to teach me new things that I would perhaps have not thought of. I will, thanks to you, be more aware of language in future - what I have deemed correct speech could actually be bothering my husband, or anyone I talk to within his team! Always good to see things from another perspective - I'm truly thankful.

@Bruce Stephens ah, that's my own idiocy in action here as I'm not so good at knowing all the acronyms involved! My husband doesn't use them when talking about things. I'm learning now though! We're going to talk with his diabetes clinic this week to see what support and classes are on offer, maybe something will leap out that seems good to him. Thank you again, I'm going to take a look at that link too - feeling very positive that at the very least, thanks to you all sharing, I can go in the right direction for him.

 

[Kaylz]

Also to @Kaylz his eye injections began a few months ago and I know it caused so much worry. So far we've had amazing care, but is there anything you could share that would be the biggest help? Or is it simply a matter of wanting the people around you to just try to understand? As he has stated he'd like to talk to other type 1 folk, I know that some online communities have actually made him worry about the possible future health scares, stuff he dwells on without knowing it'll even happen. I'd love to find support for him that while definitely is realistic, is also positive and pro-active. Does that make sense?

Sometimes I feel I want to be able to understand myself as well as others understanding but if I cant then I cant expect them to lol, no matter how well you take care of yourself anything can still happen and that is soo frustrating sorry I don't really have anything to help unless he has any specific questions etc, just stay positive in the meantime xx

 

[Ellie79]

Sometimes I feel I want to be able to understand myself as well as others understanding but if I cant then I cant expect them to lol, no matter how well you take care of yourself anything can still happen and that is soo frustrating sorry I don't really have anything to help unless he has any specific questions etc, just stay positive in the meantime xx

It's a constant learning curve for all of us, isn't it? I hope you're ok - I have seen my husband take such extra care with everything only to have broken sleep with hypos which leads to an all round decline in healthy behaviour. Rest and relaxation are now my number one need for him, so I hope you get to take some time out to switch off from worries or stresses. Easier said than done, I know! If you ever have a bad day here though, I can be a decent enough cheerleader, so please don't hesitate to get in touch. Thank you for offering up your advice, it's be very helpful!

 

[Kaylz]

It's a constant learning curve for all of us, isn't it? I hope you're ok - I have seen my husband take such extra care with everything only to have broken sleep with hypos which leads to an all round decline in healthy behaviour. Rest and relaxation are now my number one need for him, so I hope you get to take some time out to switch off from worries or stresses. Easier said than done, I know! If you ever have a bad day here though, I can be a decent enough cheerleader, so please don't hesitate to get in touch. Thank you for offering up your advice, it's be very helpful!

it certainly is! I have my ups and downs just like everyone else but if my mood is down it seems to take forever to lift my spirits, no real rest for the wicked, I live with my mum but we had to take my OH's cat in a few months ago when he needed extra care after an emergency tail amputation as my OH works and he's too much some days, my mum has a lot of glass ornaments etc so I'm up and down all day stopping him from breaking things 🙄

Thanks I really appreciate your offer and please know you are welcome to do the same anytime and tell your husband if he decides to take a plunge and join in here he's welcome to message anytime as well 🙂
xx