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Hello new to this

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
1

160979

New Member
Relationship to Diabetes
Type 1
Hi

I am a mother whose 3 year old has been newly diagnosed with Type 1. Still coming to terms with it all but still scared and worried we will never be happy again and life will always be hard. Just wondering if everyone feels like that and if we will indeed be happy again.

Thanks
 
Hello
Welcome ,
You certainly are having to cope with a very difficult situation. it is good that you have joined the forum and I am sure there will be others here that have faced similar situations. There are some parents and carers on the forum, and a great deal of experience and knowledge of Type 1.
It is natural to feel scared and worried, but as time goes on and the treatment and situation gets under control, I'm sure that things will get better, and you will have happy family times again.
 
Toucan said:
Hello
Welcome ,
You certainly are having to cope with a very difficult situation. it is good that you have joined the forum and I am sure there will be others here that have faced similar situations. There are some parents and carers on the forum, and a great deal of experience and knowledge of Type 1.
It is natural to feel scared and worried, but as time goes on and the treatment and situation gets under control, I'm sure that things will get better, and you will have happy family times again.
Click to expand...
 
Thank you for your reply I really appreciate it. I know deep down it will get easier even after a week I know more than I realised I could learn.

Thanks again x
 
Good Lord - if having to cope with T1 meant you could never be happy again - there are shedloads of us around who've had it for 50-odd years and still enjoying life - so explain that?

Yes there is grieving - so let yourself grieve for goodness sake - else YOU won't survive. I only knew I must be getting my head round it a few years at least post diagnosis, since when one day collapsing in buckets of tears for no reason whatever apparently - I suddenly realised I hadn't done that for some time! So that instantly stopped the flow and the sobbing.

Later, little one will need to go through the same process and unfortunately the time when this happens often clashes with puberty and teenagers can be pretty orrible anyway without diabetes so brace yourself, Effie! is my advice.

Treat yourself to a very good book written especially for you by Ragnar Hannas & others - Type 1 diabetes in children teens and young adults. All the info, written in readable plain English - NOT 'medical-ese'
 
Welcome - probably not a good idea to share the never happy again vibe with your child, try to make light of it, phone the helpline here, Many people here are living with Type 1 very admirably I think. Easy for me to say perhaps as I am only Type 2 not using insulin, I'm just thinking if your child picks up on the "nevery happy again" it could be very bad for the mental, emotional and physical health.
 
I just want to make it clear I have never shown to my child that I am unhappy and I am being positive for him. I just wanted to know if life gets easier
 
trophywench said:
Good Lord - if having to cope with T1 meant you could never be happy again - there are shedloads of us around who've had it for 50-odd years and still enjoying life - so explain that?

Yes there is grieving - so let yourself grieve for goodness sake - else YOU won't survive. I only knew I must be getting my head round it a few years at least post diagnosis, since when one day collapsing in buckets of tears for no reason whatever apparently - I suddenly realised I hadn't done that for some time! So that instantly stopped the flow and the sobbing.

Later, little one will need to go through the same process and unfortunately the time when this happens often clashes with puberty and teenagers can be pretty orrible anyway without diabetes so brace yourself, Effie! is my advice.

Treat yourself to a very good book written especially for you by Ragnar Hannas & others - Type 1 diabetes in children teens and young adults. All the info, written in readable plain English - NOT 'medical-ese'
Click to expand...
 
Thank you for the response. I am holding it together for my son and being the most positive mum I can be. I cry in secret as I assume everyone does. I know it will get easier. Thanks for the advice on the book x
 
Hello @160979

Welcome to the forum.

I’m so sorry to hear about your little man’s diagnosis and can only imagine how devastating it must be for you (I was diagnosed in my 20s). As Jenny says, some people liken dealing with a diagnosis like diabetes as being very like grieving, so allow yourself to feel your feelings and never shy away from sharing them here, even if you are maintaining a perky appearance for your son and family. We understand and are here for you.

Checking the Parent’s board was a good tip - if anything, browsing a few threads will show you that you are not alone, that everyone struggles, but that ultimately diabetes is something that can be made to fit into a normal, happy childhood - with just a few adaptations and a little bit of forward planning.

I don’t know whether it will appeal to you, but I found this short animation ‘diabetes makes you stronger’ a positive and encouraging spin on living with T1 diabetes.


I’m also going to tag-in @Bronco Billy @Sally71 and @Thebearcametoo who are experienced and friendly parents of T1 youngsters who will have more hands-on experience of being in your shoes right now.

Keep posting, and remember no post or question will be considered silly or too obvious here.
 
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Thank you so much for the lovely reply. His bloods were low again in the night which is stressful but his levels during the day are good so the night time needs tweaking again, just hope it sorts itself out.

The animation was fantastic thank you again x
 
Hello again,
Many thanks for letting us know how it's going. A new day, and hopeful you can gradually start getting used to things. I know it's hard to do, but try to find some time to relax and rest yourself, so that you have the strength and reserves to help your little boy,
I've heard it called 'air hostess syndrome', - Always put your own mask on first, or you won't be able to help others.
Very Best wishes
 
Toucan said:
I've heard it called 'air hostess syndrome', - Always put your own mask on first, or you won't be able to help others.
Click to expand...

that’s a great way of thinking about it.

but it’s important for your son to hear that you are sad for him too. That you don’t underestimate how hard it is for him, and know that he will feel sad too. Not that he is causing you sadness, but that you are sad about what has happened and want to get through it together.
 
Yes it does get easier! My daughter was 6 at diagnosis, and within 7 weeks went from perfectly normal child enjoying her birthday to very sick indeed and going into DKA. Of course it is one hell of a shock, overnight life as you know it has changed and can never change back, you have a whole load of new stuff to learn and can't see it ever getting easier, but it does! Yes you do need to grieve, and that can take time. For me it was 6 months before I could cry at all, and then another 6 months before I really let it out properly, and then I was a complete basket case for at least a couple of weeks! But after that I felt much stronger and finally felt like I knew what I was doing most of the time without having to check every little thing with the nurses. If you have a good hospital team it helps, we were able to phone or email ours whenever we had a question, at least for the first few weeks until we started to get the hang of it. Once you've done things for a few weeks it starts to become more normal and less scary. Try and share it with your child too, as much as they are capable of understanding, explain in simple terms why you are doing things and make it as normal as possible and not a big fuss about everything. But at the same time let them know that it's ok to feel sad about it sometimes too. I've often said to my daughter that I wish I could take it all away or have it instead of her, unfortunately that isn't possible so let's just get done what we have to get done and then go and enjoy something together. She is 13 now and starting to take more responsibility for things herself which makes it a bit easier on me, she still likes me to do quite a lot for her though and I always try to include her in discussions if I’m not sure about something. Or at least tell her what I’m up to if I’m changing something on her pump!
 
Sally71 said:
Yes it does get easier! My daughter was 6 at diagnosis, and within 7 weeks went from perfectly normal child enjoying her birthday to very sick indeed and going into DKA. Of course it is one hell of a shock, overnight life as you know it has changed and can never change back, you have a whole load of new stuff to learn and can't see it ever getting easier, but it does! Yes you do need to grieve, and that can take time. For me it was 6 months before I could cry at all, and then another 6 months before I really let it out properly, and then I was a complete basket case for at least a couple of weeks! But after that I felt much stronger and finally felt like I knew what I was doing most of the time without having to check every little thing with the nurses. If you have a good hospital team it helps, we were able to phone or email ours whenever we had a question, at least for the first few weeks until we started to get the hang of it. Once you've done things for a few weeks it starts to become more normal and less scary. Try and share it with your child too, as much as they are capable of understanding, explain in simple terms why you are doing things and make it as normal as possible and not a big fuss about everything. But at the same time let them know that it's ok to feel sad about it sometimes too. I've often said to my daughter that I wish I could take it all away or have it instead of her, unfortunately that isn't possible so let's just get done what we have to get done and then go and enjoy something together. She is 13 now and starting to take more responsibility for things herself which makes it a bit easier on me, she still likes me to do quite a lot for her though and I always try to include her in discussions if I’m not sure about something. Or at least tell her what I’m up to if I’m changing something on her pump!
Click to expand...
 
Thank you for the reply. It’s great that things will get easier and I know they will I am still fighting with my thoughts at the moment and the what iffs and also jealousy towards “normal” people which I hate feeling. My son didn’t go into DKA luckily as we caught it very early. He went from a normal boy over Xmas to a over hungry, very thirsty and peeing a lot boy so quickly I knew something was wrong but the last thing I expected was Diabetes. My husband is going back to work as he has to next week and I am worried but I know I will cope as I have to. We have managed to brave it and go out which was hard but once we were out I did start to relax especially with the pharmacy I now carry in my bag. I know I need to look after myself as much as him but the last thing you think of is yourself. The worry are the hypos at night we have struggled with them despite reducing the Levemir at night so the 2.00am wake ups do take their toll. The nurse told us not to check if they stay above range for two consecutive night but looking at the comments I should be checking him in the night forever. So I am so confused at that bit as I do t want anything to happen to him for the sake of a quick blood check.

Thanks again xx
 
I would carry on checking at night if it makes you feel more comfortable. I still check my daughter, usually just once somewhere between midnight and 3 am, and from experience i know that if she's ok then she'll almost certainly stay ok until the morning. She has less hypos at night now but I still like to check anyway; I did comment recently that she's a young lady now and there will probably come a day sometime soon when she will decide that she doesn't want me barging into her room at night any more, but she got quite upset and ordered me not to stop - it makes her feel safer too.

Oh I remember the jealousy - yes I used to look longingly at other children running around stuffing sweets and all manner of other goodies into their mouths without a care in the world, and wish that we could still do that without having to faff about carb counting and injecting! A counsellor once asked me if I had accepted the fact that my daughter has diabetes, and my reply was how can I ever accept the fact that her body can no longer sustain itself without medical intervention, and if you take away all those little bottles in my fridge she'll die? I have always tried to banish thoughts like that from my mind but they come back every now and again. But I think maybe a couple of years ago, I.e. 5 years since diagnosis, it finally dawned on me that diabetes was not the first thing I thought about all the time any more, and the sadness and jealous thoughts were really quite rare now, and it all felt pretty normal and was actually fading into the background a bit and was not this bad thing we were dealing with. So if that's what accepting the situation means then maybe I am almost there. You'll get there too, in time 🙂
 
Thank you again for your kind words. I am going to speak to the nurse about my concerns at night and I will make my own decision regardless of what the advice is I think for now anyway.

Thanks for making me feel “normal” whatever that is.

xx
 
So - did you ever feel resentful towards him when he was a new baby and needed attention at both ends around 2am? That didn't last long either, did it! LOL
 
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