coping will it get better?

[Natt]

Hi everyone
I am new to this forum as our diabetes story is just 8 weeks old. My 10 year old son was diagnosed quickly after couple of days that I was noticing he was drinking a lot more and going to the bathroom 6 times per night.
After the initial shock, he took it as a fact and from day one showed discipline and acceptance. But he is changed.No more carefree laughs he's become more serious.The other day he wrote a school essay about the important event in his life.He wrote about how he got diabetes.What strucked me is how he just explained everything in so factual way without dwelling in how he perceived it emotionally.It was even worse for me...
I on the other hand am completely heartbroken but I hide it to myself.Been reading like crazy, I think there is no unopened page on internet that has to do with T1D. Im just so sad and devastated that this has happened to him that I can't seem to find hope in anything.All the talk about how hard T1D is to manage and all about complications is killing me inside. I guess I just need some comfort and support from people who understand.
will it get better, how to truly accept this and try to eliminate the fear and dread of the future? It would mean a lot if you have anything positive to say or at least some advice how to move forward and not let this take all the life's joy.
thank you
Natasha

 

[Deleted Account]

@Natt, sorry to hear about your son's diagnosis and how tough it seems at the moment.
For obvious reasons there is a lot of information on the internet about the complications that can come from having diabetes.
I find it easier to cope when I look at what you can do with your life regardless of having diabetes. There's Team Novo Nordisk: a Pro cycling team made up entirely of people with diabetes. There's Sir Steven Redgrave with all his Olympic medals ... and diabetes. And, you may or may not like the woman, but if Theresa May can be the Prime Minister of UK with diabetes, it makes you wonder if there are any limits. Roddy Riddle is truly inspirational with his activities like Marathon De Sable. If you son is looking for something/someone nearer his cultural interest, there's Este Haim from the band Haim.
From personal experience, I can say that diabetes means you have to plan a bit more than without but, if you keep your BG under control most of the time (don't beat yourself up when his control slips occasionally) you can do amazing things. I have learnt to sail, sky-dive, have a very busy career, I travel around the world visiting countries like Ghana, Uganda and Venezuela.
Diabetes definitely does not "take all the life's joy". It has not taken any of my joy for life.

 

[Dairygrade]

Welcome to the forum natt got any questions fire away always someone here to help?

 

[MelissaC]

Hi @Natt

Diabetes is a lot to take on-board when first diagnosed so I can understand why you are feeling the way you do. There are lots of stories/articles online about the complications, but please don't go worrying yourself about these too much - easier said than done I know. As long as your son checks his blood sugar levels regularly and takes his insulin that's the main thing. At first that can seem like a real pain in your day-to-day life, but after a while it just becomes routine.

There are times where coping with diabetes can feel really difficult, but in all honesty it has not stopped me doing anything in the past ten years that I've had it! It's fantastic that your son has accepted his diagnosis so well so I'm sure he will do just fine. As for the bit where you say he has no more care free laughs - I'm sure he is just shocked, like you were, and once he's settled into his routine a bit more will resume to his normal self

If you have any questions please let us know, this forum is brilliant and everyone is so helpful.

Melissa x

 

[Natt]

Thank you for such quick response. I am aware of what you said and keep telling myself that but on a day to day basis I find it hard to sometimes even look at him.But who am I to have such thoughts when he is handling it so amazingly and tries to go on as usual, with addition of bg testing, therapy and carb counting. I have also tried to get him back to his daily routine as soon as possible, he is back to his water pollo practice, he even went to a 7 day school trip (my mom was there as a back up), and all went fine.I am just so sad and worried and think 20 years in advance with a lot of what ifs. I just have hard time accepting that's all...thank you so much

 

[Juicyj]

Hello @Natt and welcome to the forum

Diagnosis can bring shock, so please don't be surprised at how different your feelings are vs your sons. I know there's alot of information on the web which can be likened to opening a can of worms, but we do have members here who have had diabetes 50+ years and live complication free, it is possible to have a 'normal' life with this. Your son's response is wonderful and he sounds very grounded, as long as he can stay focused then there's not reason why his life should be any different aside from testing and injecting each day, it really shouldn't rule his life. Lots of type 1's out there living the dream and making the most of their lives so really your son's shouldn't be any different.

My personal advice is just take each day as it comes, none of us know what the future holds but living each day and enjoying it as much as possible will help normality to return to your lives. We are all here to help too

 

[justadad]

Hi @Natt and welcome to this forum.
My son, now 11, was diagnosed in January. I joined this forum shortly after, and all members here have been very helpful and supportive in many ways.
We all experience similar fears and face similar challenges. As long as we share them we can help each other.
Looks like your son is coping well, maybe better than you, if I may say so. But that's because no matter how similar our struggles are, we cope with them in different ways. I too thought my son was coping well, in fact even better than the rest of us in the family, until one day he decided he had had enough of self-control and discipline. Luckily, it was just an episode and he was back on track in no time.
I am no expert, but the complications fears,... well, diabetic or not, we all may develop complications for one reason or another. As long as you both keep a decent diet, cut on the carbs, involve a bit of exercise, and I know how demanding water-polo is, then the risk of complications is reduced to minimum. Now, water-polo, isn't that an awesome sport? That is him punching diabetes in the nose, right there!
Best of luck! Happy to share my experience anytime.

 

[Natt]

Thank you all so muc, you are so wonderful, kindness and empathy always bring tears to my eyes (its easy these days).
Thank you so much.How strange it is to suddenly find yourself feeling more comfort and understanding from people you've never met than even from your friends and family?
#justadad kids are so resilient, thank god for that.How is your son doing these days?

yes water pollo is quite exhausting.His trainer was very supportive of the whole situation and keeps an eye of him, for which I am so grateful.

I will try my best to be as brave as he is...I don't want him to see me sad it would make him sad too...

 

[fletchweb]

Hi everyone
.... I guess I just need some comfort and support from people who understand.
will it get better, how to truly accept this and try to eliminate the fear and dread of the future? It would mean a lot if you have anything positive to say or at least some advice how to move forward and not let this take all the life's joy.
thank you
Natasha

Keep in mind that many people with Type 1 diabetes are complication free, and lead relatively normal lives. Some are professional athletes, musicians etc and do all the things that everyone else does. Your 10 year old son may have a wonderful future ahead of him. I was diagnosed at 4 and I'm 55 now - I've had a great life (and still enjoying it), had kids and watched them grow up and my spouse and I are now enjoying an empty house without the kids (it's nice). My Type 1 is not a big deal.

My only advice is try to keep you son active - physical activity is so important particularly at that age. Fortunately my parents enrolled me in to a variety of sports programs when I was young and I think being so physically active thru the years has helped. Also keep in mind that many of the posts on this forum come from people who are experiencing issues with their diabetes - so the number of issue related posts may be misleading from the perspective of the overall general population of Type 1s and how they are making out in life.

Things could very well turn out great for your son - many of us Type 1s are and have been thriving - even before all the diabetes management tools were available.

All the best!

 

[Natt]

Thanks @fletchweb.. Especially for what you said about issues that are shared here and on internet in general. As I am in obsession phase, trying to learn and get to know the beast inside out, I come across many horror stories that actually contributed to me being freaked out by it all. And it's not useful at all.

I am so glad to hear all those positive stories that you have shared. What I need know is more of that positivity, so I can hold on to something...
Btw, I've been looking like crazy for all the latest research and found many interesting things (e.g. what Viacyte is doing, then. prof. Melton at Harward, DRI Biohub, etc, the question is WILL and WHEN those will work.

Any thoughts about that?
Thank you, I wish you all the best
Natasa

 

[justadad]

#justadad kids are so resilient, thank god for that.How is your son doing these days?

yes water pollo is quite exhausting.His trainer was very supportive of the whole situation and keeps an eye of him, for which I am so grateful.

@Natt Thanks for asking! My son is doing great, school is fun, he is often involved in dance or theater shows that the school organises, he attends an afternoon IT course twice a week, and just the other day he told me wanted to go back to play football, which he stopped because the coach had yelled at him on a couple of occasions .
He is very disciplined, most of the time, with the occasional cheat, and that happens when he is at his grandparents' who think that food is solution to everything and anything. Currently on fixed doses of 4 x 1 unit of insulin. BS rarely above 10 mmol and rarely near hypo. I think the libre has played a huge role in better understanding and controlling his diabetes. I strongly suggest you consider it, if you haven't already.

Cheers

 

[Natt]

That is really great, he is a super kid!, accepting it well and moving on with his life. This must mean so much for you as a parent to see that he's OK, they give US strength, so we should definitely embrace that. Of course good bg has a lot to do with this, we are in the similar situation, as both of them are currently in remission (good bgs, still no hypos), hope it lasts..
Yes we have a libre and we are very happy with it. Unfortunately, because of his water pollos practice, we had to take it off..He says he would like to continue practice but also likes having libre...So we don't know what to do yet..should we consider another sport? (His "natural" environment is water, not land)
Cheers
n

 

[fletchweb]

..
Btw, I've been looking like crazy for all the latest research and found many interesting things (e.g. what Viacyte is doing, then. prof. Melton at Harward, DRI Biohub, etc, the question is WILL and WHEN those will work.

Any thoughts about that?
Thank you, I wish you all the best
Natasa

I just read up on Viacyte after reading your response. That sounds very encouraging and the fact that they will be doing human trials soon suggests that they are fairly advanced in the medical technology that they have been focusing on. Cross our fingers ....

 

[Tony337]

Hi Natt
Welcome to the forum.
I was 6 when diagnosed and am now 49!
I can't remember what I felt all them years ago other than feeling left out when the cakes and chocolate were on the horizon!
I can now eat cakes and chocolate but don't want them and can see the irony.
Its probably just a phase as your son is only 8 weeks in and he is just a child.

Wishing you the very best

Tony

 

[Natt]

@Tony337 Thanks Tony. This comforts me in so many ways you cannot imagine. I was telling my mom, also worried sick, what people have told me and she told me today much it meant to her as well and encouraged me be active in the community.

all the best
n

 

[Scott-C]

Yes we have a libre and we are very happy with it. Unfortunately, because of his water pollos practice, we had to take it off..He says he would like to continue practice but also likes having libre...So we don't know what to do yet..should we consider another sport? (

I think you made a small but important step in asking that question, @Natt . Here's why I think that.

In your early posts, forgive me for saying so, it seemed to me there was a definite sense of "doom" coming across. That's understandable: we all feel that after dx. T1 seems like a faceless, unknowable monster to begin with.

Yet, a few posts down the line, you're already asking, hmm, water-polo, libre, how will those work together, another sport maybe?

You might not see it at the moment, because, it seems to me, you're still feeling haunted by the whole thing (again, understandably so), but the fact that you're even asking about how to make T1, water-polo and libre work together shows that you're already looking for practical solutions to the day to day realities of it.

That's what T1 boils down to: figuring out how to play water-polo and wear a libre at the same time, whether to eat oatcakes or dried dates and/or both when hillwalking/cycling, how much to bolus for a scarily high-carb Chinese buffet. Practical day to day things.

It's not a monster when you look at it from that point of view. Wouldn't quite go as far as saying it's a big huggy cat, but it makes it a whole lot more manageable.

You've already started seeing it that way by asking about how do you water-polo and libre: it's just a thing and there's a way of sorting it. Think about the other aspects of it in the same way.

Sure, at the end of the day, yes, it is scary, there are uncertainties, hypos are never much fun, and there are no guarantees about complications.

Yet, the practical reality of it is that we all just learn little tweaks, nudges, tips, tricks, and the whole thing, eventually (granted, it does take a while) ends up not as an horrific monster, but, something we all just use a bit of ingenuity to live with, so that T1 kinda just becomes like a small child who needs looked after even though it can be unruly at times.

You mentioned looking twenty years into the future and worrying about what will happen. Chances are, in ten to fifteen years time, he'll be jumping on a plane to go backpacking in Asia for a year, he'll have the time of his life, send you lots of postcards and wonder why mum was so worried about it all. He'll have figured out everything he needs to set up to do a trip like that as a T1. Or, indeed, anything else he chooses to do over the next twenty years.

PS: I'm not a swimmer, but there's a few people who stick waterproof Tegaderm, Roctape, on the libre don't know how those would work in a water-polo situation.

 

[Natt]

@Scott-C Thanks for this insight! Yes, you are completely right, almost like you're in my head) Its all mixed up in me right now the fears and the dread (especially in the evening, and it strikes me also during the day when I am nor around him) but at the same time I work on how to make things as easier as possible for him, figuring out practical things as you said.. I cannot shake the feeling of sadness, though, which is so deep inside no matter how I appear on the outside or how "proactive" I might seem. I can just hope that it will somehow settle in, at least to a degreee that I stop feeling sorry for him (that is the worst feeling I have ever experienced!) and instead look at him as I used to before all of this has happened...

And thanks a lot for tegaderm advice, I shall look into it ASAP.
I wish you all the best
N

 

[Scott-C]

@Natt , it's almost 30 years since I was dx'd as a 21 yr old, but, astonishingly, my mum, who is now almost 80 (and still tearing around in her Mini like an F1 driver!) still slips in a few references about how she feels she's let me down in some way by me becoming T1. She worries that, oh, maybe it's a genetic thing, she's passed it on, maybe she fed me the wrong food, etc. etc.

It's understandable in the sense that parents always want the best for their kids and will usually self-criticise when something goes wrong, even when the reality of it is that these things happen.

The reason I mention this is that when you use words like "sadness", there's maybe an element of you thinking you've let him down, that he's become T1 under your watch, and you're to blame in some way.

If that's the case (and I'm obviously just speculating here, but I get a sense it might be a part of it) then, seriously, don't do that. T1 is a random condition which can happen to anyone.

First, blaming yourself will do nothing for your state of mind - you have done nothing wrong, your boy's T1 will have happened anyway - , and, second, if your lad gets a sense that you're blaming yourself, he's not going to feel that great about himself, because sons always want their mums to be safe: that whole mum/son thing works both ways. So, it's not helping him, if you start blaming yourself, because he'll start blaming himself for something which is neither of your faults.

Anyway, you've also written about "dread" and "fear". This is understandable at this stage. But give it a while and then try to unstitch what it is you're dreading and fearing. It's like most new things in life, scary to start with, but then when you look at it properly, not as bad as you first thought.

Complications are an obvious dread. There are no guarantees about those. But all the evidence shows that the risk is substantially reduced if T1s pay a bit of attention to keeping within range most of the time. Complications don't just pop up overnight in response to one off events: I'm not going to suddenly go blind or lose a limb if I miscalc the bolus for the white rice with that Thai green curry. Complications are more likely if I do that day after day for a long time, months, years.

I think you should forget about complications for the moment. It's a longer term issue which you shouldn't bother yourself with just now while you're learning basics like how much 10g rises and how much 1u drops. Those are they key things (and basal!), and if the wee man and you get those right (libre makes that so easy, it's almost like cheating!), it means he's way more likely to be in range, and, hence, much, much, much, higher chance of that hooded ghoul you call complications just saying, hmm, tough work here, I'll go haunt someone else. The complication ghoul is a total coward when a 10 year old tells it to go **** itself.

This, though, all depends on the attitude your boy takes to it. As teens approach, it can go one of two ways. Some teens just think, what the hell, do what I want, run at 25. If he does that, complications become an issue. If he says, I'm ok with this, I know I can do this that and the next thing provided I bolus for it, it's less of an issue. Where kiddo ends up on that spectrum is down to you and him.

Sticking with the dread and doom theme, read Breakthrough...by Thea Cooper. Well researched book about how Banting and Best discovered insulin in 1922. Before then, there was dread and doom: T1s died, always. And then they didn't. If that isn't a reason for optimism, I don't know what is. Some beautiful stuff in the book about Banting and Dog 92, Marjorie. Read that book and appreciate just how much we all owe to Marj.

 

[Janet_rabbit]

Hi Natt,
You sound just like my lovely mum did 40 years ago when I was diagnosed and she had to inject an orange to practise giving me injections and apparently I just said "Don't worry Mum - you'll get used to it!" I think it is often harder for loved ones such as parents to look on than it is for the person with diabetes themselves. I know she worried when I went tearing off on my bike, went swimming in the sea, went away on school trips and when I went off to university, but she gave me so much support and help and I managed fine. I know my husband now often finds some bits of my erratic blood sugars harder to handle than I do too. I guess for me, and for your son, it is just another part of our life and we just get used to it being there all the time - even though we can get fed up with it quite often too! Let your son be as active as possible and enjoy life to the full. (PS I am lucky and still have no complications). One of the best things my mum did for me was let me go on an activity holiday for kids with type 1 - I made lots of friends and did loads of fun activities and it made everything feel possible.

 

[Cherry_Dhel_Henggosa]

Its pretty usual for parents to react on that kind of situation. I know its really hard since we always treat our young one's like a precious jewel. I really understand how you feel right now. You have someone to lean on in times like this, (Pat on the back)

However, you don't need to worry to much as it might just worsen your situation. It will just adds up to the depression you and your son would undergo as of the moment. Try to be more positive and cheer up your son. He needs you and you must be strong enough to cope up and handle his illness. Try not to jump over to the negative side of it. Instead, do the things that you ought to do. Let your son's blood sugar kevels to be check regularly and take his insulin as part of his medication. Your son can still live a normal life, just keep an eye on him specially on his illness and try to search for more ways to combat his illness. He must have a strict diet and you need to support him with this. Live a healthy lifestyle, let him have his regular check up, let him take his insulin, stay positive and do not worry too much. I know your son will have a long way ahead with you free from complications of diabetes. Just have faith.