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New Mum of T1

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vikki2683

New Member
Relationship to Diabetes
Parent of person with diabetes
Hi

My 9 year old daughter was diagnosed a week ago today. Feeling totally bewildered and emotional, although she is taking it in her stride. People seem to want to tell me the worst case scenario stories which leaves me feeling terrified. I know it will take time to adjust, but it all seems so overwhelming just now.

Vikki
 
Ignore all those stupid people, they know nothing! The outlook for diabetic children these days is very good now, no reason why they shouldn't live as long as anyone else as long as they look after themselves. Which could be said for all of us really!

Yes it's tough at first, but it does get easier. It's a lot to learn and you do have to grieve, for the "perfect" life that you've lost. But you will eventually come out the other side much stronger and there really isn't much that your daughter won't be able to do, it just takes a bit more planning, not very easy to be spontaneous any more, just because of all the stuff you have to carry around with you!

Keep asking questions, either to your medical team or on here. We've all been there before, confused and not having a clue but having to learn very fast. No question is too stupid, we've probably all asked them before! I'd like to write more now but have got loads to do, sorry... Welcome to the forum anyway 🙂
 
One of my good friends, who is also a mum of 3 and paediatric nurse told me today about a friend of a friend who passed away due to it. I just stood there completely speechless, before going home and bursting into tears.

I think it is a period of grief just now, for what we had and didn't realise how easy it was. All medical professionals, school etc have been so positive and supportive and this has helped. I've always been extremely organised, so that will be put to the test!

Really appreciate your reply and thank you.

Vikki
 
Welcom Vikki to the forum no one wants to need to join. This is a place where you will find plenty of help and support from people who ‘have been there’, as opposed to those reporting news of someone they knew ....

As @Sally71 has said, youngsters and adults with T1 can do anything that they want, it just takes a bit of planning. One week in you are both on a steep learning curve. It is good to hear that your daughter is taking it in her stride and that you have good support around at school and from your diabetes team, and it definitely does get easier, which I know may be hard to believe at present.

Your Diabetes team are there to help you and they will gradually teach you both how to adjust your insulin to suit your daughter and all that she wants to do. Don’t worry about contacting them if you are worried, threat is their job and they know how much there is to take on board.

One book that I have found very useful is Type 1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas. It explains things clearly and is regularly updated, so worth looking for the latest edition. This is mainly because there have been so many recent developments in management techniques for T1 which are making things a lot better.

There is plenty of experience to draw on on here, including a number of parents who have been through what you are dealing with at present. Whether you want a rant, a moan, some advice, this is a good place for it. Keep in touch, and I promise IT DOES GET EASIER.
 
Ps
Ignore the ignorance of others. Listen to those that know. This is a manageable condition.

I find that a lot of people base their ‘advice and information’ on a lot of heresay and rediculous ‘news reports’. In a while you will no doubt be joining the rest of us shouting at the TV or radio as we heartbeat another piece of misinformation.
 
@SB2015 thank you. I'm determined to support her to do anything that she wants to. She is a keen competitive gymnast, and will hopefully be back to it next week. I think the sooner we try to find our 'new normal' the better. It was just such a shock as she had only displayed symptoms for around 10 days, so when she went to the doctors to be checked, T1 wasn't even on my radar. She is delighted that she gets to skip the lunch queue to get to the front, so she is seeing some positives!

I know people aren't intentionally trying to scare me, but I want to tell them to think before they open their mouths! Its just beyond belief what some have said. I can tell it will make me want to vent!

Although I wouldn't wish this on anyone, it is comforting to know that there are people here to talk to who understand it all. This is making what was a pretty rubbish start to the day better! Just had a phone call from the school to say Hollie hypo'd after PE, but that was her first session and the consultant did say it will be trial and error until we work out what works for her.

Away to work for a few hours, where I will no doubt be keeping my eye on the phone!

Vikki
 
vikki2683 said:
@SB2015 thank you. I'm determined to support her to do anything that she wants to. She is a keen competitive gymnast, and will hopefully be back to it next week. I think the sooner we try to find our 'new normal' the better. It was just such a shock as she had only displayed symptoms for around 10 days, so when she went to the doctors to be checked, T1 wasn't even on my radar. She is delighted that she gets to skip the lunch queue to get to the front, so she is seeing some positives!

I know people aren't intentionally trying to scare me, but I want to tell them to think before they open their mouths! Its just beyond belief what some have said. I can tell it will make me want to vent!

Although I wouldn't wish this on anyone, it is comforting to know that there are people here to talk to who understand it all. This is making what was a pretty rubbish start to the day better! Just had a phone call from the school to say Hollie hypo'd after PE, but that was her first session and the consultant did say it will be trial and error until we work out what works for her.

Away to work for a few hours, where I will no doubt be keeping my eye on the phone!

Vikki
Click to expand...
Well done Vikki. I will look out the ‘10 things not say to someone with T1’. (@Northerner might help out if I have my usual struggles with tech stuff) They make me laugh now. I met someone on a course and in a 15 min chat he managed to score 7 out of the 10. I was laughing about it and when I told him, he looked up the rest, and then spent a load of time finding out a lot more about T1. He came back the next day apologised, and thanked me. He had a friend with T1 and had no idea about it.

Hypos are a normal part of T1. I am sat here recovering from one. Just one of those things.
As her DSN has said it takes time to get doses sorted. What insulins is your daughter using?
 
Sally71 said:
But you will eventually come out the other side much stronger and there really isn't much that your daughter won't be able to do, it just takes a bit more planning, not very easy to be spontaneous any more, just because of all the stuff you have to carry around with you!
Click to expand...

Yes, no "oh it's late, I'll just stay overnight" (unless you carry around your basal insulin).

Diabetes is still a serious, chronic condition. And several times a day you're injecting a drug where the wrong dose can be fatal or (long term) damaging. But it is possible to live with it, even so, and (especially since MDI/pumps) permits a lot of freedom in exercise and eating, especially with some planning.
 
I don't know why people think that telling you all their doom and gloom stories is helpful, I realise that they probably don't know what to say when faced with your news, but surely saying nothing is better than telling you who they know who has died or lost limbs because of diabetes! Serious complications normally only happen if you haven't looked after yourself well, so try and get your daughter into good habits right from the beginning. You'll still get some days when it all goes wrong, but as long as these aren't happening regularly and you are doing your best to try and keep the blood sugars under control, then she should be fine. If it helps, my mum is now 74, has had type 1 for 52 years and is still going strong! And when she was diagnosed in 1967 there were no home blood testing kits, only pee sticks which really don't tell you much by comparison, insulins were much less refined and you had to eat similar amounts of food at similar times every day or you were in trouble. Her blood sugars were probably up and down and all over the place a lot worse than my daughter's are and she's still pretty fit. Today with newer insulins, carb counting, pumps and so on people have a lot more freedom to eat what they want when they want, and a much better chance of keeping blood sugars under control, as long as they put the effort in. It all seems really hard right now but it does eventually become second nature, honest!
 
We have shedloads of long-term T1 members here Vikki - some diagnosed far younger than your daughter - who have all had comfortable and enjoyable lives and not let the inconvenience and tedium of diabetes prevent em doing anything they've ever wanted to do. There are people who can regale you with horror stories - but as I was 22 when I was diagnosed, I told myself virtually from the outset that 'Well - I ain't gonna let THAT happen to ME!!' so that was always my aim and still is to this day. Oh and guess what? It hasn't so far.

It's a bit like one of the old American famous golfers (Arnold Palmer) said years ago - that 'wasn't it a coincidence' that he'd found over the years that the more he practiced the luckier he got when playing competitively? LOL

And diabetes is much the same as golf !

It does get easier. It honestly does.
 
Hello and welcome 🙂
Sorry to hear of your daughters diagnosis, sounds like you're both doing really well with the practicalities. Ignore the doom sayers, for some reason certain people love to give worst case scenarios when someone has a condition, very rude! Technical advancements in the management of diabetes such as pumps and flash glucose monitors are excellent and helping many of us and are an option for your daughter too 🙂
Members on here include cyclists, triatheletes, marathon runners, competitive swimmers, hikers and dancers, to name but a few!

You'll soon get your head around it with the support from your daughters team, and on here! There is a parents section on the forum and Facebook groups for parents for support. Soon enough it will become the new 'normal' for you both. I'm tagging in @Bronco Billy as he has two children with T1 and can help with knowledge, support and signposting for information.
I hope your daughter resumes her gymnastics very soon 🙂
 
SB2015 said:
Well done Vikki. I will look out the ‘10 things not say to someone with T1’. (@Northerner might help out if I have my usual struggles with tech stuff) They make me laugh now. I met someone on a course and in a 15 min chat he managed to score 7 out of the 10. I was laughing about it and when I told him, he looked up the rest, and then spent a load of time finding out a lot more about T1. He came back the next day apologised, and thanked me. He had a friend with T1 and had no idea about it.

Hypos are a normal part of T1. I am sat here recovering from one. Just one of those things.
As her DSN has said it takes time to get doses sorted. What insulins is your daughter using?
Click to expand...

@Lucy Honeychurch thank you. I'm away to have a read through this and will hopefully give me a laugh! I think a lot of it is people not knowing what to say or not knowing the facts. She's using novo rapid x3 daily and levemir for night. We're back to the hospital on Thursday to see the nurses, so hoping that I can learn more then.
 
Sally71 said:
I don't know why people think that telling you all their doom and gloom stories is helpful, I realise that they probably don't know what to say when faced with your news, but surely saying nothing is better than telling you who they know who has died or lost limbs because of diabetes! Serious complications normally only happen if you haven't looked after yourself well, so try and get your daughter into good habits right from the beginning. You'll still get some days when it all goes wrong, but as long as these aren't happening regularly and you are doing your best to try and keep the blood sugars under control, then she should be fine. If it helps, my mum is now 74, has had type 1 for 52 years and is still going strong! And when she was diagnosed in 1967 there were no home blood testing kits, only pee sticks which really don't tell you much by comparison, insulins were much less refined and you had to eat similar amounts of food at similar times every day or you were in trouble. Her blood sugars were probably up and down and all over the place a lot worse than my daughter's are and she's still pretty fit. Today with newer insulins, carb counting, pumps and so on people have a lot more freedom to eat what they want when they want, and a much better chance of keeping blood sugars under control, as long as they put the effort in. It all seems really hard right now but it does eventually become second nature, honest!
Click to expand...
@Sally71 I would prefer silence to some of the stuff I've heard this past week! I'm trying to keep that at the forefront of my mind, that to get to that point it would usually be because of a series of events. That must have been tough for her when she was diagnosed, but is another good positive example. I'm trying to get into a pattern now of eating right, being aware of what her body is telling her and testing/injection. Thank you! Right now, it just all feels terrifying and sad but it's good to have that hope of it becoming easier.
 
vikki2683 said:
@Sally71 I would prefer silence to some of the stuff I've heard this past week! I'm trying to keep that at the forefront of my mind, that to get to that point it would usually be because of a series of events. That must have been tough for her when she was diagnosed, but is another good positive example. I'm trying to get into a pattern now of eating right, being aware of what her body is telling her and testing/injection. Thank you! Right now, it just all feels terrifying and sad but it's good to have that hope of it becoming easier.
Click to expand...
As you have said yourself Vikki, this will all become your new normal life.
I hope that work went well today and that your daughter’s day settled after her hypo.

@trophywench likened it to golf, I liken it to learning to drive. That seemed so complicated to me when I first started and now the changing gear, looking in the mirror, ... is all automatic. There are jams on route but you just have to be patient and get through them. Same with all this.
 
I like the @SB2015 analogy.

When there happens to be total gridlock or some other delay - we certainly can't get out of the car and abandon it in the centre of a main road - just have to wait until an opportunity to take a detour round the mayhem occur. And that's diabetes. I've tried coming this way - and it didn't work. What other ways can I try to get past this blockage?
 
Hi Vikki, welcome to the club

I remember bewildered and emotional, it seems like only yesterday instead of over nine years ago. Diagnosis is one heck of a rollercoaster. The thing to never forget is that, while the ride never stops, it does calm down. What seems very confusing now will soon become routine and part of everyday life.

It’s shocking that your nurse friend could tell you such a thing! It would be a lie to say what she told you never happens, but it is very rare. On the plus side, I’m delighted to hear that the school have been supportive. If you have any questions related to school life, there is a ‘diabetes in school’ board to make use of. The consultant is absolutely right, it will be trial and error. Did your daughter have a snack before PE? My two have a fun size milky way if their numbers are around the normal range of 4-7, it has 10 carbs in it.

You will have realised by now that it isn’t just school life that is trial and error, life in general is. Eventually, it’s more a case of what I call expert guesswork; you’re faced with a situation, you know what you need to do to deal with it, you do it and then cross your fingers that what should happen happens. It’s important that you aren’t harsh on yourself if you feel you have got something wrong and that you pat yourself on the back when you get it right – and you will get it right more than you make mistakes.

Gymnastics will possibly be even more important to your daughter now. It’s something she enjoys, but now it will show her she is just like all her peers still. My daughter is a keen swimmer and swum for the local club for a while. This provided her with the boost she needed to know she wasn’t different from everyone else, she just had this bloomin’ condition to live with. My son has just taken up taekwon-do. Type 1 hasn’t stopped them doing anything and it won’t stop your daughter doing anything either. Yes, life has to be more planned now, but it is there to be lived and she can live a normal life.

Don’t be afraid to ask any questions you think of. No question is too silly.

Here are a couple more videos to make you chuckle. Take care.

https://www.facebook.com/video.php?v=10155097139293947

 
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