5th Diaversary

[Monica]

Hi all

Today 5 years ago, Carol was diagnosed with Diabetes. Isn?t it strange that 5 years ago the 12th March was a Monday too. I mention this, because pre-diagnosis we had a very worrying week-end. We suspected Carol had Diabetes the week before diagnosis, but looking online about symptoms we never came across anywhere saying it?s serious and go to hospital straight away. So we dithered and dithered. Carol claimed that she wasn?t unwell and didn?t want to go to GP. She didn?t look unwell either. Then on Saturday, she felt really tired in the afternoon, so Mike rang NHS Direct at about 2pm and asked them if it could be Diabetes. As it was only a phone operator answering the phone, they told him a nurse would ring back. Well, she rang back at 12.30 am!!! That?s almost 11 hours later. She told us that yes it sounds like it and that we should give her as much to drink as she wants on Sunday and take her to GP on Monday. Not knowing any better, we did just that. On Monday morning I rang GP and got an appointment for 5pm. Carol still insisted that she wasn?t ill and insisted she wanted to go to school. I wasn?t happy, but I let her go 😱!!!
Anyway, we went to see GP, who tested Carol?s wee and then sent us straight to hospital. At 9pm, this little indian man wearing jeans walked into our private room. Mike was wondering what on earth he was doing there! Well, it was our consultant!!!!! We were amazed that he would come out especially to see us.
Carol and I spent 4 days in hospital, because they wouldn?t let us go home until we?d seen the consultant, the DSN and the dietician properly. Then we spent most of Thursday at the hospital, because we were not allowed to go home until we had a starter pack of everything. Because they didn?t have any glucagon at the pharmacy, it was 6pm before we left.
Carol insisted she wanted to go to school on Friday, because it was RED NOSE day. Unfortunately, she then got a sick bug (probably picked up at hospital)and couldn?t go.
Scroll forward 5 years:
Carol is now 15, has gone from 2 to 3 injections to MDI and now on pump. Carol loves her pump. The other day we discussed the Diaversary and Diabetes. She said she wouldn?t want to get rid of D now, which made me quite sad. I also asked her if she?d feel the same if she was still on MDI, short answer ? probably not.
Carol wants to take charge of her D, but I?m finding it hard, because she?s become secretive over her readings. She said what will you do when I move out. I mentioned that older kids still texts their mum the readings and discuss things that might need changing etc. Apart from carb counting she won?t let me do/help with anything. I totally feel pushed away. After all I've been in charge for 5 long years.

Sorry for such a long post.

 

[Steff]

Monica happy(?) diaversary to Carol a hard road for you all im sure, dont apologise for the length of your post either its been her own personal diabetic journey xx

 

[Monica]

Thanks Steff. Yes it's a happy diaversary, because we've survived D diagnosis and the traumas that go with it. Although it's atm a life sentence we're not stressing as much (well, I still stress over a high reading). And the pump helps to make life much easier. Remembering back to the beginning on 2 injections a day and restricting her food so severely - it was horrible.

 

[ukjohn]

Monica hi.

You have both been through a long hard journey together, and both come through very well. I know its difficult for a mum to let go, more so in this case where you have had to take the lead, but I think its now time to try and trust Carol a little, she is 15 years old and girls that age are far more mature than we were at that age, I'm sure she holds back her readings from you to try and keep a bit of responsability and independence for herself. Perhaps talking to her without treating her as a child, you may come up with a compremise which suits you both.Good luck.

John.

 

[MeanMom]

(((hugs))) for you both Monica.

I certainly understand why you feel like this Monica, but Carol has come such a long way since I've known you and I think she is so much more responsible now, you have both worked so hard.

And you have both been such a huge support to K and I (tho' Carol probably doesn't realise it😉) so thank you.

Wonder where we will all be in another 5 years?🙂

MM Xx
(nearly put my real name then 😱)

 

[Pumper_Sue]

Hi Monica,
Glad to hear Carol has an acceptance of her diabetes.

Mum's will alway's worry about their children it's natural. I'm in my 50's now and been on insulin for 47 years, my Mum still checks up on me 🙄 But that's what being a Mum is. It's a case of I have no idea how she feels about my diabetes the same as she has no idea how I feel about it.

I would suspect Carol is getting higher reading at time due to hormones/exams etc and thinks Mum would not aprove or will worry so best not say anything.
Perhaps her privacey over her numbers is because she feels as if she has done something wrong to get them so high? Perhaps explain to her it just a number so need to correct it and that's it.

All her actions are very normal of a teenager though

 

[Monica]

Thanks John and MM
I do realise that I have to let go, I just can't cope with the secrecy , simply because she's done things she shouldn't in the past, like not testing at school. So when she's being even more secretive, I always wonder what she's hiding. In the mornings I now look at the result on the monitor when she's not in the room. I've stopped asking what her lunch readings were (if there are any) and I look at the monitor before I go to bed (after C is already asleep).
I haven't downloaded the monitors' readings for at least a month now, told her she had to do it, because the consultant will want to see it. She still hasn't done it and I worry that the readings will get lost on the monitor before she does. I'll probably end up doing it the night before clinic in 2 weeks time. So if we don't look at the readings of the past, how do we know if we need to make changes?????

 

[Monica]

Hi Monica,
Glad to hear Carol has an acceptance of her diabetes.

Mum's will alway's worry about their children it's natural. I'm in my 50's now and been on insulin for 47 years, my Mum still checks up on me 🙄 But that's what being a Mum is. It's a case of I have no idea how she feels about my diabetes the same as she has no idea how I feel about it.

I would suspect Carol is getting higher reading at time due to hormones/exams etc and thinks Mum would not aprove or will worry so best not say anything.
Perhaps her privacey over her numbers is because she feels as if she has done something wrong to get them so high? Perhaps explain to her it just a number so need to correct it and that's it.

All her actions are very normal of a teenager though

LOL, poor Carol, I guess we'll be the same as you and your mum. I'll always worry!
Carol won't tell me her readings full stop. Even when they are 4.5.
You're right I don't react in the correct way when she's high, but then she doesn't tell me the full story straight away - like the other day, she was 18, but she didn't tell me she had a friji choc milkshake only 1 hour before. And she doesn't bolus beforehand, so no wonder it had shot up like that. We actually did discuss this afterwards in a very adult manner though 🙂

 

[Tina63]

Happy diaversary to Carol too.

I do feel for you Monica. I am in a similar, though different situation. As my son was days short of 16 at diagnosis, he has been taking control right from day 1. We were 100% included in all the education bit at the start, home visits were made and we were again expected to attend and take part, and for the first 6 months my son was ok-ish about me updating his diary from his monitor. I felt a massive need to know everything, after all, I am Mum, and who will pick up the pieces when anything goes wrong? I am the one who knew what was wrong with him before diagnosis, though I couldn't get him to agree to see the GP, and my husband kept saying he would take charge and MAKE him go, but he never did - men eh?

After a few months people (husband and daughter mainly) told me to back off and let him deal with it himself, eventually I think I was able to relax a little more (having dreaded some major catastrophe and an emergency hospital admission - which - touch wood - hasn't happened) and I did so, but then his control seemed to go to pot.

I know it coincided with GCSEs, I do think that has a lot to do with his lack of control across the summer, dreading hypos and drawing attention to himself in exams, so skipped insulin doses to keep high on purpose, then it just became a habit. He is a bit better now, having been put on mixed at breakfast time as he feels injecting at school is too much - he won't even entertain the idea of a pump, not that one has EVER been mentioned to us. If it wasn't for my own research, we wouldn't as a family even know pumps existed! His HbA1c is still way too high (11.2) but what can I do? It is coming down a bit, but day to day I dont' have a clue what he is doing. He is back to not testing at all (are you sure Carol is actually testing at the moment?) but I know he is injecting as he still leaves used needles all over his room. He is so lazy, I don't believe he would just pretend and leave needles all over the place, he just wouldn't bother to hide it.

I know I will never fully relax - how can I? I know he is secretly glad I am here and fighting his corner, he talks of uni but wants to live at home and commute. He says he simply has no desire to go partying, so why would he want to live there, but I think there is some amount of security at home with his mum. I may have him all wrong of course, but I know how my lad operates.

All I can advise is that you go with the flow. At least Carol has the pump, which from my understanding will help things to keep ticking along. If her control has always been so good she may well get some horrible symptoms if riding too high, so will learn the hard way.

Good luck!
Tina

 

[Monica]

Hi Tina

I remember your struggles. I have to admit although that Carol is mostly good looking after herself, she will not do certain things unless I tell her and that's when it all starts. Last night for example; she changed her cannula before dinner/tea, so she should have tested 2 hours later. I didn't remind her- she didn't do it.
I have no idea if she tests at lunchtime, but I do know she tests at home, because I look at the results when she's not looking.
Last night I was open and looked while she was there without asking her. Got told off for NOT asking her. Whatever I do is wrong 😱 I'm simply not allowed to take an interest.

 

[Monica]

Rubbish dinner/tea

I cooked curly fries and bacon for Carol yesterday. She always asks what's for tea. When she found out, she went "Yay, diaversary dinner" LOL

 

[Pumper_Sue]

I cooked curly fries and bacon for Carol yesterday. She always asks what's for tea. When she found out, she went "Yay, diaversary dinner" LOL

Lol nice one

 

[Pigeon]

Well done Carol and Monica on making it to 5 years, I'm sure there were times when you felt like you couldn't do it!

Just thought I'd chip in as it's 5 years for me soon too, we were probably feeling lousy at the same time! I'd left it about 6 months of losing weight and being desperately thirsty, went to the Doctor's on thursday before Easter and had a blood test then went to boyfriend's parents for the Easter weekend and ate chocolate and cake non-stop... Came home on Easter Monday (9th April, same as this year) to a letter from the GP advising me I had very high sugar levels and not to eat anything sweet until I got medical help😱 Had a quick panic that I would die there and then, cried a lot and stashed easter eggs out of sight thinking I would never eat chocolate again.

5 years on and I don't think life is that different to before, really. I just carb count my easter eggs now Off to boyfrien's parents again for Easter this year, hopefully I won't come back to a big shock this time.

 

[Northerner]

Well done to you and Carol 🙂 That's quite a journey from 10 to 17b years old for anyone, let alone having to deal with diabetes, so I think it is terrific that Carol has dealt with things so well - she might not be Miss Perfect Diabetes, but she's doing pretty well! 🙂

 

[Tina63]

Hi Tina

I remember your struggles. I have to admit although that Carol is mostly good looking after herself, she will not do certain things unless I tell her and that's when it all starts. Last night for example; she changed her cannula before dinner/tea, so she should have tested 2 hours later. I didn't remind her- she didn't do it.
I have no idea if she tests at lunchtime, but I do know she tests at home, because I look at the results when she's not looking.
Last night I was open and looked while she was there without asking her. Got told off for NOT asking her. Whatever I do is wrong 😱 I'm simply not allowed to take an interest.

No, that's exactly where we are at. My lad agreed at a meeting with his DSN and dietician back in January that it was acceptable for me to remind him once each time to test/inject, it was also agreed that I would update his diary from his monitor (his choice) and that once a week we would go through the book and check the levels and look for patterns, but we are back to there simply being no information to update. If I mention him testing he tells me to mind my own business, if I try and say anything D related I get told its his problem and not mine.

I tried to say tonight that he mustn't forget to inject as he had been working 4-10 at Homebase and hadn't had dinner before he went. I had him a meal prepared but he went raiding the cupboard and shopping bags for food and was just eating ridiculous amounts, having NOT injected up front. I dread to think of his levels right now, but as soon as I say ANYTHING he goes off on one at me.

He had clinic a couple of weeks ago and I knew his levels of insulin had been increased, but I didn't know what to. They have upped both his Humilin and his Lantus by 2u, and they negotiated apparently a set 7u of Novorapid straight after school to cover his big time snacking when getting home, then carb counting dinner in the evening. As I have no results from these last two weeks I don't know if it is making a significant difference or not.

Oh how I would like to hold him down and test him, but of course I can't. I just hope that one day, before too long, he has a 'lightbulb moment' and starts taking proper care of himself.

I guess I am also trying to say to you you probably have far worse things to come before things even out again. These teenage years are a nightmare!

 

[Monica]

I guess I am also trying to say to you you probably have far worse things to come before things even out again. These teenage years are a nightmare!

I'm dreading it big time!!!!
She wants to go and stay with a friend down south on her own, but how can I let her go, if I can't trust her to do what's necessary?