So desperate not to be T1

BekkiG74 · Mar 2, 2015

Feeling very sad this evening. My 9 yr old daughter is really struggling with everything at the moment.
Initially when she was diagnosed ( a week before Xmas ) she seemed to take it all so well and just accepted whatever was thrown at her. However over the last couple of weeks she's become very angry about it and says she hates it because it has changed everything! Tonight she even tried to tell me that she faked all the original symptoms and that she lies about her BG levels. When I explained that that wasn't possible as I'm always with her when she tests , she just dropped to the floor and sobbed saying she knows but she just wants it all to go away and was I sure the doctors hadn't made a mistake.
Oh how I wish they had and oh how I wish I could take it all away for her.

Sorry for the moan , just really feel for her :-(

catherinecherub · Mar 2, 2015

I feel for both of you, it is so hard for children and they are not old enough to understand. every aspect.

((((hugs))))

BekkiG74 · Mar 2, 2015

Awww thanks @catherinecherub it is so hard to watch her get so upset. If I could swap places with her I would in a heartbeat xx

dtennant9 · Mar 2, 2015

I can't imagine what it must feel like to be a parent in this situation and it must be so confusing and difficult for your daughter.

BekkiG74 · Mar 2, 2015

I just feel helpless @dtennant9 I do try and be very matter of fact about it in front her , like its no big deal. But inside I feel so heart broken for her.
I know it's a manageable condition and that there are many other children who deal with far worse conditions but it also upsets me people say things like " it's only diabetes " or " did she get it because you let her eat too many sweets "

So frustrating!

lely · Mar 2, 2015

Oh dear. I have no words of wisdom for you. Such a tough thing for you all as a family to be dealing with.
I'm sure if you dig deep the nhs will have groups, people who you could go see to help you all though this transition. I'm 39 and only diagnosed 7 years ago but it did take me a fair while to get to grips with it. And my spouts of feeling hopeless became fewer and far between.
Im sure you will all find the strength somehow.
Wishing you the best with everything.

noblehead · Mar 2, 2015

Heartbreaking, do try and stay strong for your little one Bekki.

BekkiG74 · Mar 2, 2015

Thank you
It's just the two of us so I am determined to stay strong for her , and with all the great support on here I know that I will

lely · Mar 2, 2015

BekkiG74 said:
I just feel helpless @dtennant9 I do try and be very matter of fact about it in front her , like its no big deal. But inside I feel so heart broken for her.
I know it's a manageable condition and that there are many other children who deal with far worse conditions but it also upsets me people say things like " it's only diabetes " or " did she get it because you let her eat too many sweets "

So frustrating!

Of course you have to be straight with her, I think, it's a mums job to tell all the truth no matter how unpleasant and unwelcome it is.
We here know its not 'only diabetes'
I know it's early days for you so do remember her behaviour can be a result of her BG not being right so take that into account for her. My 3 year old neice has T1 since Nov 2013 and her tantrums in first couple months were hard to see as she was always a calm.little girl. Now over 12 months on she's level as anything.

BekkiG74 · Mar 2, 2015

That's really good to know @lely I'm hoping if I'm always consistent then things will settle soon. We have a psychology appointment with the diabetes team on weds so think I will mention all these things then as they may well be able to give some advice too.

dtennant9 · Mar 2, 2015

As said above it is early days, but I know around near where I am they Diabetic camp for kids which I know is very helpful. Don't know if they have anything like that where you are. There are also support groups.
It must be so difficult for your daughter. I'm always very thankful that I was not diagnosed until I was older.

BekkiG74 · Mar 2, 2015

Ohhh that's interesting , about the camps. I will look into that and see if there's anything in my area too.....think she'd really like that!

RHNtype1 · Mar 2, 2015

Hi, there, So sorry to hear of such hard times.I was diagnosed a little later than your daughter at age 11 but a similar pattern of completely not phased then really angry and upset is a strong memory for me from that time. I also felt that I had to reassure my family and make everyone proud by dealing with it and being strong which was not very healthy, IT IS GREAT THAT YOU AND SHE CAN SPEAK ABOUT HOW UNFAIR IT FEELS. Sounds like you are really paying attention to her feelings while managing to give her the support to do what she has to do. My advice, 34 years on would be to help her to learn as much as she can, support her to try different things and get the information that lets the insulin work for her. I have had a busy life and have a family myself, never thought I would get here when I was a teenager angry with my body for sticking me with diabetes. Good thoughts and good wishes to you both.Rx

Sent from the Diabetes Forum App

BekkiG74 · Mar 2, 2015

Thank you so much for your reply @RNHtype1. It's very reassuring to hear from someone who has been through it and has come out the other side. I guess it will be a turbulent ride for quite a while yet for us , but you've really made me see that there is a light at the end of the tunnel. This forum really is so amazing , I feel a lot more positive now this evening. Thanks to you all

coco44 · Mar 2, 2015

Hi Bekki felt a mixture of sadness, anger and then hope for your little one. Sad that this has had to happen to her as I know how I felt being diagnosed with Type 1 nearly 4 years ago at age 55 and it was confusing enough for me being an adult. I wanted the doctors to be wrong, but of course they weren't. Anger because I had silly remarks like you've had such as "bet you wish you hadn't eaten all that sugar when you were younger" and "don't forget you mustn't eat sweets now" etc. Hope because you love her and will support and help her in every way you can. This forum really is fantastic. Sending you and your little one big hugs, Coco x

ronialive · Mar 3, 2015

Hi Beki, I don't know if I missed it but how old is your daughter? I was 3 when I was diagnosed and probably one of the best things I did was attend a diabetic childrens holiday camp. As an adult I have twice worked on them - they teach kids everything they need to know to feel more in control and also enable them to meet others with the same difficulties. I have a friend even now that I met on camp. I have tried to find a link but believe their website may be down. www.diabetes.org.uk
I am happy to chat to her if it will help. Feel free to pm

jack412 · Mar 3, 2015

BekkiG74 said:
I just feel helpless @dtennant9 I do try and be very matter of fact about it in front her , like its no big deal. But inside I feel so heart broken for her.
I know it's a manageable condition and that there are many other children who deal with far worse conditions but it also upsets me people say things like " it's only diabetes " or " did she get it because you let her eat too many sweets "

So frustrating!

It's good that your daughter can tell you how she feels,
ask on wednesday if this is ok.. I would also tell her at an 8 yr old level, how you feel, have a nurse and a hug and cry how diabetes suck.

Bebo321 · Mar 3, 2015

Do you know there is an 'un-conference' for people with diabetes this weekend? (first ever!) to be held in Nottingham. Open to all with diabetes, friends and family.
I know there are a lot of very sensible folk coming - children coming too, and it's been organised specifically to allow people to meet, chat and discuss their concerns/issues in an open and friendly environment. Organised by the GBDoc www.gbdoc.co.uk and sponsored by TeamBG www.teambloodglucose.com

Robinredbreast · Mar 3, 2015

BekkiG74 said:
Awww thanks @catherinecherub it is so hard to watch her get so upset. If I could swap places with her I would in a heartbeat xx

Oh I am so sorry, if we could take those nasty things that hurt our children away we would do it, as you said, in a heartbeat. Not being the 'same as her friends' any more has affected her badly and she just wants to be 'normal' again. I felt the same when my granddaughter was diagnosed, it's so hard. Give her time and she will find that diabetes doesn't have to be a burden, but will just be a small part of her, she will find the strength to battle through it and come out on top, even stronger.
((((((((( hugs ))))))))) take care and all the best.

RRB x

RHNtype1 · Mar 3, 2015

BekkiG74 said:
Thank you so much for your reply @RNHtype1. It's very reassuring to hear from someone who has been through it and has come out the other side. I guess it will be a turbulent ride for quite a while yet for us , but you've really made me see that there is a light at the end of the tunnel. This forum really is so amazing , I feel a lot more positive now this evening. Thanks to you all

Lots of great experience and support on here, all best things to you both.Rx

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