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Hi, partner of an awesome T1 here

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

Karolyn

New Member
Relationship to Diabetes
Carer/Partner
Hi
My other half of 2 years is Type 1, i'm here mostly to get ideas on how to support him! 🙂 I worked at our regional Diabetes unit for a good few years some time ago so i've got the mechanics of it, and generally he's really well controlled, but recently he's been telling me about when he was diagnosed and he seems to have had quite a negative experience, focussing on what he cant/wont be able to do. He gets down sometimes, even saying he expects to go before me (hes only 40). I let him lead with what he needs but i'll be interested in other people's experiences of what sort of emotional and practical support they found helpful!
 
Hi and welcome.

Really good that you want to support your partner and have a bit of knowledge from previous work experience.
Has your partner been diagnosed a lot of years or still fairly new to diabetes? Diabetes shouldn't stop him doing anything much unless he wants to be an astronaut or such like, so I wonder what he has been told he can't do and by whom?

Who does the cooking in the household? If you do some/all of it, then perhaps learning how to carb count so that you can provide him with a good estimate of the carbs in his meals would help him and take a bit of the strain off him. Also having a few hypo treatments in your handbag/pockets for those very rare occasions when we get caught short with not enough in our own possession.

I think @everydayupsanddowns has an etiquette list which helps nearest and dearest to support without interfering which can be a fine line as I am sure you realise from your comment about letting him "lead". It is pretty much an individual thing though because some of us are much more independent than others.
 
Karolyn said:
Hi
My other half of 2 years is Type 1, i'm here mostly to get ideas on how to support him! 🙂 I worked at our regional Diabetes unit for a good few years some time ago so i've got the mechanics of it, and generally he's really well controlled, but recently he's been telling me about when he was diagnosed and he seems to have had quite a negative experience, focussing on what he cant/wont be able to do. He gets down sometimes, even saying he expects to go before me (hes only 40). I let him lead with what he needs but i'll be interested in other people's experiences of what sort of emotional and practical support they found helpful!
Click to expand...
Hello, & welcome. We make pretty awesome spouses too. 🙂 How long has your partner been diagnosed?
My wife & I have these “mortality talks.” But she’s comforted to know I have a “plan B.” 😉
 
This is the diabetes etiquette card that @rebrascora mentioned:


For myself, I found patience from others most helpful, eg waiting while I test my blood sugar, waiting while I decide what to eat, being patient when I have a bit of a moan, etc.

What annoys me is questions about my blood sugar; asking if I’m low when I’m just being grumpy/thinking/sad; not waiting when I need time after a hypo - those kind of things. I particularly hate “Are you ok?” every time I stop to make a decision, daydream, drop something, etc etc. There’s a thin line between justified concern and attributing every blink, sneeze or hesitation to blood sugar.
 
Great that you want to be able to support your partner and I am pleased that you have found the forum.

These are things that I have found VERY helpful from my OH
  • I get given the carb count of the meals he cooks, and a thirty minute warning so that I can pre-bolus. We take a week on week off approach to cooking. I am far worse at pre bolusing on my weeks to cook as I get engrossed in what I am doing and just forget to do it
  • When I am trying to work out why something has gone wrong rather than sort out the problem first, he reminds me that ‘I need what I need’ so sort it out and then we can work out why.
  • If I get stressed about my TIR being a bit off he reminds me that it not surprising if : I am feeling rough/have eaten larger meal/…
  • If I realise that I have not topped up my hypo treatment by the bed he will go down and do the top up for me.
  • On the rare occasions where I have had a hypo when I have the car with me, if it is near enough he has cycled over to come and drive me back to save me waiting out the 45 minutes
  • He will carry my spares (cannulas/back up pens/…) to save me carrying a larger bag. JBs are still with me.
  • He is there for when I just need a rant about having diabetes.
He has learnt a lot over the years supporting me from diagnosis. Small things make a lot of difference.
 
Inka said:
For myself, I found patience from others most helpful, eg waiting while I test my blood sugar, waiting while I decide what to eat, being patient when I have a bit of a moan, etc
Click to expand...
I had forgotten that one, as I have got so used to OH happily sitting out a hypo. On long walks if I say we need to stop there is no question, and he doesn’t suggest we go on a bit to see if there is a better place to stop for lunch.

I was walking with some friends who were used to this feature of our walks, and a new person joined the group. When I said I needed to stop, all the others just got out mats, snacks and drinks without questions. This person told me it was rather inconvenient. I was pleased when one of the others said ‘not as inconvenient as having Type 1’. I do understand that if you are not familiar with D it is hard to know the importance of stopping.
 
rebrascora said:
Hi and welcome.

Really good that you want to support your partner and have a bit of knowledge from previous work experience.
Has your partner been diagnosed a lot of years or still fairly new to diabetes? Diabetes shouldn't stop him doing anything much unless he wants to be an astronaut or such like, so I wonder what he has been told he can't do and by whom?

Who does the cooking in the household? If you do some/all of it, then perhaps learning how to carb count so that you can provide him with a good estimate of the carbs in his meals would help him and take a bit of the strain off him. Also having a few hypo treatments in your handbag/pockets for those very rare occasions when we get caught short with not enough in our own possession.

I think @everydayupsanddowns has an etiquette list which helps nearest and dearest to support without interfering which can be a fine line as I am sure you realise from your comment about letting him "lead". It is pretty much an individual thing though because some of us are much more independent than others.
Click to expand...
Hi, thanks for your welcome and reply!

He's been diagnosed 19 years so he's pretty good at it, he's had a Freestyle Libre monitor for about a year now too which has made things easier. As to things he cant do, I think it was mostly job related (no long distance driving, jobs with blanket exclusions such as fire service etc), some sports. I was surprised it was pitched to him like that, i remember always telling our patients not to let it stop them, just be aware and take precautions.

I mostly cook at mo, that's a bit of a sticking point as he's a really fussy eater!! I've always got glucose shots and haribo in my bag and there's supplies by the bed for when he wakes up in the night.

Thanks for the advice on the etiquette list, i'll have a look! He is pretty independent, he did accept my offer to go to an appointment with him for moral support recently though! 🙂
 
Satan’s little helper said:
Hello, & welcome. We make pretty awesome spouses too. 🙂 How long has your partner been diagnosed?
My wife & I have these “mortality talks.” But she’s comforted to know I have a “plan B.” 😉
Click to expand...
Hi!
He's been diagnosed 19 years now (i'll not mention the spouse bit to him just yet :D)
I've told him I fully expect him to pick up his Alan Nabarro medal at the very least and i'm 4 years older than him! I'm glad other people have these talks too, it did worry me a bit the first time he mentioned it!
 
SB2015 said:
Great that you want to be able to support your partner and I am pleased that you have found the forum.

These are things that I have found VERY helpful from my OH
  • I get given the carb count of the meals he cooks, and a thirty minute warning so that I can pre-bolus. We take a week on week off approach to cooking. I am far worse at pre bolusing on my weeks to cook as I get engrossed in what I am doing and just forget to do it
  • When I am trying to work out why something has gone wrong rather than sort out the problem first, he reminds me that ‘I need what I need’ so sort it out and then we can work out why.
  • If I get stressed about my TIR being a bit off he reminds me that it not surprising if : I am feeling rough/have eaten larger meal/…
  • If I realise that I have not topped up my hypo treatment by the bed he will go down and do the top up for me.
  • On the rare occasions where I have had a hypo when I have the car with me, if it is near enough he has cycled over to come and drive me back to save me waiting out the 45 minutes
  • He will carry my spares (cannulas/back up pens/…) to save me carrying a larger bag. JBs are still with me.
  • He is there for when I just need a rant about having diabetes.
He has learnt a lot over the years supporting me from diagnosis. Small things make a lot of difference.
Click to expand...
 
He def sounds like a keeper! 🙂

I tend to carry the supplies as i've got a small backpack rather than have him load his pockets up, added bonus of I can carry sweets in to sports venues and blame it on him...... :D
Ive said I'll have to learn to drive an automatic car in case that happens to him!

Thanks for your reply, its great to know!
 
Inka said:
This is the diabetes etiquette card that @rebrascora mentioned:


For myself, I found patience from others most helpful, eg waiting while I test my blood sugar, waiting while I decide what to eat, being patient when I have a bit of a moan, etc.

What annoys me is questions about my blood sugar; asking if I’m low when I’m just being grumpy/thinking/sad; not waiting when I need time after a hypo - those kind of things. I particularly hate “Are you ok?” every time I stop to make a decision, daydream, drop something, etc etc. There’s a thin line between justified concern and attributing every blink, sneeze or hesitation to blood sugar.
Click to expand...
Thanks!!

We have a joke with the are you ok thing, "you ok?, Yup, you?, I'm ok, you" mind, its usually me daydreaming and dropping things..........
 
If your boyfriend as had diabetes for 19 years and pretty good at it, it sounds to me as if he needs gentle help more with the "mortality" side of things than the practicality. I was diagnosed about the same time and I am staunchly independent. If someone tries to take over the practicalities of things that I have been doing very well by myself for myself for the last 20 years, it would really annoy me.
However, your boyfriend's comments about "going before you" and feeling he can't/won't do things because of diabetes are concerning, especially if he is pretty good at the day to day diabetes thing.
I think we all get down about having a chronic disease but what keeps me motivated are being reminded of people in the media with Type 1 doing amazing things. Whether it is Ed Gamble the comedian or Henry Slade the England Rugby player or James Norton the actor, I feel if they can do all the things they do, I should be able to do what I want.
Is it possible to remind your partner about some of these guys?
And when it comes to the lifespan thing, I think the statistics are real downer and misleading because they have to be based on historic data from people living most of their lives without CGMs or pumps or basal-bolus insulin etc.. Personally, I plan to live as long as everyone else. Maybe finding out details like how many people have the various medals would highlight how people have lived for 50, 60, 70 or even 80 years with diabetes so why shouldn't your partner?
 
Karolyn said:
Hi!
He's been diagnosed 19 years now (i'll not mention the spouse bit to him just yet :D)
I've told him I fully expect him to pick up his Alan Nabarro medal at the very least and i'm 4 years older than him! I'm glad other people have these talks too, it did worry me a bit the first time he mentioned it!
Click to expand...
Meh, unfortunately. My wife lost her folks. So it’s a topic she brings up. Nobody is getting any younger. We talked about “hypothetical” marriage one night after a few drinks, (15 years ago?) & it got out of hand. Support in a partnership is a 2 way street.
 
helli said:
If your boyfriend as had diabetes for 19 years and pretty good at it, it sounds to me as if he needs gentle help more with the "mortality" side of things than the practicality. I was diagnosed about the same time and I am staunchly independent. If someone tries to take over the practicalities of things that I have been doing very well by myself for myself for the last 20 years, it would really annoy me.
However, your boyfriend's comments about "going before you" and feeling he can't/won't do things because of diabetes are concerning, especially if he is pretty good at the day to day diabetes thing.
I think we all get down about having a chronic disease but what keeps me motivated are being reminded of people in the media with Type 1 doing amazing things. Whether it is Ed Gamble the comedian or Henry Slade the England Rugby player or James Norton the actor, I feel if they can do all the things they do, I should be able to do what I want.
Is it possible to remind your partner about some of these guys?
And when it comes to the lifespan thing, I think the statistics are real downer and misleading because they have to be based on historic data from people living most of their lives without CGMs or pumps or basal-bolus insulin etc.. Personally, I plan to live as long as everyone else. Maybe finding out details like how many people have the various medals would highlight how people have lived for 50, 60, 70 or even 80 years with diabetes so why shouldn't your partner?
Click to expand...
I guess by practical things i mean small things so he knows I'm there when he needs me. I know how annoyed i get when people try and take over things i can do perfectly well. Im a backup not in charge. I mentioned Henry Slade to him! And ive made sure he knows about one of my scuba diving buddies whos had type 1 for around 40 years and still dives all over the world You're right about the historic data, one article that came up (american) stated that "people with type 1 diabetes are now living in to their 50''s" his consultant gave a 50 year medal to a gentleman a few weeks ago. I've told him he has to live at least as long as me cos no-one else would put up with my antics .....
 
Karolyn said:
Hi
My other half of 2 years is Type 1, i'm here mostly to get ideas on how to support him! 🙂 I worked at our regional Diabetes unit for a good few years some time ago so i've got the mechanics of it, and generally he's really well controlled, but recently he's been telling me about when he was diagnosed and he seems to have had quite a negative experience, focussing on what he cant/wont be able to do. He gets down sometimes, even saying he expects to go before me (hes only 40). I let him lead with what he needs but i'll be interested in other people's experiences of what sort of emotional and practical support they found helpful!
Click to expand...
I got it when I was 16. I assumed I would be dead before I was thirty. Now I've had it for 68 more years and I'm feeling fine, very happily married for over 40 years, sing in a choir for last 20 years, had an allotment for about the same time and still make furniture. You have to have a sense of humour because diabetes doesn't work the way it is supposed to, so there is always a lot of worrying and a fair bit of anxiety, but I have just found the closed loop system life-changing for the better. I was getting a bit burned out before that, but not anymore. You can do it together.
Adam
 
I think impending doom strikes us all from time to time.

And diabetes can be very energy sapping and frustrating to live with. A year or two ago I was pondering about the ‘no days off’ nature, and I realised that it’s actually the variability and constant re-tweaking of approaches that is what exhausts me most. If I have a week where I just have to carb count, take the suggested doses and have it work every time it pretty much feels like not having diabetes at all!

www.everydayupsanddowns.co.uk

Diabetes days off

Reminiscing about times when it has almost felt like type 1 diabetes was giving me a day (or week) off.
www.everydayupsanddowns.co.uk www.everydayupsanddowns.co.uk

There’s never been a better period in history to live with T1. The tech and treatment options now make better glucose-management more possible then ever (and with potentially less treatment burden).

We all have to go sometime. Make the best of the time and opportunities we have, while we have them 🙂
 
I 'arrived' at diabetes via a cancer I wasn't really expecting to survive. I did expect to be more grateful and positive than I actually am rather than finding it all a struggle.

I've made a point of not reading up on the mortality as emotionally not sure I was ready for it but bits do slip in. I think as someone mentioned above a lot of the information is out of date and before all the improvements in technology. I do find it mentally tiring especially on a day like today where I've had two sudden lows in the 3s despite taking far less insulin than I needed for the carbs. Had to stop what I was doing and now munching on skittles and waiting 30 mins. The not knowing why something like this happens is what I find frustrating rather than the actual lows/highs themselves.

I've not really discussed it with my partner (now wife) although we did start on the financial planning after the cancer diagnosis - hence the not so romantic marriage proposition. Not sure she's ready for a another conversation about things that might kill me off or make less able/active. She's just being very patient 🙂
 
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