Weight gain and dietician grief

[Lilmssquirrel]

We're now ten days in and I've just had an email from the dietician telling me DD has put on 2.5kg since diagnosis and she's on the 98th centile which is bad (she's 99th centile for heigh) and I am sat here in floods of tears and so angry at this bloody disease and I don't know how to live any more.

Her blood sugar monitor has stopped working now too. Please tell me it gets better (without telling me I'm lucky to be alive in the days of technology)

 

[Alannah]

It does, it will, I promise. There will still be some moments in the future where it all feels impossible, but they will get fewer and further apart as you learn more about this, and as your daughter does do. A lot that takes up enormous mental energy at the moment will become almost automatic. Whether that's carb counting, diet, bolusing, etc.

It's not surprising your daughter has put weight on, as she most probably lost it in the weeks before diagnosis. Sounds like the dietician wasn't being the most sensitive in choice of words to you. I'm sorry that happened. Your daughter's weight, or her diet did not cause her to have Type 1 in case that is worrying you.

Can I urge you to seek support for yourself, through family or a trusted friend, or perhaps through some counselling. You are only 10 days in, and the learning curve is steep, so please give yourself a break. You are doing fine.

 

[Lisa66]

I know it all feels so overwhelming at the moment, but it absolutely will get easier. We all how ever long diagnosed, have occasional frustrating moments, when we want to through our meters out the window...but generally they aren’t often and you will learn not to sweat about the small stuff. With any new condition there’s no 10 week course to see how you get on and ease yourself in...it’s full on from the start...so much to take in. You sound exhausted. Do you have people around to share everything with. I do understand though that as a mum, you automatically want to be in control and responsible for everything.

I put on weight after I was diagnosed, as @Alannah has already said, presumably your daughter had lost weight pre diagnosis, as I had. I have found sometimes the dieticians, as knowledgeable and helpful as they are, don’t always see the bigger picture.

So what’s happened with the meter? Have you managed to get it working again?

How’s your daughter getting on...and how was the birthday party.

Have you got anything nice planned for this afternoon or weekend? You are doing really well...cut yourself a bit of slack. X

 

[Lilmssquirrel]

Thanks ladies

@Alannah - she'd lost a fair bit of weight. TBH I don't know how much but when I saw her in hospital in her vest, I was floored by how much. She's just hit ten and has finally gotten the message about getting herself dressed in her room rather than parading round the house demanding that a grown up help her dress. We got married on her tenth birthday, the weekend before lockdown so I have photographs up the yingyang of her that day. She was my happy, overly chubby princess. Now when I look at her, she's suddenly this tall, in proportion pre-teen, mostly styling this disease out whilst her mother slowly crumbles with the grief and burden of it all. Clearly I don't want her to go back to being so overweight (previously discussed with GP several times and told as she's active she'd lose it when she hit puberty - oh the irony!)

@Lisa66 I am exhausted if I'm honest. I've got an ex husband who is just throwing rocks at me, a mother who listens to what my daughter tells her from the hospital and then is suddenly the expert and tells me that the world is all fine without really seeing how bloody hard this is and how much I've had to learn in the last ten days. She's joined the club of "well you've got all the tech - when your step cousin had it in the eighties...blah blah blah..." Which is fine, except when the blooming tech breaks ten days in, its all suddenly even more scary.

Roche are sending out a replacement monitor but in the meantime, hubby worked out one of the battery connectors was loose so it's been fixed with a bit of tin foil. Still it was probably timely as I've now got how to do manual calcs ingrained on my brain.

Wowsers - sorry for the whiney-arsing. It's been a rough 24 hours and the dietician just tipped me over the edge.

But then she didn't know I'd been sat up all night, waiting for my dog to regurgitate my most expensive silicone cake pan that he seemed to think was edible - which seemed the ultimate kicker when it was the first time I'd gone to bed thinking I could survive the night without worrying about DD

Anyhoo, I'm back in the room now - we can do this! xx

 

[Lisa66]

Yes you can!!

Gosh you have got it from all angles haven’t you. I’m sure your mum is concerned about you and your daughter and trying to help, but it is blooming annoying when everyone seems to suddenly become an expert.... sadly you will always get a bit of this and it’s taken me quite a lot of years to count to ten, often more, and just to smile politely. Yes the tech is great and will be even greater very quickly, but it still takes lots of getting used to... if you gave your mum the new tech would she immediately be a whizz with it, I somehow doubt it.

No worries for the Whitney-arsing...particularly as I love that phrase and am going to pinch it. Big hugs to you....go and kick that diabetes ass! Or whatever the phrase is

 

[Bronco Billy]

Personally, I’d be relieved at the weight gain if she had lost weight pre-diagnosis. Has the dietician had specialist diabetes training? A lot of them haven’t. I also wouldn’t be overly bothered at this stage if her weight centile is similar to her height centile. Have you checked her BMI index?

It’s important to remember that technology is only a glamorous assistant, it isn’t the magician that knows all the tricks, that’s you! You’re doing great and know more than you realise.

 

[Pumper_Sue]

The weight gain just means you are doing a good job. Take a nice big deep breath and slowly relax, Rome wasn't built in a day. Yep life has it's ups and downs whether you have diabetes or not. Things do get better as time goes on.

If it helps you at all I was diagnosed as a 4 1/2 year old child back in 1965. I have no diabetes complications and back in the days of the ark there was no such thing as glucose meters sensors or pumps. Yet I have survived................ nope I rephrase that and say I have lived not just survived. I have done all I wanted to do in life and more.

You and your daughter will be fine take one day at a time and it will all be second nature and a new normal.
Unfortunately people normally only hear about the negative/horror side of diabetes without even mentioning the many millions who sail through life quite happily without problems.

Yes diabetes is very frustrating at times but then so is life in general

Your daughter has insulin the elixir of life so think positive

 

[trophywench]

No worries for the Whitney-arsing...particularly as I love that phrase and am going to pinch it. Big hugs to you....go and kick that diabetes ass! Or whatever the phrase is

It was her arse that was whining, surely Lisa? I recommend Rennies when mine does that! - and keep off fizzy drinks luv. Still as long as your bowels are working as well as they seem to be (and @Northener and Giulia Enders both recommend) I'm sure you'll get over it, just don't wander too far from a lavvy for a bit.
Dunno about you @Lilmssquirrel - but @Lisa66 's typo has highly amused me.

You could always tell your mother that an awful lot has changed in the last 40 years - but that does NOT make being newly diagnosed any simpler whatever and since she hasn't a clue what it's really like either now or then, it would be better for her to not pass comment about things she's never experienced and instead try and give you some moral support when you need it. Please!

 

[Lilmssquirrel]

@trophywench yep I laughed out loud about the Whitney-arsing - I'm stealing that

I think I do know what I'm doing manually - I'm just so tired that when the tech goes wrong it sends me in to a bit of a flat spin with all the other stuff that is bubbling on around us (dogs eating cake tins and sicking them back up again etc).

I feel like I did back when DD was two and I realised that after all my scornful thoughts about mothers that couldn't keep their kids temper tantrum under control that I was an awful person for having judged them because mine did exactly the same and I couldn't control her either. You really don't get how hard something is until you live through it. And I know in time, like so many other things that you get through those first few awful days and weeks and in time look back and remember how bad it was and how great you are for surviving.

Equally it's so contrasting to where we were 20 weeks ago today. DD turned 10, and we had an amazing wedding one week before lockdown began.

14 weeks later on Father's day, we rescued a dog from Corfu (he arrived at 1.30am), my beloved Grandad who bought me up as his daughter passed away that same afternoon. And then we get this. It's felt like one sucker punch after another. And then to have my life and my relationship with my ex husband scrutinised (pretty much absent, pays £30 a month, sees her one night a month, rarely contacts between visits and never asks how she is) I literally feel quite empty. And nobody else will get that complexity unless they've lived it.


Right, that's today's Whitney-arsing off my chest. Thanks, @trophywench, @Bronco Billy, @Pumper_Sue and @Lisa66 for sharing the lived experiences. You have no idea how much it all helps xx

 

[Lisa66]

Well @trophywench, I aim to please

I typed that phrase so many times and autocorrect did not like it...should have checked again. I now have lots of information that I really didn’t expect...and thankfully don’t need...but I am pleased that I don’t like fizzy drinks...and pleased that you have found a remedy that works for you....I now like both phrases

 

[stephknits]

Sometimes people just don't think do they! At our first consultant appointment a few weeks ago the consultant announced gleefully to the room that Alice had put on a whole stone! She was mortified - no 16 yr old wants to be told they have put on a stone, especially not in just a few weeks! I quickly added out loud to her that this was normal and was a positive thing as she was putting back on weight lost. My daughter is really tall - at 97 centile and in the 80s for weight and is healthy.
If I hadn't known better though, I might have thought we were doing something wrong - just needed the context!
Take care and keep Whitney-arsing