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Help and advice needed!

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098

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My partner was diagnosed as a type 1 in July 2014 whilst travelling in New Zealand. He was hospitalised for 5 days. We have only recently received support through the NHS with a dietrician however my partner is still struggling.
Most evenings he will forget to take his insulin and often goes several days without testing his blood sugar levels. He very rarely measures the amounts of carbs in his meals. Its really worrying me that he is in denial. I have tried the the harsh approach and also layed off him for a bit but it makes no difference.
He often works 10-12 hours 6 days a week so is always tired. He often suffers from long periods of thrush. All i believe are linked with uncontrolled diabetes.
Can anyone offer any guidance or support so that i can support him more? Thanks.
 
Your partner more than likely is aware of the horrendous complications that T1D has to offer? Unfortunately many people in your partner's shoes only come to realise how reckless and foolish they've been when it's far too late...

I'd get him to have a read through this, and more importantly - look for images of each complication:

http://www.diabetes.co.uk/diabetes-complications/diabetes-complications.html

I'm sorry if that sounds blunt, but it's the cold, hard truth. If a 5 day hospital stay (I'm assuming from DKA) is not enough warning that he needs to buck up his ideas, then there will be no telling him...

What about seeing some sort of counsellor? I'm afraid I cannot offer any advice here as I'm not familiar - but I'm sure something like that exists.

Are his diabetes care team (DSN, Dr, dietician, etc) aware of his reluctance to accept his condition? You say that you're only getting support from a dietician? In the UK that support almost always extends to a Diabetic Specialist Nurse are Specialist Doctor (or Diabetologist); has your partner ever met with any of the aforementioned?

I hope you're okay, this must be a tough thing to deal with. Have you got someone you can talk to? Diabetes is an illness that impacts the individual extensively. However, it also impacts everyone around us and it's important that we all recognise that.
 
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Hi @098 it sounds like you are providing support very well and welcome to the forum.

Diabetes is largely self managed so your partner needs to take responsibility.

The thrush and tiredness are both related to high sugars. Possibly, if he has a manual job he is worried about going low at work.

Just keep talking to him and encouraging him to look after himself. Perhaps ask him to look at this site? Or ask his diabetes team for some more help.

Hug to you as this must be hard to watch.
 
Hi @098

Yes, the thrush will no doubt be due to,his high sugars. Has he said what's stopping him looking after himself? Is it the thought of a long term condition? Denial that he has it? Struggling to control,his blood sugars so thinking he might as well not bother?

My advice would be to choose your time well and sit down and have a chat with him. It could be he's holding back his feelings so allowing him to vent might help. If he refuses to engage with you, ask him how he'd feel if it was the opposite way round and he had to,watch you harming your health day after day.
 
Thank you for your reply. I think I need another sit down with him to discuss it more. All he has said to me in the past is that its hard and its uncontrollable. He said I don't understand what it is like (when all I do is try to help). I think he has seen a diabetic nurse once who just issued a new monitor. I will try and contact his dietitian to explain the issues we are facing. I think he needs a good sharp shock in the hope that he understands what he is doing to his body. Thanks again for replying
 
Hello and welcome to the site.

Denial can happen with diagnosis, there is a huge amount to come to terms with in accepting his type 1 status, unfortunately taking the hard line will just make him retreat further, can you talk to him about how he feels about this ? Talking and getting him to open up may reveal what's he is really thinking, sometimes people feel by ignoring it that it will go away, however as a type 1 diabetic and living with this condition, if you ignore it then you can become ill very quickly and he will end up in hospital again.

Being diagnosed with type 1 is similar to the grieving process: 1. Denial and isolation; 2. Anger; 3. Bargaining; 4. Depression; 5. Acceptance. Not everyone experiences each of these, some may dwell on one stage more than another or not experience some of the other stages, everyone is affected differently, personally I probably only experienced about 4 and some of them briefly however I suffered depression for a while, I found talking helped as did exercise, meditation.

At some point he will need to confront this as his health is at stake as you know, getting him to open up whether it's to you or a healthcare professional will allow him time to work through this, good luck
 
Thank you for your reply. I know in the past (when he was testing) he was going as low as 2 whilst at work. In the past he has also become very confused in a situation and then can't recall what has happened in those 10 minutes. It is scary for me to watch never mind what that must feel like. I think I will speak to him this evening and show him the replies and this website. Thanks again
 

Hi thank you for your reply. Yes I think he feels that it is uncontrollable so why bother with it. He also says he does not have time for it. I've explained that is no excuse and he needs to find the time. I will be sitting down with him this evening to discuss it all and to show him this post. Thanks again
 
Testing will help him avoid going so low, if he tests when he feels 'odd then he can see if he is high or low and treat accordingly.
 
Hi, Thank you for your reply. In the past he has gone as low as 2 whilst at work (when he was testing). In the past he has gone very confused and then can't recall the previous 10 minutes. This has been scary for me to watch so must be so much worse for him. I think I will sit with him this evening, talk to him again and show him this thread and website. Thanks again
 
Hi @098 and welcome to the forum.

You've had some great advice in the posts above and it sounds like you're doing great supporting him and trying to get him to take ownership of his Type 1. I just wondered if your partner drives or not as you say he sometimes goes days without testing? If so, is he aware of the DVLA's rules regarding driving (test before and every 2 hours during a drive)?

Getting his glucose levels in control would do great things for his tiredness. It wasn't until after I'd been diagnosed and things had settled down I realised just how run down I had really been (I just wasn't registering it).
 
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Type 1 is controllable but he needs the tools to help him control it. A crucial tool is carb counting. If he hasn't been shown how to do that, it's like he's driving a car with a blindfold on. There are two other 'tools' - knowledge and experience. The second he will grow as time goes by, but for the first I recommend the book Think Like A Pancreas - because that's what he has to do. It's an excellent book with a lot of info, but written in a friendly way.

Yes, Type 1 is a lot of work, particularly to start with, but it gradually gets fitted into your life (although he might not believe that now).
 
Hi @098. Trush, tiredness, lots of highs and lows all point to poor control.

From your partners point of view, he must feel awful every day and he naturally blames this on the diabetes. Rather than focusing on diabetes being a life long condition - that's the last thing he wants to hear (he's not alone there by the way!) - ask him to buy in to working with you for a 2 week period where you both try to get better control. He must take his insulin, count carbs, test his sugar levels and record them. Then at the end of the 2 weeks see how he feels compared to before.

Remember, telling someone that he needs to inject, test his sugar levels, count his carbs every day for the rest of his life is pretty daunting and I can understand why he might want to run and hide from the issue. The only way to counteract that is to give him a taste of what controlled diabetes is like compared to uncontrolled. Nothing else will win.

Personnally, I would just focus on short term. I would not get into discussions with him about life long illness or long term complications. Get 2 weeks of good control then talk to him about how he feels and how the good control also helps you.

Helpful tools - carb counting is a pain in the ass! I don't care what anyone says. Who wants to do maths when they are hungry! To make life easier download the app - Carbs & Cals. This app gives you a picture of the food on a standard plate so you can judge how much carbs you are consuming. I also find FatSecret app to be good for counting.

In the 2 week trial period, try and do meals that are easy to carb count - prepare for success!

If you can just get him to focus on the next week and the next week and the next week then the short term demons will go away and the long term demons will never arrive!

Best of luck and keep us posted.

Mark
 
There's no doubt that it's literally at times a pain in the ****.
I'm relatively recently diagnosed in that I was 44 at diagnosis and juicyj has it spot on. It is every much like a grieving process and although I got on with it and took the bull by the horns, I think I spent a year being ****** off and angry about it.
I still go through a range of the cycle but just like grief, the intensity of it lessens.

Do you know/does he know his carb : insulin ratio? I'd take hynes48 advice and tackle a week or a fortnight with him, help him carb count and calculate how much insulin he'll need.
Keep the meals simple and repetitive at first, make a note of if the dose has worked.

I really hope you're able to get through to him.
 
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