Type 1 partner uncontrolled diabetes

Hi Kat and welcome to the forums.

Sadly, your story is not uncommon. The constant routine of testing and injecting can become a severe drag and for a few people this leads to burnout and not caring what happens to yourself.

As you have recognised, an A1c of 12 (I assume this is mmol) is too high and is likely to lead to complications in the longer term, so you are right to be concerned.

Tiredness is a side effect of high glucose levels, basically there is insufficient insulin to allow the body to use the glucose for energy, so tiredness and lethargy often result.

What's less understood is the effect of high glucose levels on one's emotional state. Many of us would testify to becoming sad and or bad tempered with constantly high glucose levels. Fortunately this usually goes away quite easily when levels come down. In the meantime though this can make you less likely to care about yourself and it's not an easy cycle to break.

For myself, trying to avoid long term complications keeps me fairly well motivated, is your fella aware of the risks?

It sounds as though he might benefit from a help group if you have access to one. But you obviously will not find it easy getting him there. Can you get him on here and reading these pages?

Best wishes
Urb.

I will tag a few T1 colleagues into this. @Marie 2 @Juicyj @Diakat @therower @Antje77 @Ellie-M @kitedoc who may have something to add.

Kat2105 said:

Thank you so much for this.

He's constantly just lethargic, and at a very flat level most of the time. Occasionally he will just randomly drop to like 3.0 or 3.2 and whilst I'm then worrying and know it's very dangerous territory, he is just very "oh well- it is what it is" mentality. It makes me think that over 10 years of just going off feelings has contributed to this rollercoaster, but I'm not sure how accurate this is. I know he doesn't count carbs either, but I'm ignorant to that side of things other than basic research.

I don't think he would go to a support group as he is so introverted.. I've linked him to a couple of threads before, and I know he knows the side effects...but I don't know if it's a depression, or what it is, which gives him such an "oh well" towards it.

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A couple of things I get from this....

What insulin is he using? Does he get a lot of sudden lows? Is he trying to avoid these by staying high? A different insulin might make a difference here but carb counting and knowing one's insulin to carb ratio is very important.

Ultimately there is one course of action you could take which would take a lot of guts on your part and which could easily backfire (so listen to me at your peril), and that's to tell him that you can't hang around watching him kill himself. Maybe save this one for when all other options have been explored and exhausted.

Hi @Kat2105
It’s very hard to watch someone you love struggle. Ultimately diabetes is a self managed condition and he’ll have to find his way.
You can support him by going to appointments if he likes that, or by being of help when he is low.
With luck he will wake up to the damage he is doing to himself and the worry that this causes you. If he will post here or even read he can see that all is not lost and although diabetes is difficult it can be tamed if we use the tools available.

Kat2105 said:

he has said he is willing to start doing things properly... I just am not sure if he even knows what properly is or where/how to start

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The first bit is great to hear and the second bit not surprising, if he's been plodding along for 10 years just doing the same old stuff and not really being on top of it I suspect he's got into a routine where he's able to survive ok (but not thrive), and as you say he thinks 'it is what it is' - it's not!

Can I suggest you/he buys the book 'think like a pancreas' (and read it obviously) - that may make him realise he can control it rather than it control him - he'll feel like a new man once he tames it.

The thing is, he will have to care to change? At 29 we all had a tendency to think we were invincible and he probably doesn't recognize any side effects of bad control. First his mood will improve with better control, high blood sugars make you more prone to depression. Not taking enough insulin for the food you eat means you're not actually properly being able to use that food as energy, hence being fatigued and tired.

Running high blood sugar levels means his blood is too thick, think of it as water going through a strainer and how easily it does so, now think of thick syrup and how it doesn't and that is how blood is trying to flow in his body.

Maybe you can approach him with the idea to give you a month of keeping better track and dosing to see if he feels better, and hopefully he improves and feels better and wants to continue, offer to help him figure out dosing etc, that you will do it together.
I'm not sure it will work but it's probably worth a try.

He has to change those sugar levels, our bodies seem to be able to put up with a certain amount but eventually it will start taking a toll. The effects can be numerous and nasty. I would try to see if he would get a CGM, continuous glucose monitor, he wouldn't have to finger stick to test to find out what level he is at all day long. The Libre as mentioned before is a good place to start.

Going back to the basics is probably the best. He needs a basal, long acting insulin that will make up for what his liver produces. The idea being that if he doesn't eat for a day his blood sugar level with stay fairly consistent. Then he needs a bolus insulin, a fast acting insulin that he takes with food. Go a little easy at first, you should be able to judge some by what he's taking already, but he probably will feel weird "hypo" feelings at lower but more normal numbers, because he's not used to it.

If you can read the book mentioned above by @slip, think like a pancreas, it will help you with guidelines to follow.

Kat2105 said:

Thank you so much for this.

He's constantly just lethargic, and at a very flat level most of the time. Occasionally he will just randomly drop to like 3.0 or 3.2 and whilst I'm then worrying and know it's very dangerous territory, he is just very "oh well- it is what it is" mentality. It makes me think that over 10 years of just going off feelings has contributed to this rollercoaster, but I'm not sure how accurate this is. I know he doesn't count carbs either, but I'm ignorant to that side of things other than basic research.

I don't think he would go to a support group as he is so introverted.. I've linked him to a couple of threads before, and I know he knows the side effects...but I don't know if it's a depression, or what it is, which gives him such an "oh well" towards it.

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Sad to hear that he doesn't want to look after himself and I am sure the physiological consequences of 10 years of high bgs will have something to do with this.
The thing is you've got a choice to be in the relationship and he has to understand what the impact on your life now and in the future, is and will be if he continues to fly his diabetes by the seat of his pants. He will eventually crash with a complication of some kind or other and you are not his mother (unless you want to take the naggy role permanently).
I know it is easier said than done to have a tough talk but it might work. My husband pulls me up when I start attending a pity party about how bad type 1 is which isn't to say he is not supportive but the best way is to ask how can you help him better manage good diabetes habits e.g. would it help if I remind you to test before a meal, would it help if we didn't keep sweet treats in the house? He has to give you permission to help but has to want to change also.
If he is not, I'd walk away.

Hi. Yes, he should be injecting (Bolus) every time he has noticeable meal which generally means 3 times per day plus the daily one (Basal). It sounds like he isn't injecting at each meal but just choosing morning and afternoon which isn't the right approach. He should be adjusting the amount of Bolus at each meal and a rough guide is 1 unit of insulin to every 10gm of carb at that meal.

Hi!
Hoping you can talk him into a Dexcom G6 or. Libre.
If he is a geeky kind of guy it will be fun for him to get a number every 5 minutes he will have to reduce his number slowly. I remember when I started paying attention and when you have let your number be higher than normal, a regular ‘normal’ number feels like a low. He will feel sooo much better when he is under control. His eyesight will improve, energy, everything!
He will have to limit his carbs, but hey, it isn’t so terrible. Think of it like a game challenge!
Keep us posted if you wouldn’t mind. We are happy to help!

Kat2105 said:

Hi everyone!

My partner (29, male), has type 1 diabetes, however after much nagging from me (Which I hate and feel awful about), he has finally started to test again.

What concerns me, is he hasn't tested at all for the last 10 years. He has simply gone on "gut feeling". His last hba1c was 12 (we are in australia), and for the most part, his readings are always around the 12, 13mmol mark when he tests, sometimes going up to between 17 and 22. I know that he is only testing once or twice a day, and I am so so so concerned that this is all going to be doing him some significant damage. He already has no energy all the time, and I wonder if this is a result.

I just was hoping for some guidance on how i can help, if i can help, what the effects of not testing for so long would be, and where he should be going from here?

Any comments or advice would be really appreciated, I love this man, and want to spend our lives together, but I'm so scared.

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Hello,
Sending you lots of hugs! I feel like your partner is possibly going through some kind of unaddressed form of diabetes burn out. I would urge you to get him seen by his team to have care put into place because he is high and running high isn’t fun for himself and you. I unfortunately feel like libre or CGM would overhelm him with data, like he wouldn’t know what to do and possibly react to every number or feel worse by seeing he is high all the time. With the libre, he would need to scan to get a result and with a CGM, you’ll get a reading every 5 mins. But it does help ease his mind or anyone else’s mind of having to finger prick everyday. He would need to be educated by his diabetes team like a carb counting course to possibly understand his data. A carb counting course would definitely be a starting point in trying to identify if his basal rates are correct and help with insulin for food. For the mental side of things, professional help is a simple talk with his team and his team can refer him for help or a trip to his GP.

Hi @Kat2105, i live in Adelaide.
Sadly your partner is not the only one in history who has or is ignoring their diabetes condition. And as humans we do not always accept responsibility for ourselves.
One could say that it is up to each of us to be careful and mindful of ourselves regarding our health and that people who do not are ‘bad’.
In fact even today some health professionals still criticise diabetics for ‘poor’ or ‘bad’ control without any understanding of how difficult it can be to live with diabetes ( or for their family, partners etc to live with them)!!
Having been on insulin for 53 years i have seen some improvement in attitudes towards diabetics but not much.
Whether your partners is amenable to some counselling under the Diabetes care plan or Mental health care plan via his GP is one thought. As perhaps finding out how he came to be managing his diabetes as he presently does might help to resolve some issues.
On the otherhand, we all know that Aussie males can be pig headed and easily influenced by their mates. Finding mates that are more supportive of a healthier lifestyle is not always easy but still worth considering,
Finding local diabetics in his area via websites ( capital cities have them for example) as well as Aussie-wide ones might help him to better understand what helps others and to provide him with some support in any endevour to improve his diabetes control.
Sometimes an ‘emotionally corrective ‘ moment might help, such as information about the risk of diabetes complications if he does not ‘pull his head in’. For example, eye problems or kidney problems, or to ‘target’ a more sensitive area , the very teal risk of becoming sexually impotent.
Finding a health professional who he can relate to but who will be able to see through any BS and still motivate him could be your best ally. Not an easy task but local type one or Aussie wide groups might have some recommendations.
Best Wishes.

Kat2105 said:

Hi everyone!

My partner (29, male), has type 1 diabetes, however after much nagging from me (Which I hate and feel awful about), he has finally started to test again.

What concerns me, is he hasn't tested at all for the last 10 years. He has simply gone on "gut feeling". His last hba1c was 12 (we are in australia), and for the most part, his readings are always around the 12, 13mmol mark when he tests, sometimes going up to between 17 and 22. I know that he is only testing once or twice a day, and I am so so so concerned that this is all going to be doing him some significant damage. He already has no energy all the time, and I wonder if this is a result.

I just was hoping for some guidance on how i can help, if i can help, what the effects of not testing for so long would be, and where he should be going from here?

Any comments or advice would be really appreciated, I love this man, and want to spend our lives together, but I'm so scared.

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I know it's tough watching someone you love not take care of themselves.

I was diagnosed with T1D in 1986 and for most of that time, i was just like your man, unmanaged, going by my gut feeling, checking my BG maybe 6 times a week. I also took the long-acting insulin (plus boluses, when i bothered) with syringes and it was brutal (all of it).

Somebody else said it but it bears repeating, diabetes is a self-managed disease... nobody can do it for you or make you want to do it. "You can lead a horse to water but you can't make it drink." I HATED checking my BG, like i can't explain how much i hated, no loathed it. Why? Because i had the perception that it didn't give me enough bang for the buck.

The change for me was the Continuous Glucose Monitor (CGM), which will check your BG every 5 minutes and show the graph on your cellphone. It's the difference between watching a movie and a slideshow. They can be expensive depending on your insurance but are SO worth it. Now im woken by alarms in the middle of the night for lows and have quick feedback if i didn't give enough bolus for that pasta. There are many systems, i would recommend inquiring about what system(s) your insurance provides.

The insulin pump was the other half of the equation, as i can now bolus without having to get my supplies, sterilize the site, draw insulin.... yadda yadda... i just pull a thing that looks like a pager out of my pocket, push some buttons and i'm bolused. And nobody is the wiser for it.

PS: whoever said use your relationship to try and get him to change is dead wrong. If you legitimately can't stand to watch him treat himself this way, that's up to you but threatening to leave if he doesn't manage his glucose levels will only work temporarily, if at all. HE has to want to do it, otherwise, both you AND he will resent each other over it.

I take you at your word you want to spend the rest of your life with him. The best thing you can do is help to create an environment where he feels like he has some efficacy in managing his condition himself. It's possible that once his glucose has been under control for a while he will feel the benefits. I know i did.

I wish you both the best!