Partner Struggling With Diagnosis

[Lynnbob]

My partner was diagnosed 2 years ago as type 1. Since then he’s seen the consultant twice and nurse maybe a handful of times. Continually asks to be put through dafne course as he is really struggling to understand type 1. Feels like he has completely slipped through the system. Over the past 2 weeks his levels have been all over the place and he doesn’t really know how to try to control them. How can I help him best?

 

[therower]

Hi @Lynnbob . Welcome to the forum. Admiration for you wanting to help your partner.
Think like a pancreas. By Gary Scheiner is a good source of information for type 1 diabetics.
Also this forum is probably one of the best there is.
Appreciate it can be daunting asking for help especially if you feel your questions are silly or stupid. Honestly no question stays unanswered for long on here.
We've all been where your partner is and have got the T - shirts to prove it.
DAFNE can have a waiting list and also worth noting that for the first 12/18 months after diagnosis DAFNE will not offer a course due to honeymoon periods and the need for the individual to be in a position where the course will be most beneficial.
Keep in touch with us. I'm sure we'll be able to help

 

[Lynz84]

My partner was diagnosed 2 years ago as type 1. Since then he’s seen the consultant twice and nurse maybe a handful of times. Continually asks to be put through dafne course as he is really struggling to understand type 1. Feels like he has completely slipped through the system. Over the past 2 weeks his levels have been all over the place and he doesn’t really know how to try to control them. How can I help him best?

Hi Lynnbob. Sounds like he needs more professional support. See if he can get another appointment with his consultant to discuss his issues and get to dafne. In the meantime get him to take a look at the bertie course online. He can complete by himself and quite informative. I also found the book "think like a pancreas" to be particularly helpful too.

 

[Lynnbob]

Hi @Lynnbob . Welcome to the forum. Admiration for you wanting to help your partner.
Think like a pancreas. By Gary Scheiner is a good source of information for type 1 diabetics.
Also this forum is probably one of the best there is.
Appreciate it can be daunting asking for help especially if you feel your questions are silly or stupid. Honestly no question stays unanswered for long on here.
We've all been where your partner is and have got the T - shirts to prove it.
DAFNE can have a waiting list and also worth noting that for the first 12/18 months after diagnosis DAFNE will not offer a course due to honeymoon periods and the need for the individual to be in a position where the course will be most beneficial.
Keep in touch with us. I'm sure we'll be able to help

Thanks so much for your reply. My main concern is that I don’t think he checks his levels often enough. It mostly takes a lot of moaning from me for him to do it. I can tell straight away when his levels aren’t right, but according to him he feels fine. Just so worried that he’s going to end up seriously unwell

 

[Deleted Account]

The DAFNE course focuses on carb counting.
A similar course in Bertie online course http://bertieonline.org.uk/ which may give you and your partner some hints.

 

[Lynnbob]

Hi Lynnbob. Sounds like he needs more professional support. See if he can get another appointment with his consultant to discuss his issues and get to dafne. In the meantime get him to take a look at the bertie course online. He can complete by himself and quite informative. I also found the book "think like a pancreas" to be particularly helpful too.

Thanks for your help. Every appointment that has been sent for consultant ends up being postponed. For example he was meant to go last July and it got cancelled until January of this year! It just seems like he is fighting a losing battle. He also has severe pain in both his feet, he has been to gp umpteen times but doesn’t seem to get anywhere. I think because of this he just feels like giving up.

 

[Lynz84]

Thanks for your help. Every appointment that has been sent for consultant ends up being postponed. For example he was meant to go last July and it got cancelled until January of this year! It just seems like he is fighting a losing battle. He also has severe pain in both his feet, he has been to gp umpteen times but doesn’t seem to get anywhere. I think because of this he just feels like giving up.

Oh that's ridiculous!! Could he go to a private chiropodist in the mean time? Just for peace of mind. Definitely try the online bertie course. Helped me immensely!

 

[therower]

@Lynnbob . Denial of diagnosis is common.
The effects of uncontrolled, especially high BS levels are not noticeable in the early stages. Be assured though diabetes shows no mercy.
Sometimes in life we have to shout until we annoy the person we are shouting at they have no choice but to respond. Don't just accept a new appointment date. Tell them that he is struggling, has pain in his feet. Explain you have done research and ask them do they really want to be admitting him to hospital for possible feet problems even amputation. Yes it can get that serious.
Shout, demand and insist that someone gives him basic and helpful information.

 

[Knikki]

Thanks so much for your reply. My main concern is that I don’t think he checks his levels often enough. It mostly takes a lot of moaning from me for him to do it. I can tell straight away when his levels aren’t right, but according to him he feels fine. Just so worried that he’s going to end up seriously unwell

Yep I'm like that, the way my other half gets round it is to simply treat me like a child, basically don't get annoyed with him, it will make things more tricky.

Early on is not easy but being here can be great help and a great place to learn.

Get him to join in as well we all have our up and down days

OOOPPPSSSSS forgot, welcome to the forum.

 

[NicoleC1971]

Thanks for your help. Every appointment that has been sent for consultant ends up being postponed. For example he was meant to go last July and it got cancelled until January of this year! It just seems like he is fighting a losing battle. He also has severe pain in both his feet, he has been to gp umpteen times but doesn’t seem to get anywhere. I think because of this he just feels like giving up.

Hi LynnBob, I think the diabetic consultants are not terribly interested in the practicalities of living with type 1. Mine check through the list of things that can go wrong e.g. feet, kidneys, heart disease etc. so at this early stage it may be more important to get that practical health via his specialist nurse team. Since those nurses are busy too, he will need to get his head around adjusting doses, when to test and how to manage illness.; is he up for that?
So here's another book called Bright Spots and Landmines and it is free (though you can donate) here:
https://brightspotsandlandmines.org/
Btw if he can get to a Dafne course then it they can be useful from both a knowledge and social support - still going to the pub with my Dafne buddies after 10 years and I think diab spouses need some support too!
Re foot checks, I was in a similar situation and got a very thorough diabetic foot check via a podiatrist. Much more thorough than the oen done by the consultant.

 

[LooperCat]

Welcome to the forum, @Lynnbob - as the others have said, denial is so common. A diagnosis like T1 as an adult is such a shock (I was 24) and in a way you go through the classic stages of grief. Mourning the loss of your health and the life you’d imagined for yourself. Denial is first, and can last a long while - then anger, bargaining, depression and finally acceptance. They’re not always consecutive and can come together. I spent years in denial, and have only really accepted it this year. What he feels is normal, although it’s frustrating to live with as the partner of a T1. The other issue we have and it’s so hard to explain) is how out-of-normal-range blood sugars feel. I’m sure he’s told you about hypos, the horrible combination of feeling like you’ve had one too many combined with a panic attack and the need to eat the kitchen while not being in control of your legs, let alone mouth. But high sugars can feel horrible in a subtle way - we feel mentally slow (more glucose in the blood makes it thicker, and our brains really feel that), cranky, irritable and frustrated. A hypo is usually relatively quick and easy to fix - a few jelly babies or a bottle of lucozade will sort it in minutes. Highs can go on for hours, often without reason, so you add in the sheer frustration that no matter what you do, you can’t fix it - well, you get the idea. You get so exasperated that you don’t test - if you don’t know what the number is, it’s fine, right? Like not opening the brown envelope on the doormat that your certain contains bad news, and you keep ignoring them until the bailiffs are banging on your door early one morning.

So. Perhaps with your help to keep on at his team to get on a DAFNE course, or do the BERTIE one together? Education about it is key to managing it properly. Who does the cooking? You can work out the carb content of a meal relatively easily and help him dose for it, assuming he is on two different insulins - a basal (background) one that he takes once or twice a day, and a bolus (quick acting) one he takes with meals.

Keep asking questions here, and we’ll help as much as we can - better yet, see if you can persuade your partner to join

 

[EllieM]

If he doesn't like testing (well, lets face it, no one really likes testing), could you afford to trial the freestyle libre for a bit? It doesn't work for everyone, but if it does work for you it gives 24 hour continuous glucose readings without fingerpricking. Some areas are prescribing it, but it's very much a postcode lottery.

 

[isjoberg]

@Lynnbob something to consider is whether there is another diabetes team nearby which he could be transferred to? This might not be a practical option depending on where you live, but it is something to think about as a possibility. Have a look if there are other clinics in your local area and if they seem good (can always ask here if people have experience with them!) you can ask for him to be transferred

 

[smc4761]

Hi Lynbob welcome to forum

This place is fantastic for advice and has plenty friendly and helpful people. Please feel free to ask any questions you want, there is no such thing as a stupid question. Remember we have all been there

Most important advice I can offer, which gets hammered home at DANE course, is test test and test again. As an absolute minimum should be testing when wake up and go to bed and before each meal

 

[Fairygodmother]

Hi @Lynnbob, it’s so frustrating for you and your partner to be left without proper support!
I think that the problem of the Consultant appointment being deferred isn’t limited to your partner; it’s been happening in the area where I live too, but as a relatively newly-diagnosed T1 he really should be a priority.
I hope that the recommended books and Bertie online will help.
There should be a DSN, a Diabetes Specialist Nurse, that he can see in your GP surgery. If the GP’s not aware of how he can get an appointment to see a DSN then maybe he should find a surgery where this is available.
If he’s worried about his feet, and in pain, then can I suggest calling 111? It may get seeing a Diabetes Consultant expedited, I hope it will, and it may lead to a full examination of his feet.
I don’t know whereabouts in the country you live but if there’s another centre he could ask the GP to refer him to then I agree that it’s something to seriously consider. If you’re near enough to London to travel there then one of the teaching hospitals would be good. If you’re not close to London, try looking online to see which is the nearest teaching hospital?
You say his blood sugars have been all over the place. This could be because he’s coming to the end of ‘the honeymoon period’ the time when beta cells are still being attacked by the immune system and giving up the ghost. If this is so then it’s important that he tests, even though he doesn’t like doing it, and avoids extremes of high and low blood sugars. With any luck, and with the information on the Bertie etc, this will eventually settle down.