Diabetes is a lonely beast

[h4kr]

Maybe I’m jet lagged, maybe hung over, maybe home sick. Maybe all the above.
I really feel that this is a lonely journey.. the wife doesn’t want to talk ‘numbers’, diabetes is all consuming with both me and daughter number 2 being diagnosed t1 in the space of 6 months.
I feel like I’m on self destruct mode.. I don’t cry, im a man. I just can’t stop being super emotional some times. I’m definitely in denial.
I feel so lost and alone.. I know I have to be strong for my daughter. Maybe I need to see a counsellor, I’m not sure how long I can play at being the strong one and pretending that everything is ok.

 

[EllieM]

How old is your daughter? Is she old enough for you to be able to support each other with the numbers, or are you having to do all her numbers for her?

 

[h4kr]

She is 8, I do everything at home.

 

[EllieM]

Ah, that's really hard. I was 8 when I became T1 but I was lucky in that my mother had been T1 for a decade so was able to handle all the diabetic stuff. (And there was less diabetic stuff then, the only testing we could do was a urine test in a test tube.) But though I didn't know it then she told me later (decades later) that she was devastated by my diagnosis at the time.

Definitely get all the help you can from friends, family, GP and your diabetic clinic. Your wife needs to get on board. even if only to recognise hypos. And you'd be amazed at how quickly and well an 8 year old can learn to count carbs.

And if you want some moral support, these boards are full of people who can empathise with how you're feeling.... It's bad enough being newly diagnosed, but coping with a child's diagnosis is probably worse. (Though actually 8 isn't such a bad age to get childhood T1: old enough to tell you when she's hypo and start to learn how to manage her illness, but young enough to avoid teenage tantrums and lack of cooperation).

Good luck.

 

[h4kr]

Maybe I just needed to vent, been away from home for 2 weeks in Asia...

 

[phdiabetic]

Maybe I’m jet lagged, maybe hung over, maybe home sick. Maybe all the above.
I really feel that this is a lonely journey.. the wife doesn’t want to talk ‘numbers’, diabetes is all consuming with both me and daughter number 2 being diagnosed t1 in the space of 6 months.
I feel like I’m on self destruct mode.. I don’t cry, im a man. I just can’t stop being super emotional some times. I’m definitely in denial.
I feel so lost and alone.. I know I have to be strong for my daughter. Maybe I need to see a counsellor, I’m not sure how long I can play at being the strong one and pretending that everything is ok.

Talk to your wife! She may not like numbers, but if your daughter is a T1 it is essential that she understands diabetes in order to parent her!

I agree with the idea of speaking to a counselor. Maybe consider taking your T1 daughter along with you, especially if she is struggling with her own diabetes.

 

[h4kr]

She manages my daughter fine when I’m not at home.. it’s just me, feel like I’m doing this alone.

 

[debrasue]

Maybe I’m jet lagged, maybe hung over, maybe home sick. Maybe all the above.
I really feel that this is a lonely journey.. the wife doesn’t want to talk ‘numbers’, diabetes is all consuming with both me and daughter number 2 being diagnosed t1 in the space of 6 months.
I feel like I’m on self destruct mode.. I don’t cry, im a man. I just can’t stop being super emotional some times. I’m definitely in denial.
I feel so lost and alone.. I know I have to be strong for my daughter. Maybe I need to see a counsellor, I’m not sure how long I can play at being the strong one and pretending that everything is ok.

Yes, this can be a lonely journey, but you are not alone. And you don’t have to be strong and pretend that everything is ok - sometimes it just isn’t, and that can be true at any stage of this journey.

It seems that your job puts you in a lonely place sometimes and it must be hard for you to have to spend time away from your daughter. I agree with others who say that your wife needs to get on board with this, and I suppose the job of making her realise that is going to have to fall to you, but you can use the resources on here to help you do that - please don’t feel you have to do it alone.

Don’t feel lost, either - you have found an incredibly valuable ally in DCUK. Counselling may be the way forward for you - having someone really hear you is very empowering - but this website can be your lifeline, too. It’s a safe place to come and talk whenever you need to, and although it’s a UK site it has an international membership, so you’ll always be able to find someone to talk to, at any time of your day or night. And, more importantly, it’s stuffed to the brim with people who have been and are going through the very same things that you are experiencing - all across the world.

Open up, share your experiences, hopes and fears, cry if you need to, spare a few words to help someone else along their same journey - you’ll soon start to feel part of a big, caring community and not alone after all.

Sending you big hugs and encouragement x

 

[Fairygodmother]

Hi @h4kr, I imagine the last six months have been a tough time for your wife, too. Do you think she felt a bit left out? You and your younger daughter will have something that binds you together while she’s left on the supportive sidelines. And T1 demands a lot of work in the early stages; it’s a hard condition to get the measure of. Couple that to the fact that you’ve been away and it seems to me that you and your wife may now need some time to sit down together and take the time to get close again, to talk about how the last six months have felt for each of you. Life will have been going on without you while you were away and so there are even more reasons for you to have that time to talk. In my experience a man loses none of his masculinity, none of his ability to support his family, when he reveals his emotional self. You may both benefit and come closer again if you show her, as much as you can, what T1 feels like to the person who has it and she shows you what it’s like for the one whose life is also changed by it.

It’s good news that your wife managed your daughter’s diabetes while you were away.

I think we can all have these times of feeling alone with it, that’s why this forum is so great! You’re right, it can be a lonely journey, and you’re right, it doesn’t help if we’re tired and jet lagged. Does it feel a little less lonely now you’ve shared?

Congratulations, by the way, on managing a trip to Asia so soon after diagnosis! You’re doing really well!

 

[Juicyj]

Hello @h4kr I recognise exactly what your feeling right now and for me after diagnosis it hit at around 6 months in. I think it was the accumulation of many emotions and the stark realisation of what I was facing, also at that point I felt incredibly lonely as I knew no other type 1’s, I worked full time and was mum to a young child so was over whelmed. I ended up seeing the gp and getting anti depressants which wasn’t what I wanted but as there was no counselling available it was the only option I had available to cope, I also took up meditation and came off the pills after a month. I think I simply wanted some one to tell me it was temporary, I just had to stop anticipating future events and get on with focussing on the day to day.

What i’m trying to say but probably waffling my way through it is that you will be fine this is a temporary feeling, you do need to talk this through with your wife, with the greatest respect you may well have been so busy that you really haven’t had much time to acknowledge it so it’s at the point you feel tired/awake and over thinking, things are always so much better after a good nights sleep so hope when you wake feeling a small weight has been lifted.

You already are doing an amazing job so appreciate how far you’ve come already.

 

[NoKindOfSusie]

I'm almost exactly six months in too. I can't say anything worthwhile without everyone getting upset so I'll just say I know how you feel and there are other people in a similar situation. No children here but I can at least try to imagine how that would feel.

It is not nice.

 

[Boo1979]

Talk to your wife! She may not like numbers, but if your daughter is a T1 it is essential that she understands diabetes in order to parent her!

I agree with the idea of speaking to a counselor. Maybe consider taking your T1 daughter along with you, especially if she is struggling with her own diabetes.

In terms of seeing a counsellor / therapist you might want to look into family therapy - any long term health condition gets into the whole family system, particularly the most immediate family unit, and will both affect and be affected by the relationships between family members - the bit below is copied from the site of the American Assosciation for family & marital Therapy.
Family therapy also has an established evidence base as a useful approach to adolescent non compliance with diabetes treatment.
In the Uk, AFT and IFT ( The assosciation and institute of family therapy respectively) are useful strating points

Quote from AAFMT site:-
How Does Diabetes Affect Relationships?
Diabetes is often called a “family disease” because it affects more people than just the person who is diagnosed. As the patient is required to change old routines (and adopt new ones) across a wide variety of areas in his or her life, significant adjustments by all of those close to the patient are also necessary in order to ensure good disease management and physical health.

For example, managing diabetes requires careful attention to diet, including what foods to eat (and in what portions) and what foods to avoid. This usually means that the whole family must change their diet along with the patient, because not very many people are willing (or can afford) to cook two different menus everyday..........

Adjusting to and managing diabetes in these ways can be very hard for couples and families. For example, some family members may feel resentful about having to change their own everyday diets (or lose their ability to spontaneously eat tasty foods), when they are not the one with the disease. Others may struggle with a sense of encroachment on their free time, because the person with diabetes wants them to go for walks or engage in other types of exercise. Children without diabetes can sometimes feel jealous of how their diabetic sibling gets more parental attention. Patients with diabetes (both children and adults) may feel that others’ attempts to be supportive are actually “nagging” them.

However, when families come together and fight diabetes as a team, everybody wins. Research has shown that patients have better health when their families are supportive and share in the disease management. And many describe diabetes as actually having helped them to become even closer. Talking about foods, cooking together, exercising together, going to doctor visits together, and so forth, all help families grow stronger. Furthermore, research has shown that non-diabetic family members who do this improve their own health—like losing weight and reducing blood pressure.

 

[Scott-C]

This is fairly common @h4kr . Many people when newly dx'd decide to tackle it head on, read all the books, reckon they've got it covered....and then they realise it doesn't always play by the rules, and the reality of it sinks in.

There's no easy answer to this. It's all a lengthy process of accomodation, learning to live with it.

I suppose it's easy and trite for me to say this, having done it for 30 years now, but I went through what you're going through, and it does pass.

I don't get too hung up about numbers. Posts by T2s about them being worried by a 0.6 difference in morning readings are amusing. As long as I'm generally kicking around somewhere between 4 to 7, I'm ok with that. I don't sweat the details.

I kinda carb count, but after a while it's more or less look at a meal and just know that'll need 8u or whatever, and if I'm out, it's nothing a few biscuits won't sort.

In many ways, it was easier in my day. Stay broadly between 4 to 7, have some sweets when hypo, try not to go over 9 too much.

Nowadays, there tends to be too much worrying about finer details. It puts too much pressure on newbies. People actually weigh tomatoes?

I recall from earlier posts that you're both using libre. Might have mentioned it before but I've got a small £96 blucon transmitter from www.ambrosiasys.com on top of mine, bluetoothing a reading to an android app xDrip+. Means I'll get woken up if I'm going to low in the night, and gives predictions so I'll get a long heads up on developing highs and lows and can then decide on small corrective nudges. Libre is good on it's own, but this takes it to a whole different level. It gives me a lot of peace of mind.

It is possible to get to a place where T1 is something you co-operate with, rather than fight. It takes time, but hang in there.

 

[abcd99]

Maybe I’m jet lagged, maybe hung over, maybe home sick. Maybe all the above.
I really feel that this is a lonely journey.. the wife doesn’t want to talk ‘numbers’, diabetes is all consuming with both me and daughter number 2 being diagnosed t1 in the space of 6 months.
I feel like I’m on self destruct mode.. I don’t cry, im a man. I just can’t stop being super emotional some times. I’m definitely in denial.
I feel so lost and alone.. I know I have to be strong for my daughter. Maybe I need to see a counsellor, I’m not sure how long I can play at being the strong one and pretending that everything is ok.

I know how exactly you feel.........but at such times you don't have to look at people who are better than you, but people who have more serious problems than you. Look at all the miseries around you and you will start feeling little lucky. When my young son all of sudden was diagnosed with type I I wanted to jump out of the window.I cried and still crying, but trying to be strong looking at more unlucky people around. Have faith in God.....God will give you strength and ways to deal with this and with time you will learn to live with this..you are alive, you can eat and drink..........you are still better than others........God bless you.

 

[h4kr]

Thank you all for the responses, this forum is amazing and I appreciate the time taken by all. I feel like I can talk here. Got a 13 hour flight and will be home. Maybe time to let the monster out of the bag and let the wife know I’m not actually coping.
Again, thank you for just listening.

 

[Jaylee]

Hi @h4kr ,

All this traveling can be tiring as well as exhilarating..

If I was to suggest one thing? Give the "monster in the bag" a little time to "acclimatise" when you get home...
Give it some clear constructive thought regarding a positive way forward.

All the best!

 

[ickihun]

Thank you all for the responses, this forum is amazing and I appreciate the time taken by all. I feel like I can talk here. Got a 13 hour flight and will be home. Maybe time to let the monster out of the bag and let the wife know I’m not actually coping.
Again, thank you for just listening.

Your honesty should bring you both closer.
Honesty is the best policy.
Expect to hear her side too. She may be struggling too but in different ways.
She will be thinking... at least you get a break from daughters needs. Reminder her you have your own health responsibility 24/7 until you can understand it more. More confusing if chasing 2 people's sets of results? Best if she can be daughters main carer in this til more experience available? Just til things settle down?

 

[Robinredbreast]

It can be hard at times, type 1 doesn't play ball and it can be frustrating, lonely and you just want to give up.............. but, life is for living, so try and take control of diabetes and don't ever let it take over or burden you, take it by the horns and fight on. Take care, you're doing okay

ps there is a scream thread that is great for having a moan, a whinge or a little rant.

 

[ickihun]

Make it clear to your wife you need her ears and understanding more than physically check your bloods, only if unconscious. Don't pressure her into having to know everything none of us do.
Learn together and share any new knowledge.
Get breathing space from it all, when possible.
Reminder her it won't be so intense forever.