Type 1 Support from family/friends

[Manfer87]

Hi,

I was interested to know what kind of support everyone gets at home, from friends, family Husband/Wife etc?

Since I was approximately 13/14 years old I have felt really alone with my Diabetes.
I struggled as a teen & had very bad control. That lead to me distancing myself from my Diabetes nurses/Dr's & eventually even trying to distance myself from my actual Diabetes.

By the time I met my now Husband (at the age of 20) I had a really unhealthy relationship with my Diabetes & just pretty much tried to fit it in where I could, rather than allowing it to be a part of my life/me.

So now nearly 12 years after meeting my Husband, we have lived together for over 10 years & I have much more control over my diabetes & I have made so many changes in my life to allow myself to care for it. But I can't help but feel like I am really alone in making these changes & allowing the proper care for my health.
It can be silly things sometimes like my Husband never asking what my BG levels or HBA1C are, or when he prepares dinner he throws away the packaging so I have to dig it all out to try & get the Carb count etc.

All of my friends are very much "ooh should you be eating that with your Diabetes" kind of people & I have given up correcting their ignorant comments now!

Just wanted to know if anyone else has faced the same thing & if they were able to help their friends/family adjust to support them better?

Sam x

 

[Juicyj]

Hello @Manfer87 Well you're not alone now as you have now connected here on the forum so have a ready made abundance of friends

Yes I have to fish things out the bin too to do my calculations, however not so often as I do most of the cooking at home. I find it hard at times though, particularly when i'm low or high and so end up blaming my diabetes for it, it sometimes feels like me and my condition can ruin the fun at times, I think it's harder for my daughter as she has to grow up with me trying to manage this daily, and it does impact on your life in so many ways despite careful control and management. I also do struggle with certain family/friends now who don't understand the dynamics of the condition, the ones where I end up having to explain that I don't need insulin if i'm going low (despite having told them countless times before) or discussing the merits of drinking champagne/eating cake and the impact on my BG levels. That aspect I haven't worked out how to manage except to put on my hard hat and body armour to go in prepared when having to spend time with them.

Doesn't stop me from doing anything though, and if anything I enjoy walking/running/cycling as it liberates me from the condition.

 

[Muneeb]

TBH I manage my diabetes independently, the minute you start relying on others for help, the minute you start to lose control. I have found over the years the more I learn and manage it myself the easier it has become.

As much as my parents would try to help, they can never understand it fully (not being diabetics), they do ask how it is every now and then but leave me to manage it how I see fit. I have always just tried to fit it like you as well but you have to look after yourself at the end of the day. I made several lifestyle changes, including gym/exercise and diet, and the rest of the family just started following along. Its always hard to change peoples perception especially when they don't actually know much about diabetes and the difference between 1/2.

This forum is great, but one od my closest friends is diabetic and we are forever bouncing stuff off each other, always helps to have someone to discuss with but not rely on them to control your own health.

 

[Manfer87]

Hello @Manfer87 Well you're not alone now as you have now connected here on the forum so have a ready made abundance of friends

Yes I have to fish things out the bin too to do my calculations, however not so often as I do most of the cooking at home. I find it hard at times though, particularly when i'm low or high and so end up blaming my diabetes for it, it sometimes feels like me and my condition can ruin the fun at times, I think it's harder for my daughter as she has to grow up with me trying to manage this daily, and it does impact on your life in so many ways despite careful control and management. I also do struggle with certain family/friends now who don't understand the dynamics of the condition, the ones where I end up having to explain that I don't need insulin if i'm going low (despite having told them countless times before) or discussing the merits of drinking champagne/eating cake and the impact on my BG levels. That aspect I haven't worked out how to manage except to put on my hard hat and body armour to go in prepared when having to spend time with them.

Doesn't stop me from doing anything though, and if anything I enjoy walking/running/cycling as it liberates me from the condition.

thank you so much @Juicyj I already feel like I'm part of something lovely being able to discuss these things with everyone here.

100% know what you mean about feeling like you ruin the fun sometimes. I feel like my Husband can get really annoyed if a hypo hits when we're out or doing something. I always feel really guilty.

It's amazing how some people just don't listen & you have to repeat yourself time & time again.
I found that I gradually stopped spending time with people because of it.

I found it really strange how my Sister completely changed how she saw Diabetes once she started dating someone with T1D.
She is very quick to tell him not to eat something, or tell other people he can't do something because he is T1.. .. .. Yet over the years growing up with me she didn't take any notice lol.

 

[Diakat]

thank you so much @Juicyj I already feel like I'm part of something lovely being able to discuss these things with everyone here.

100% know what you mean about feeling like you ruin the fun sometimes. I feel like my Husband can get really annoyed if a hypo hits when we're out or doing something. I always feel really guilty.

It's amazing how some people just don't listen & you have to repeat yourself time & time again.
I found that I gradually stopped spending time with people because of it.

I found it really strange how my Sister completely changed how she saw Diabetes once she started dating someone with T1D.
She is very quick to tell him not to eat something, or tell other people he can't do something because he is T1.. .. .. Yet over the years growing up with me she didn't take any notice lol.

Ah, you should see my hubby’s annoyance at having to wait two minutes for me to check bloods before driving. Or his black expression at why I might be eating half a bag of sweets as I try to bring a hypo up!

 

[porl69]

With you on this one
Only another type 1 knows exactly what it is like to deal with this 24/7, not even the DSNs or consultants. Its only over the last 4 - 5 years that I have taken control.
My fiancee is really good BUT she often throws food packaging away. Shes pretty good with carb counting and knows what to do if I am high/low

 

[Manfer87]

Ah, you should see my hubby’s annoyance at having to wait two minutes for me to check bloods before driving. Or his black expression at why I might be eating half a bag of sweets as I try to bring a hypo up!

Haha men ay, they have no patience

 

[Juicyj]

Yes I understand the 'rolling eyes' expression when having to stop to treat or test..

Fortunately though it's a momentary thing, what's made me feel proud is when he meets another type 1 and tells them how well i'm doing (if only he knew the truth, visualise a swan floating across a lake and paddling furiously under water to maintain the vision !)

 

[Manfer87]

With you on this one
Only another type 1 knows exactly what it is like to deal with this 24/7, not even the DSNs or consultants. Its only over the last 4 - 5 years that I have taken control.
My fiancee is really good BUT she often throws food packaging away. Shes pretty good with carb counting and knows what to do if I am high/low

Aww thats brilliant, I am pleased to hear she is on the old carb counting!
I don't think my husband would have a clue.

Maybe I should ask him to do it for me. Next time he cooks dinner, he can tell me how many carbs are in it too.
Is that a bit mean? lol

 

[Manfer87]

Yes I understand the 'rolling eyes' expression when having to stop to treat or test..

Fortunately though it's a momentary thing, what's made me feel proud is when he meets another type 1 and tells them how well i'm doing (if only he knew the truth, visualise a swan floating across a lake and paddling furiously under water to maintain the vision !)

Awwww that is amazing!
for someone to sing your praises like that is just incredible. You must have such a huge smile on your face as he does x

 

[Manfer87]

TBH I manage my diabetes independently, the minute you start relying on others for help, the minute you start to lose control. I have found over the years the more I learn and manage it myself the easier it has become.

As much as my parents would try to help, they can never understand it fully (not being diabetics), they do ask how it is every now and then but leave me to manage it how I see fit. I have always just tried to fit it like you as well but you have to look after yourself at the end of the day. I made several lifestyle changes, including gym/exercise and diet, and the rest of the family just started following along. Its always hard to change peoples perception especially when they don't actually know much about diabetes and the difference between 1/2.

This forum is great, but one od my closest friends is diabetic and we are forever bouncing stuff off each other, always helps to have someone to discuss with but not rely on them to control your own health.

Hi @Muneeb ,

Yes I agree, you shouldn't rely on someone else to manage your health for you. But a little support goes a long way.
For me it does anyway. I know everyone is different, but for me, having someone just ask me what my last HBA1C was is enough to stop me feeling so alone & like I carry the weight of the world on my shoulders.

 

[porl69]

Aww thats brilliant, I am pleased to hear she is on the old carb counting!
I don't think my husband would have a clue.

Maybe I should ask him to do it for me. Next time he cooks dinner, he can tell me how many carbs are in it too.
Is that a bit mean? lol

Go for it BUT you will have to double check.....which, sometimes, doesn't go well lol

 

[Manfer87]

Go for it BUT you will have to double check.....which, sometimes, doesn't go well lol

Oh my word, yes @porl69 I would definitely check it for myself rather than just use his carb count to base my injection on haha.

I won't test him tonight as we're eating out, so tomorrow maybe.

 

[KK123]

I think that diabetes is a very lonely condition. People who don't have it (no matter how much they might try to understand) simply do not get it. They don't get that when you do a test or eat something or drive or leave the house, practically every waking minute is spent trying to prevent hypo's (as they are the immediate danger) or worrying about going high. If someone eye rolls when you are doing these things, you feel like saying ok, when I collapse in a heap on the high street you can cope with the embarrassment of calling an ambulance. My husband is fab but no matter how hard I explain it all, he forgets. It's because he sees me running and eating healthily and on the surface coping well so he thinks that diabetes is easy to cope with, like taking a pill. I have drummed into him the obvious things he needs to know (ie what to do if I'm hypo) but that's it. If you think your partner is interested in carb counting on your behalf or to the same level as you, think again. It's like expecting someone to listen to you banging on about your new diet, BORING. I would say don't expect too much, teach him the basics whilst refusing to put up with his 'annoyance' if you go low, TOUGH, @Manfer87 what would be the point expecting him to ask your latest hb1ac?, would the figure given mean anything to him? This site is here for a reason, all of us KNOW what you mean and try to support each other, try speaking to your husband and maybe tell him you would like him to ask how you are (diabetes wise) now and again. x

 

[Manfer87]

Like Muneeb, I have always been independent with my diabetes management. Maybe because I was living alone for the first 5 years after being diagnosed so just got used to it.
I do most of the cooking like Juicy and sometimes get frustrated when I am trying to cook, test, correct, carb count and dose all at the same time whilst my partner watches or discusses the latest footie results. I am sure he would take over the cooking whilst I do the diabetes stuff but it seems so obvious that it annoys me when he doesn't offer. I know, I am being a bit petty.
That said, he has played the "guess how many carbs in this meal" game so knows how it can be challenging and he will read out the nutritional information from the packet if I haven't got my glasses on ... although I have to ask.
@Manfer87 I would definitely get your hubbie to do the carb counting. For the first few times, it might help to do it at the same time (but you don't have to tell him) to check he is not too far out.

@helensaramay I don't think you're being petty at all. I get just as frustrated & all it would take is for him to ask if I wanted a hand, or even to just ask if all is ok & I would feel so much better about it all.

Yeah I will also count the carbs myself to double check, but I won't tell him that haha.
I'd like to see what how seriously he take it if he thinks he is suddenly responsible for how many units I take with that meal & therefore in control of what my BG levels do after it.

Reading that back it sounds a little mean & almost like I am just testing him, but on the other hand I would really like him to get a better understanding of what I do day to day.

 

[MeiChanski]

Hello
I find taking matters into my own hands much easier than relying on someone else. However my bf has been amazing at running as quickly as possible to the shop or to the kitchen to get coke or hypo treatments. He joins in counting carbs with me to make sure my maths is correct. On the other hand, while we manage our diabetes ourselves, it's good to have someone to talk to. I know it is often difficult to get someone who has a functioning pancreas to understand our struggles. While my bf doesn't have diabetes, he has chronic pain everyday because of his clubbed feet, we understand each other to some extent of our difficulties. I often joke around with him saying if you want to swap my feet for your feet and your pancreas for mine, I'm here. (He says it's a no deal because he trip and fall over with my feet) But, a big BUT, this forum and the circle of type 1's have been amazing and we're always here for each other.

 

[Manfer87]

I think that diabetes is a very lonely condition. People who don't have it (no matter how much they might try to understand) simply do not get it. They don't get that when you do a test or eat something or drive or leave the house, practically every waking minute is spent trying to prevent hypo's (as they are the immediate danger) or worrying about going high. If someone eye rolls when you are doing these things, you feel like saying ok, when I collapse in a heap on the high street you can cope with the embarrassment of calling an ambulance. My husband is fab but no matter how hard I explain it all, he forgets. It's because he sees me running and eating healthily and on the surface coping well so he thinks that diabetes is easy to cope with, like taking a pill. I have drummed into him the obvious things he needs to know (ie what to do if I'm hypo) but that's it. If you think your partner is interested in carb counting on your behalf or to the same level as you, think again. It's like expecting someone to listen to you banging on about your new diet, BORING. I would say don't expect too much, teach him the basics whilst refusing to put up with his 'annoyance' if you go low, TOUGH, @Manfer87 what would be the point expecting him to ask your latest hb1ac?, would the figure given mean anything to him? This site is here for a reason, all of us KNOW what you mean and try to support each other, try speaking to your husband and maybe tell him you would like him to ask how you are (diabetes wise) now and again. x

Thank you @KK123 I'd not really thought about it like that.

With regards to him asking about my HBA1C, it's just knowing he cares. That's all I want, is for him to think about what is going on in my life & to want to know about it.

And yes I can absolutely see why this site is here now! I have learnt so much already & I only been here half a day!

I appreciate every ones advise & support

 

[Manfer87]

Hello
I find taking matters into my own hands much easier than relying on someone else. However my bf has been amazing at running as quickly as possible to the shop or to the kitchen to get coke or hypo treatments. He joins in counting carbs with me to make sure my maths is correct. On the other hand, while we manage our diabetes ourselves, it's good to have someone to talk to. I know it is often difficult to get someone who has a functioning pancreas to understand our struggles. While my bf doesn't have diabetes, he has chronic pain everyday because of his clubbed feet, we understand each other to some extent of our difficulties. I often joke around with him saying if you want to swap my feet for your feet and your pancreas for mine, I'm here. (He says it's a no deal because he trip and fall over with my feet) But, a big BUT, this forum and the circle of type 1's have been amazing and we're always here for each other.

Hey @MeiChanski I am very quickly seeing just how supportive this site can be!
I genuinely feel like I've been able to say so much that I must have been holding back on.

That's really good to hear that you & your b/f can understand how you feel to an extent. You can appreciate how difficult day to day life can sometimes be & I think that's important, to just realise that there is something a little different there.

 

[db89]

A bit like Muneeb and helensaramay commented, I very much look after the running of the show when it comes to my Type 1. The people that I'm close to know enough in the basics (they might take a look at carbs on a packet per portion and let me know if I'm lucky) and what to do if there was ever a problem though I wouldn't expect them to ever need to understand the day to day management we do with diabetes. I tend to ask for any information I think I might want if someone else is cooking dinner for example or else it's a guesstimation based on what I'm told beforehand.

I wouldn't really talk ratios, carb counting, bolus timing and all the other jargon we've got outside of in discussion here or with my team at the clinic unless it comes up in conversation or someone asks for some information about some aspect.

 

[becca59]

I feel blessed! My wider family understand and support. Unluckily for my brother he forged the way 30 years before me. Obviously he understands and supports in spades and parents are brilliant. My husband and I celebrate our Ruby wedding in December and look after and back each other with most things in our life. Now well into our retirement, he always attends appointments with me, is aware of what I am doing on a daily basis with carb counting and insulin. In the middle of the night a little voice pipes up are you alright if he hears me moving around. A year ago when I was refused the Libre on prescription, (now got it!) he said we will use our savings because retirement would be nothing without you fit and healthy with me. I have to say he too has had health issues in the past for which I supported him. We love each other still, even after all these years and are a partnership, why wouldn’t we support each other.