New Here And In Desperate Need Of Help

[samtyson]

My partner has type 1 diabetes and I'm so fed up of medical professionals dismissing how Diabetes affects the whole family and not just the main sufferer....

I've struggled with the effects diabetes has had on our family for the last 9 years as in I dread every test result, the constant hospital visits, GP phone calls, the constant changes in medication/ routine whilst juggling 2 girls who'll sometimes say they're scared of their dad when his sugar levels are all over the place, having to deal with friends who dont understand the reason why he becomes snappy is due to his sugar levels and when they're stable he's the most loving, caring person

Just lately he's developed ED and needed a battery of tests on his kidneys due to not seeing a consultant for 3 years due to taking place in the Diasend trial which has made me feel quite anxious and I'm also having to provide a lot of reassurance that just because he has ED it doesn't mean I'm going to run off with another man..... even though I do feel like Simon deserves better as in someone who can better cope with the diabetes

On top of this I also have guilt because what right have I got to feel like this I'm not the one with diabetes which makes me feel more down..... I did ask the diabetic nurses if there was any support groups available but as yet I haven't had a response but accidentally stumbled across this forum



I apologize if this offends anyone as that isn't my intention.... I'd feel even more guilt if it did as I know diabetics have it tough

 

[Fleegle]

I am no expert in this - particularly as I am the other side of the fence.
But I do think you need as much care as your partner. You should talk to your GP and demand some support yourself even if it is just someone to talk to.

I suspect that many partners feel this way - it is like any other condition where there is no obvious cure - that as a family you have to live with it so I am sure you are far from alone.

 

[Norfolkmell]

Life with diabetes is tough on both the person and family members. You are doing a great job, never under estimate your contribution. Have you registered at your GP surgery as a carer? My partner is registered as my carer and he can always get a same day appointment when he needs one without having to persuade the receptionist. I think you've found the right place to vent, look around the site it's full of good unbiased advice and all the forums are very supportive. Don't feel guilty but do speak to your GP about your concerns, that's what they are there for. Does your husband do the low carbohydrate high fat diet, it can have really good results and even out blood sugars and is very easy to follow.
We've just come back from our GP as a blood test showed that my partner has pre diabetes so we will both be sticking to LCHF from now on.
Welcome to the forum, there will always be someone to talk to.
Best wishes and remember that you are doing a wonderful job and drop the guilt, you have nothing to feel guilty about.

 

[Deleted Account]

I can empathise with you - when my partner suffered from depression, I felt very alone. I didn't feel I could complain because I was healthy (and with the stigma associated with mental health, I didn't feel I could information about share his condition).
However, you have nothing to feel guilty about: it is tough living with someone with a serious chronic condition.
Have you spoken to your husband about how you feel (when his BG is stable)? He may not know how you feel ... it may provide some motivation for him to work harder at managing his diabetes. I realise it may also make him feel guilty - only you know how he will take it.

It is worrying that his temperament changes so noticeably when his BG are not stable.
Is there anything that can be done to help with this?
I am sure this has been discussed with his doctors (although maybe not in terms of how it affects those around him) but they may be able suggest something different (like a pump or CGM or changing his diet or ...).

Finally, it is good to have someone for you to talk to.
This forum helps.
Is there a diabetes group in your area? Your husband may not want to attend but I am sure there are some parters attending who you may be able to share war stories and coping techniques with.

Good luck - you are not alone.

 

[samtyson]

Thanks so much everyone I'm so glad to hear I'm not the only one as in a way I feel guilty and selfish for feeling like this... Our diabetic nurse doesn't seem to think a pump will be suitable and at present Simon isn't severe enough for our CCG to fund the Abbott Libre which is annoying as surely you'd intervene before someone reached that stage...

I'll discuss with the GP and also demand to be registered as Simon's carer that way I can get access to the care and support I need

Will discuss the changes in diet with Simon and see if this is something he will consider

 

[Norfolkmell]

so pleased that you've got a plan of action. Please don't hesitate to update and come back if you have a wobble!

 

[Antje77]

the constant hospital visits, GP phone calls, the constant changes in medication/ routine

not seeing a consultant for 3 years

What's he constantly visiting hospitals/ telephoning GP's for? And how do his medications constantly change when not seeing a consultant?

they're scared of their dad when his sugar levels are all over the place

Has your husband followed a course in carb counting and correct dosing? Not saying those of us who have don't have roller coaster days with blood sugar, but it sounds like with him it's worse than with most of us. Maybe there's room for improving?
Would it be worth it to invest in a Libre yourself? If your husband is willing to put a lot of energy in getting better control it would be money well spent.

Hope things will change for the better for all of you!

 

[LooperCat]

I can’t really add a great deal to what's already been said (welcome, btw!) - as the T1 in my own household I know I’m not always aware of how my condition makes my husband and son feel. That being said... my husband has an acquired brain injury, and I’m his official carer, just as he is mine. So I do have some insight into being the “responsible grown up” when a chronic health problem plays up. It’s knackering - always being slightly on edge in case an issue raises its ugly head. It’s all too easy to neglect your own needs when you’re taking care of someone else.

Echoing what has already been said, I can’t recommend a Libre highly enough. Even if it’s just for a short while, the insights it gives are invaluable. Carb counting education really makes a big difference too.

Would he be willing to join the forum? He’ll get loads of support here from people in the same boat, which might make him need to lean a little less heavily on you.

 

[DCUKMod]

@samtyson - I don't really have any wisdom to offer, but just wanted to rreiterate what others are saying - Diabetes isn't a solo sport.

If your husband doesn't qualify for the Libre full-time, would the clinic offer him a trial? That's how many first experience it.

 

[samtyson]

What's he constantly visiting hospitals/ telephoning GP's for? And how do his medications constantly change when not seeing a consultant?


Has your husband followed a course in carb counting and correct dosing? Not saying those of us who have don't have roller coaster days with blood sugar, but it sounds like with him it's worse than with most of us. Maybe there's room for improving?
Would it be worth it to invest in a Libre yourself? If your husband is willing to put a lot of energy in getting better control it would be money well spent.

Hope things will change for the better for all of you!

We are currently trying to get Carb training refresher course as he was diagnosed 1989 at the age of 13 and was the only time he was offered any kind of training... I will look into buying one privately myself as he is desperate to improve but I myself wont tell him how I'm feeling as then I feel selfish as he already has a lot on his plate without me adding too it x

 

[LooperCat]

We are currently trying to get Carb training refresher course as he was diagnosed 1989 at the age of 13 and was the only time he was offered any kind of training... I will look into buying one privately myself as he is desperate to improve but I myself wont tell him how I'm feeling as then I feel selfish as he already has a lot on his plate without me adding too it x

Do consider talking to him about it - I’d be mortified if I knew I was making my husband feel so miserable x

 

[Norfolkmell]

Likewise, you must let him know but choose your time, tell him you're going to sort this together and introduce him to this forum as you are both going to benefit. It can only get better x

 

[Juicyj]

Lots of useful stuff said already - DAFNE or Dose Adjustment for Normal Eating is the current course on offer, it's more comprehensive than just carb counting, it discusses illness, insulin, impact on health etc but it's very useful for whatever stage you are at with your type 1 as you are reviewed on your control during the week and you get the opportunity to change insulins too if it's necessary/ A book I recommend alot is 'Think like a pancreas' written by a type 1.

Things can get better, I know it's hard for partners and loved ones supporting type 1's as it's a frustrating condition being invisible and based purely on what the type 1 is prepared to discuss, so communication is key, best wishes J

 

[Daibell]

Hi. It does look like your husband needs more appropriate medical guidance. It's unusual to keep going to the hospital or having medication changed when T1. I'm guessing your husband perhaps doesn't follow any guidance he has ben given. Does he inject his insulin 4 or 5 times day using two insulins? Does he have sensibly low carb meals? Does he test himself with his meter several times a day. Meal-time carb-counting is very simple and doesn't really need a training course but it does depend on the person. If he is snappy when his sugars are high they must be very high to cause this and indicates his blood sugar control is really bad and he needs far better guidance from his consultant or DN.

 

[lucylocket61]

did something happen 9 years ago to change the way his body reacts to the diabetes? was he relatively stable before then? sending good wishes, my partner has a different health issue, but its hard on the ones being supportive, as well as the sufferers. Please dont feel guilty for being human, and feel free to unload on here if it helps you.

 

[scotteric]

My partner has type 1 diabetes and I'm so fed up of medical professionals dismissing how Diabetes affects the whole family and not just the main sufferer....

I've struggled with the effects diabetes has had on our family for the last 9 years as in I dread every test result, the constant hospital visits, GP phone calls, the constant changes in medication/ routine whilst juggling 2 girls who'll sometimes say they're scared of their dad when his sugar levels are all over the place, having to deal with friends who dont understand the reason why he becomes snappy is due to his sugar levels and when they're stable he's the most loving, caring person

Just lately he's developed ED and needed a battery of tests on his kidneys due to not seeing a consultant for 3 years due to taking place in the Diasend trial which has made me feel quite anxious and I'm also having to provide a lot of reassurance that just because he has ED it doesn't mean I'm going to run off with another man..... even though I do feel like Simon deserves better as in someone who can better cope with the diabetes

On top of this I also have guilt because what right have I got to feel like this I'm not the one with diabetes which makes me feel more down..... I did ask the diabetic nurses if there was any support groups available but as yet I haven't had a response but accidentally stumbled across this forum



I apologize if this offends anyone as that isn't my intention.... I'd feel even more guilt if it did as I know diabetics have it tough

I agree with what others have said. Constant hospital visits and telephone calls are not the norm. Pick up a copy of the Diabetes Solution or whatever it's called by Richard Bernstein. I am not a follower of his diet and do not agree with everything he says, but I agree with a lot of it whether I follow it or not and think he gives a good primer on how the disease works and why it is so difficult to maintain normal blood sugars without restricting diet in some way. I do think what he says works and if I was having trouble I would follow his advice more closely. In fact, whenever I am having trouble with highs and lows the first thing I do is eat very low carb and this stops the rollercoaster.

 

[Alexandra100]

I myself wont tell him how I'm feeling as then I feel selfish as he already has a lot on his plate without me adding too it x

Better to tell, though of course not in an angry, blaming sort of way. Otherwise your feelings may build up until the pressure cooker explodes and you might say things you'd regret or even run away from the whole situation. Diabetes is for life. IMO you all need to find a more acceptable way of living.

Long ago I worked on a unit for terminally ill children. Their parents were counselled NOT to fall into the "poor thing, s/he has to put up with so much, we mustn't be hard on him/her." That would just create an ultra spoilt brat and ensure that the family would actually feel great relief when s/he finally did die! A person can be suffering a lot AND be thoroughly spoilt and selfish.

 

[hodders]

My partner has type 1 diabetes and I'm so fed up of medical professionals dismissing how Diabetes affects the whole family and not just the main sufferer....

I've struggled with the effects diabetes has had on our family for the last 9 years as in I dread every test result, the constant hospital visits, GP phone calls, the constant changes in medication/ routine whilst juggling 2 girls who'll sometimes say they're scared of their dad when his sugar levels are all over the place, having to deal with friends who dont understand the reason why he becomes snappy is due to his sugar levels and when they're stable he's the most loving, caring person

Just lately he's developed ED and needed a battery of tests on his kidneys due to not seeing a consultant for 3 years due to taking place in the Diasend trial which has made me feel quite anxious and I'm also having to provide a lot of reassurance that just because he has ED it doesn't mean I'm going to run off with another man..... even though I do feel like Simon deserves better as in someone who can better cope with the diabetes

On top of this I also have guilt because what right have I got to feel like this I'm not the one with diabetes which makes me feel more down..... I did ask the diabetic nurses if there was any support groups available but as yet I haven't had a response but accidentally stumbled across this forum



I apologize if this offends anyone as that isn't my intention.... I'd feel even more guilt if it did as I know diabetics have it tough

Hi there
Just to ditto all that has been said previously. Just a little something when I did the dafne course there was an option for partners to attend. My husband did and was the only one but he learned plenty. Maybe you could go together and as has also been said you learn much more than just carb counting.
Also my clinic offers a self help talking group for when things get just too overwhelming - like often.
Maybe see if his DSN can advise on this too.
The libre would too be a massive help and if your beloved doesn't mind he could link you in on his phone app too. More ccgs seem now to be offering them on the nhs just keep at it- I did- and hopefully it'll work out.
You sound like an incredible person by the way hang on in there and together with some extra help and support things will get better. Type 1 sometimes feels like a battle especially where the wider public is concerned. We are a uniquely special lot. Good luck.

 

[hodders]

My partner has type 1 diabetes and I'm so fed up of medical professionals dismissing how Diabetes affects the whole family and not just the main sufferer....

I've struggled with the effects diabetes has had on our family for the last 9 years as in I dread every test result, the constant hospital visits, GP phone calls, the constant changes in medication/ routine whilst juggling 2 girls who'll sometimes say they're scared of their dad when his sugar levels are all over the place, having to deal with friends who dont understand the reason why he becomes snappy is due to his sugar levels and when they're stable he's the most loving, caring person

Just lately he's developed ED and needed a battery of tests on his kidneys due to not seeing a consultant for 3 years due to taking place in the Diasend trial which has made me feel quite anxious and I'm also having to provide a lot of reassurance that just because he has ED it doesn't mean I'm going to run off with another man..... even though I do feel like Simon deserves better as in someone who can better cope with the diabetes

On top of this I also have guilt because what right have I got to feel like this I'm not the one with diabetes which makes me feel more down..... I did ask the diabetic nurses if there was any support groups available but as yet I haven't had a response but accidentally stumbled across this forum



I apologize if this offends anyone as that isn't my intention.... I'd feel even more guilt if it did as I know diabetics have it tough

Hi there Hodders again.
Just as an aside you mentioned the effect hypos have on your little girls. I work in a primary school and I have a set of "lifesaving buddies " Each new school year I talk to the children about my condition and show them a couple of clips from YouTube both of which show and talk about children with type 1 (as it is much easier for them to relate to) I am not sure how old your girls are but I am sure there will be something they can relate to. Little kids are amazing when they are informed. Hope this helps. Kind regards.

 

[samtyson]

Better to tell, though of course not in an angry, blaming sort of way. Otherwise your feelings may build up until the pressure cooker explodes and you might say things you'd regret or even run away from the whole situation. Diabetes is for life. IMO you all need to find a more acceptable way of living.

Long ago I worked on a unit for terminally ill children. Their parents were counselled NOT to fall into the "poor thing, s/he has to put up with so much, we mustn't be hard on him/her." That would just create an ultra spoilt brat and ensure that the family would actually feel great relief when s/he finally did die! A person can be suffering a lot AND be thoroughly spoilt and selfish.

Yep which is what happened yesterday so glad I found this forum I do apologise if I don't reply to you all individually all advice is really REALLY appreciated ... I find his DN a little useless at times and then others she seems bang on her game and like a bull dog chewing a wasp and bang on... I will definitely be looking for the books recommended and also ask his DN if there's any support for myself and also if Simon can attend these courses too.... our hospital trust is East Lancashire Healthcare Trust