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It’s all just so unfair

Discussion in 'Parents' started by Dawnandkids, Feb 4, 2021.

  1. Dawnandkids

    Dawnandkids · Member

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    I’m in a major sulk/ depression about my daughter having diabetes. She was diagnosed in May last year when she was 3 - I’ve just been helping her with her mental health and trying so stay positive and supportive. I’m usually very good at not getting upset about the things I can’t control and focussing on the things I can. But actually what I thought I could control, I can’t, and this week it’s really starting to **** me off!! ive read all the books, I’ve ordered all the low carb alternatives, I’ve started making interesting packed lunches for school (so she’s not upset that she can’t eat the 110 carb lunch they provide the other kids there) - but despite all this effort her sugars are just an ever changing beast!!

    I just want to moan. I feel angry that I put it all this extra effort to keep my child healthy but actually overall she is less healthy than my friends child who basically eats crisps and sweets every day. It’s just so unfair for her. Ive had enough and I just want it to go away now.
     
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  2. Heyrehair

    Heyrehair Parent · Active Member

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    Hi,

    Sorry to hear you are feeling this way.

    I think a lot of us in the community, be it those with T1, or parents etc have felt this way at times. The last year certainly hasn't made it any easier.

    The journey can be a roller-coaster, or like a Dexcom graph on a tough day .

    Take care.
     
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  3. Grant_Vicat

    Grant_Vicat Don't have diabetes · Well-Known Member

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    Hi @Dawnandkids I fully understand your feelings. This underlines why life can never be fair, we can only aim to make it as fair as possible. Your daughter must be Type 1, which can give her more freedom of choice than a Type 2 following a LCHF diet.
    I was Type 1 from 1959-2013 and on a carbohydrate controlled diet from 1966-2013. At 240gms of carbohydrate spread at routine times this certainly wasn't low carb, but I have maintained the same weight from 1978 to this day. I just wonder whether you need to restrict her diet? I am certainly not advocating eating junk food, but maybe providing a greater range of options. I hope life improves for both of you quickly.
     
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  4. Dawnandkids

    Dawnandkids · Member

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    Thank you both for your reply. I’m feeling a bit better today having had a good cry for the last couple of days actually. My daughters sugars are doing well overall, but I just always want to get them better. I have this drive that if I can keep them ‘normal’ until technology allows accurate control, or better still, a cure, I can keep her as healthy as a non diabetic long term. I spoke to a few people who found their sugars were much better if they had less carbs (less room for error) so that’s why I tried to start thinking about substituting carbs for alternatives to see if this would help. I felt really motivated when I saw good results initially but then have come down hard this week as they are not behaving as I would like. Makes me feel helpless and frustrated that I can’t control it better for her. Letting her and her body down. I know that no matter how good her sugars are, I will always want them better and never be happy. I need to work on that.
    I also wonder whether I’m holding on to hope of the future too much rather than coming to terms with the here and now.
     
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  5. Rokaab

    Rokaab Type 1 · Well-Known Member

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    One things to remember is that the body is very chaotic, it is impossible to replicate exactly what the body does when using injected insulin, there will always be days where it just does not play fair and blood sugars just will not behave, whilst we don't want this sometimes it does and your daughter must know that it can happen through not fault of her own even if she does her best.

    The teenage years may well be completely chaotic, I dont have HbA1C results for back then (don't think they did them) but that's probably just as well :)
     
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  6. Bic

    Bic Type 1 · Well-Known Member

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    Dear Dawnandkids,
    coming to terms with a T1 diagnosis is always very hard, and so much more for a parent. I don't think I can imagine what you are going through, as I have no children. Only, I have been living with T1 for more than 35 years now, so I hope I can be of help if I put in a word.
    What I have to say is this: please consider that blood sugars are not always first and foremost, when it comes to a child. Children need to grow up, to learn, to take part in many different activities, to make friends with other children, and a lot more. Please get in touch with your daughter's health team and be open about the problems you are facing. They should be able to support you and give the best advice about food choices for a growing, learning and active child. They will probably suggest a little more relaxed attitude about what you daughter 'can' or 'cannot' eat… Often, it is so much more important that she does not feel isolated or singled out, than she has perfect blood sugars each and every time. Plus, when you l get a little more confident with managing her condition, you will see that children with T1 diabetes should eat very much like any other child, including sweets and treats, once they (or you) know how to compensate with the right insulin doses. Don't get discouraged. Just ask your daughter's health team for the help you are perfectly entitled to get!
     
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  7. Dawnandkids

    Dawnandkids · Member

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    Thank you. Rokaab you have raised a very good point about my daughter not blaming herself for her sugars not being in range when she starts managing this herself. If she has grown up seeing me and my husband get cross and upset based on her sugars this could be very damaging (although obviously we don’t do this in front of her but kids do pick these things up). Bic thank you - the way you are describing how I should approach this, allowing her to be the same as everyone else etc, has been the way I have actually approached it for the past 9 months, and I was definitely in a better place with it then. Since this lockdown my daughter has needed to go to school and me and my husband are both key workers. The school aren’t able to provide hot lunches and so the kids have very carb heavy meals - like I said up to 110g carbs. We changed the ratios and titrated the basal, but her body just couldn’t handle that volume - sugars running at 14-18 all afternoon then would come crashing down due to all the correction doses around tea time/ bedtime. So we had to move to packed lunches and it’s at this point I became much more driven to try and give her a healthy balanced and low carb diet. But maybe I just need to meet my former self somewhere in the middle.
    I am so grateful for you all taking time out of your day to reply- to make me feel better and offer advice. Thank you so much.
    Xx
     
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  8. beckyboo12

    beckyboo12 Type 1 · Member

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    Hi dawnandkids I know what you are going through my son is 17 now he was diagnosed when he was 7 as the years have gone on we have had our ups& down teenage years can be some times a nightmare I worried about sugar levels whenever he went out with his friends especially if new friends didn't understand about diabetes.his diabetes nurse was great.at first I couldn't take it in like you worried about his readings all the time.as a parent of kids who are diabetics you do worry. just know your not alone I think it good having somewhere you can go on to get advice or just have a moan or sulk hope your doing ok now
     
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  9. Dad2type1

    Dad2type1 · Member

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    My daughter got diagnosed on Thursday and I feel exactly the same ,

    I’m so angry and sad that she hasn’t done anything wrong and doesn’t deserve it

    It’s made me so sad I don’t want to know she’s so sad on the inside
     
  10. Juicyj

    Juicyj Type 1 · Expert
    Retired Moderator

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    Sorry to hear about your daughter, however what you're feeling as her dad is completely normal. It is a great shock and emotions felt by parents are similar to the grieving process, so emotions like denial, blame, anger, sadness are part of this. Children are more resilient than us at adapting to change and dealing with this, what will help you greatly is learning more about the condition so being well equipped to cope with all the tools to manage it. Her aim is to have a normal life and as a person who has had type 1 for almost 10 years now, I can tell you that it was hard to deal with, but it does become second nature and life will get easier, it hasn't stopped me doing anything and if anything I now challenge myself more. Have a read of this thread which I feel all newly diagnosed people and relatives should read with type 1: https://www.diabetes.co.uk/forum/threads/5-things-any-newly-diagnosed-type-1-should-know.175425/
     
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  11. Dad2type1

    Dad2type1 · Member

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    Thank you I will read it now
     
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