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Will I get used to this?

(8 Posts)
MilkAndFenty Fri 20-May-16 23:58:31

My ds2 isn't diabetic but similar management. He has a condition which is basicly the opposite (pancreas makes too much insulin) he is 10months old and just as I think I'm getting used to it I feel overwhelmed by it all- he is too young for cgm, or a pump (his meds can go through a pump) we can only inject his thighs or bum and they are lumpy and bruised as they are so small. Injecting is a challenge as he moves a lot and his needles are now the 5gauge ones that go in at a 45degree angle- impossible!
Just as we think he's stable he throws us a mega hypo which is still so scary as his risk of brain damage when this happens is high. Add in his pump feeds (his is fed through gastostromy to keeps his sugars stable, especially overnight when he is fed continuously) endless blood sugar tests and various nasty side effects from meds, I just get very overwhelmed by it all. How will he cope at school? What happens when he's a teenager and wants a drink? I can't help but worry about all these things to come! My husband worries about the here and now and I know I should too but it's so exhausting I can't imagine the future.

Brenna24 Sat 21-May-16 00:01:29

I don't have any experience for you. It must be exhausting and very frightening. But I have several friends who grew up with various conditions. It was far harder for their parents to adapt to than for them, who never knew any different. He will be teaching you how to do things by the time he is 5. I am sure you will have some horrible moments with things over the years but they will get further and further apart and you will still have many good times with him. flowers

mountaintoclimb Sat 21-May-16 00:02:05

So sorry to hear that op. However medical science moves so fast that hopefully there will be a remedy by the time your ds grows up. Don't give up hope.

MilkAndFenty Sat 21-May-16 00:16:29

I guess I just feel so petrified that his life is in our hands 24/7. I know that's the case with all children but you know what I mean. We have an elder son aged 3 and he's very full on so its all very exhausting! We never get a break as everyone is too scared to babysit him and I miss having time away with my DH- I don't mean holidays or anything, I just mean a trip to the cinema or a meal out! I feel trapped in the house. I love my DS to bits, but im finding the lack of support from family very disheartening- they were good with our eldest and would have him from time to time but now we don't really any break from it. I'm up now as we have to do an injection and a test at midnight every night, then up again at 6 to do it all again.

MilkAndFenty Sat 21-May-16 00:17:42

Brenna I know it's harder for us than him but I worry about when he's older and gets upset thy he can't do what his friends are doing. I just find that very sad.

Brenna24 Sat 21-May-16 09:48:31

Huge hugs milk. I can't even begin to imagine what it is like for you. That is so sad that your family aren't chipping in more. I get that it is scary but they could learn how to help out for a couple of hours.

My best friend growing up had cystic fibrosis. We met at age 9 when I moved schools. She grew up knowing she was ill and had to be very careful but it just made her so much more determined to live her life to the full when and where she could. Sometimes it did get her down, but really not that often, she remains my inspiration to this day as she just refused to let it get her down permanently. Her ambition was to go to university. She had some really bad episodes during high school and spent 9 months in hospital during her highers. She made it into St Andrews university. She was very poorly by then and only lived for 6 weeks of the first term, but she had a ball in that time. When she died, she died happy to have done what she did. She was a horror as a teenager - I remember her lying out sunbathing and her Mum coming out and telling her she shouldn't get so much sun. Her answer was the predictable - well I don't need to worry about cancer, so I might as well have the fun. She said to me many times that while she wasn't ready to die then, she kind of enjoyed not having to worry about saving and mortgages and pensions and was just going to spend her money on doing whatever she wanted at the time. When we met she had never done a sleep over. My Mum learnt all her physio and pills and my house was the first one she stayed in. I was so proud of mum for doing it. I hope that someone will do that for you.

MilkAndFenty Sat 21-May-16 22:06:02

Brenna those are lovely memories of your friend, she sounds inspirational and full of vitality. My Grandma was like that even facing death. Some people just have a way of approaching life that is very humbling to those around them. For your friend to have that approach at such a young age is remarkable. I imagine you must think of her often. And how amazing of your mum to do that for your friend and for you. I know how much pressure the medication is, it can very daunting to those who aren't used to it.
I hope too that one day we will get a bit more support from family- only time will tell!
Thank you for your kind words- mumsnet never fails to amaze me. The kindness of strangers is wonderful, and when there is no one I can talk to in the real world, mumsnet ways saves the day!
flowers

Brenna24 Mon 23-May-16 08:44:59

flowers I really hope so too for you. Yes, 20 years after she died I still think of her. I still mark her birthday and the day we lost her. I believe that we never truely die but live on in the memories of those who loved us. My Mum drives me bonkers at times, but she is one in a million.

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