Husband Type 1 and support required

[heather kennedy]

Hi everyone, my husband is unique case (aren't they all!). He was first diagnosed as Type 1 or 2 nearly 5 years ago aged 29. One of the antibody tests came back as +ve for type 1 but the other one didn't. The general consensus was that he was type 1. He seemed to have a very long honeymoon period and was on Metformin and Glicizide for 2 years. His BG control was/is very tight so much so that he never needed insulin. Then out of the blue he was undiagnosed as diabetic in its entirety. (A medical mystery I know. No one can explain it). We had a blissful 2 years free of diabetes but then 4 weeks ago it all came back again. The whole type 1 / 2 debate continues for us. We have been referred to Exeter for genetic testing.

My problem seems to be the opposite of other partners on here in that my husband takes it all too seriously (I know its serious but his seems extreme), his BG control is too tight. If the BG is too high (and for him that could be an 8) he will not eat or will restrict his diet until its acceptable level, as a result of this he is very lean. He has severe anxiety related to his health (currently seeing a clinical psychologist for this). This has had a massive impact on us and our family.

Is there anyone else out there in a similar situation that I could talk too?

thanks for reading

H

 

[Uller]

Hi Heather, welcome to the forum.

I'm kind of on the other side of what you're seeing. I was diagnosed just over a year ago with type 1. About what felt like half my blood was sent off for testing and the antibody test came back as -ve, and was put on insulin.

Over the course on my year, my insulin requirements have dropped, and without adjusting my units to match my carb intake ( still to do the DAFNE course), I've been trying to adjust my carbs to match or adjust my levels. In doing so, I managed to get myself a telling off from the doctor at my last review when my HBAC came in at 34. I've now had more checks done as the doctor thinks I might not be type 1, but type 2...

I try to keep my levels below 8, but always try not to let it get to me if I get the odd one over. I'll always wait for a bit of a run on highs before thinking of changing anything or reacting as I've come to learn I might just have a bit of a high day, and sometimes low days because of tight control. I find lows are less of a 'worry' because in my head they're easier to correct than highs.

Perhaps you could both get some ideas on what he could eat that would have a minimum impact on his levels on the forum here that would help him increase his weight if he's too lean.

I hope this maybe helps your worries and maybe gives you a bit of a clue into how he's thinking...

 

[HOBIE]

Please tell your hubby WELL done for trying to do his best. Stress of being T1 is at times is bad until you learn to live with it. I have been T1for a few years now but refuse to give in. Us T1 are stubborn . Good luck to both of you & welcome.

 

[Copepod]

Welcome to the forum, Heather. I hope the psychologist can help your husband to adjust his thinking and let go a bit. As a suggestion, it depends on what you both enjoy doing. So, perhaps with a bit more information, we could help you and your husband more.

 

[Bloden]

Hi Heather and welcome.🙂 Sorry to hear about your stressful situation. I was anxious about my BGs (more than I realized) until I started using Abbott's Freestyle Libre flash monitor. I wasn't as anxious as your husband sounds, but it certainly helped.

I hope the psychologist can give him (and you and your family) some relief.

 

[heather kennedy]

Hi Heather, welcome to the forum.

I'm kind of on the other side of what you're seeing. I was diagnosed just over a year ago with type 1. About what felt like half my blood was sent off for testing and the antibody test came back as -ve, and was put on insulin.

Over the course on my year, my insulin requirements have dropped, and without adjusting my units to match my carb intake ( still to do the DAFNE course), I've been trying to adjust my carbs to match or adjust my levels. In doing so, I managed to get myself a telling off from the doctor at my last review when my HBAC came in at 34. I've now had more checks done as the doctor thinks I might not be type 1, but type 2...

I try to keep my levels below 8, but always try not to let it get to me if I get the odd one over. I'll always wait for a bit of a run on highs before thinking of changing anything or reacting as I've come to learn I might just have a bit of a high day, and sometimes low days because of tight control. I find lows are less of a 'worry' because in my head they're easier to correct than highs.

Perhaps you could both get some ideas on what he could eat that would have a minimum impact on his levels on the forum here that would help him increase his weight if he's too lean.

I hope this maybe helps your worries and maybe gives you a bit of a clue into how he's thinking...

Uller, yip you seem to be similar to my husband, he used to get told off too for HBA1c being too low, and loves a low BG reading much more than a high! His meals are mainly protein with a little veg . He wont eat pasta or rice, at all, and will have the odd baby boiled potato. But if something causes his readings to be higher then he would like he will avoid that food in its entirety. Its just so fustrating

 

[heather kennedy]

Welcome to the forum, Heather. I hope the psychologist can help your husband to adjust his thinking and let go a bit. As a suggestion, it depends on what you both enjoy doing. So, perhaps with a bit more information, we could help you and your husband more.

Thanks for replying- unfortunately hes off the mind set that he cant go out or do anything any more. Cant go out for dinner because he cant eat what he wants, cant go to the cinema because he cant have the snacks that usually accompany it, wont drink alcohol for the same reason. Hes really limiting himself and me by default as to what we can do. He doesn't like to be left on his own so I can out in case he feels unwell. We have a two year old and he doesn't feel capable of looking after her (to give me respite) in case he feels unwell. He has no passion for anything and I don't have the skills to make him think otherwise. Over the years I have tried everything I can to change the mind set (I was the one who pushed for the psychologist) but even hes has limited impact.
Reading this back I'm aware I sound very negative, I'm usually a very positive person but this is having a huge impact on me too.

 

[Lucy Honeychurch]

How very tough for you
It's very complex as this is a mental health issue, which always impact on the nearest and dearest. Hopefully the psychological help will, eventually help.
As for not being able to look after your child, there is no reason he can't do that. I'm on my own with my 2 disabled children most days and manage perfectly well, even taking them to London on my own on the train, and lots of other places

 

[heather kennedy]

How very tough for you
It's very complex as this is a mental health issue, which always impact on the nearest and dearest. Hopefully the psychological help will, eventually help.
As for not being able to look after your child, there is no reason he can't do that. I'm on my own with my 2 disabled children most days and manage perfectly well, even taking them to London on my own on the train, and lots of other places

Hi Lucy, Thanks for your reply. As you said it's a now a much more complicated issue with the anxiety involved. If he says he doesn't feel capable of looking after our child then I can't in all good conscious leave- id be worried sick.

 

[Amigo]

I really feel for you and your husband Heather. Has he always had a tendency towards obsessiveness and need for control in other things or is it entirely related to his diabetes? Perhaps he has a general health anxiety condition? This places so many restrictions on you as a couple and a family. Presumably you've tried sitting him down and explaining how all this is impacting on you?
If the psychologist isn't making much of an impact on him, I'm wondering if there's any kind of support group. It seems that your husband just can't get things into perspective and fears every little blip. This is such a difficult psychological issue to overcome but I really hope you and he can find a way.
I'm sorry I can't offer any other suggestions but please take care of your own psychological needs too as this must be very hard on you. You don't need two toddlers to care for, you need your husband to get some perspective and take himself out of victim mode because it's a massively disproportionate response. Best wishes.

 

[heather kennedy]

I really feel for you and your husband Heather. Has he always had a tendency towards obsessiveness and need for control in other things or is it entirely related to his diabetes? Perhaps he has a general health anxiety condition? This places so many restrictions on you as a couple and a family. Presumably you've tried sitting him down and explaining how all this is impacting on you?
If the psychologist isn't making much of an impact on him, I'm wondering if there's any kind of support group. It seems that your husband just can't get things into perspective and fears every little blip. This is such a difficult psychological issue to overcome but I really hope you and he can find a way.
I'm sorry I can't offer any other suggestions but please take care of your own psychological needs too as this must be very hard on you. You don't need two toddlers to care for, you need your husband to get some perspective and take himself out of victim mode because it's a massively disproportionate response. Best wishes.

Thanks for getting back to me. The anxiety has only raised its head a result of the original diabetes diagnosis (5 years ago) and only seems to be in relation to health issues. Everything else you have said is 100% true and yes I have tried everything you have suggested but with very little impact. I agree that I need to look after myself and looking for support on here was my first step. People who have no experience of diabetes diagnoses don't seem to realise the impact it can have on the person diagnosed and their family. My work have been brilliant- letting me take time out to attend all appts with him, but in reality what else can people do to help except listen to me complain?

 

[Amigo]

Thanks for getting back to me. The anxiety has only raised its head a result of the original diabetes diagnosis (5 years ago) and only seems to be in relation to health issues. Everything else you have said is 100% true and yes I have tried everything you have suggested but with very little impact. I agree that I need to look after myself and looking for support on here was my first step. People who have no experience of diabetes diagnoses don't seem to realise the impact it can have on the person diagnosed and their family. My work have been brilliant- letting me take time out to attend all appts with him, but in reality what else can people do to help except listen to me complain?

You sound very level headed and supportive Heather. I'm glad your work are being helpful and hope you have others who can support. Please feel free to come on here anytime for support and understanding.