Am I the only one?

[SamFergusson]

Hi,

I am 28 & I've had T1 for 21 years now.
I can openly admit that I rebelled during my teenage years & went off the rails a little. Now I am older & wanting to start a family I would like to have my diabetes under control. But I am finding it really difficult. My levels are all over the place, I don't understand carb counting & just can't seem to get my head into what I need to do.
I started seeing my diabetic nurse for the first time in a long time & I just felt like I couldn't be honest with her as from the first 5 minutes of sitting with her she was so judgmental & opinionated I just put my defenses up. She made me feel like I was the only diabetic in the world who couldn't cope.

Am I?

 

[LucyM88]

No. To be blunt...you are not! I'm just getting over my rebellious time. I'm 27 and have had diabetes for 15 years. I won't tell you how many times I was in hospital with DKA. I don't do carb counting either. But what matters now is gaining control of your disease NOW.
Maybe try and be totally honest with your diabetes nurse. I did this with mine...kinda went like this:

"I'm not the best and you can have a go..but I've heard it all before. Please just help me now to control it and don't judge my stupid past".

 

[azure]

No, of course not

Diabetes is hard work on a daily basis, and I doubt there's any Type 1s who never feel irritated with the whole nuisance of it.

Your DSN doesn't sound very supportive. Could you see another one?

What don't you get about carb counting? Is it the whole idea or things like finding out carb values? Once you get the carb counting right - and I'm sure you will - then your levels should be smoother and control better.

Please don't be afraid of asking any questions you want. There are no 'stupid questions'. Ask away

 

[tim2000s]

Most of us have had times when we've not been A1 top of the class diabetics. It happens. We then have to relearn what we're doing and work out how to live with it. You'd hope that HCPs would help with that. Unfortunately many don't as they don't understand what it is like to live with T1. You have to learn to shrug your shoulders and complain about them. On here is a good place to start, but it should be fed back to the clinic where you were seen.

My personal favoured approach with judgemental health care professionals is to be nasty to them. When they are being judgemental about your struggles, ask them when was the last time they had to act as their pancreas? Ask them to put themselves in your shoes and imagine being told off for trying. It's surprising how quickly the attitudes change.

Good luck!

 

[Auckland Canary]

I think you'll find we have all been there at some point. I was pretty bad for nearly ten years or so and only took marginal interest in my body. I had a few "eye opening" events though and gradually turned my course around about 3 years ago. I now try and be as proactive as possible.

 

[SamFergusson]

Thank you @LucyM88 I'm pleased to hear I'm not the only one.
I am also very pleased to hear you've taken control of yours!

@azure I think you're right, I will see if there is another nurse I could see. But I will need to be open from the start get the help I need.
With regards to the carb counting, I fail miserably as soon as it's more complicated than food with clear carbs on the packet! If I eat out it all goes out the window & don't know a thing.

Thanks, you have both been very kind & very helpful

 

[izzyj09]

I posted the other day in complete madness that I couldn't control it either !! I didn't do so well last semester and I am really trying to do better this semester and it's not going so well so in an answer to your question your definitely not the only one.
I didn't control it very well in my late teens and I tried to talk to my doctor about it and they didn't give me a chance to explain and were also very judgmental. Now I've been moved to an adult clinic rather than teens and I managed to explain everything and not feel so judged. It does get better I promised and don't listen to people who judge you, I always got told what I couldn't do and actually it turned out that they were wrong !
What don't you understand about carb counting, I've counted since I was 12 and I'm know 20 so I can help you. Feel free to message me !!

 

[Charles Robin]

Hi Sam, I see a lot of parallels here. I'm also 28, type 1, and destroyed my diabetes control in my teenage years. I've posted my story on my blog on this site, where I went wrong, and how I've got back on the right track. Feel free to have a look, and good luck with your control.

 

[BeccyB]

Absolutely not! Just a brief look through the forum will show you just how many of us struggle. It's terrible that your nurse made you feel that way.

Have you done a DAFNE course? That's a good place to start with carb counting. Or there is this which is in the 'Useful Tools and Links for T1Ds' at the top of the Type 1 forum ... To learn about Carb counting and Insulin to Carb ratios, the Bournemouth Diabetes and Endocrine Centre has the following e-learning course: http://www.bdec-e-learning.com/

Once you understand the basic concept there are some apps that can help too - many of the ones designed for calorie counting will also count carbs for you.

As azure said, ask away and you're sure to find someone on here who will help

 

[izzyj09]

Also when I first started as a newbie, I used this book called carb counter, it's got a bikini on the front page. It's amazing it has so many different types of food in it ! Right with the carbs it sounds to me like you need to go back to basics and start weighing things. This is a faf to begin with but believe me in a month or so you will know how much pasta you normally eat !

 

[LucyM88]

Remember to be honest with yourself as well. I sat with my nurse for 10mins crying my eyes out and admitted I couldn't control mine. I will have to deal with the consequences later...which is what you will have to do. It will come back and bite you in the ****. But don't let that destroy your determination. You can prevent complications from worsening and even reverse them!

 

[SamFergusson]

Wow, a huge thanks to you all. I'm a little overwhelmed at how many people have the same issues. I'm also really inspired by who many of you have turned it all around.
I really appreciate your support & advise.
@BeccyB I will check out the link when I get home, thanks x

 

[azure]

Thank you @LucyM88 I'm pleased to hear I'm not the only one.
I am also very pleased to hear you've taken control of yours!

@azure I think you're right, I will see if there is another nurse I could see. But I will need to be open from the start get the help I need.
With regards to the carb counting, I fail miserably as soon as it's more complicated than food with clear carbs on the packet! If I eat out it all goes out the window & don't know a thing.

Thanks, you have both been very kind & very helpful

When I was diagnosed, I was given a really helpful little booklet that had carb values of everyday foods in - things like flour, various cereals, pasta, chips, potatoes, apples. I pretty much memorised it : D It was a simple, cheap little thing but did the job really well. It had measures in tablespoons or whatever, and meant that carb counting was quick and easy. I also got tips from a dietician about how to estimate carbs by eye.

Yes, eating out is harder because you're never exactly sure about carbs. But my 'eyeball' method means I can have a pretty accurate guess at things like potatoes, chips, rice, etc. The only one I'm wary about is pasta. I find pasta out has much bigger portions than I'd have at home and less sauce, so it's harder to 'eyeball'.

For things like rice, I look at it and compare it in my head to what I'd have at home, and then I'm ok. When out, I err on the side of caution because I dont want to go too low. I then test after eating and have a bit extra insulin as a correction if necessary. Practice makes perfect - or closer to perfect, at least

Some chain restaurants actually have carb info on their websites, and I've found that really useful. Even many coffee shop chains have it now, so bolusing for that yummy Belgian Choc Brownie is now a lot easier : D

Seriously, it sounds like you're doing pretty good with the carb counting I've found that I know now by heart how much insulin to have for the normal meals I eat at home (I find most people tend to eat the same 10, 20 or whatever meals). I just tested two hours after to see how my blood sugar was, and if it was too high I'd have a fraction more insulin next time until I'd got to the right dose for me for that meal.

My HbA1C is good, but please don't think that's because I love diabetes - I hate it with a passion. But having good control and working to have that on a daily basis means I have taken back control of my life from it. That's how I feel, at least.

My DSN is now fantastic, but I've had unhelpful ones in the past. See if you can find one you get on with so that you're a team and you get the support you need. It can make all the difference.

And forget the past - look to the future

 

[Maidz]

Hi Sam
I'm 27 and had type 1 for 18 years. It's wonderful having diabetes isn't it!! Not!
I have been the same as u. Rebelled growing up and now I need to get my act together. Please feel free to chat to me anytime. Ur not alone, even tho it feels like that sometimes x

 

[Jaylee]

Nope.

Once upon a time.....

 

[mattpiano]

None of us are perfect, and we all have battles with our Diabetes at different times.

I was diagnosed at 10 and I've lived with it for 27 years now. I've had my ups and downs over the years, and some major trauma. Where I am now, I live by the following:

• Don't expect yourself to be perfect all the time. It just isn't possible. Insulin doses, food intake, and activity levels we can control, but there are many other things that can affect our control, including illness, stress, grief, the weather etc.
• As easy and natural as it is to hate the Diabetes, embrace it. Pay it attention, feed its needs and meet its demands in the best way possible. Fighting it and treating it like the enemy only leads to frustration and damage.
• Monitor, monitor, monitor. If you don't know where your blood sugars are, you can't even being to control them.
• Keep a monitoring diary. Dealing with this one test at a time might give some good control, but it won't give the full picture. Having the information in front of you enables you to see patterns and adjust doses with more to go on.
• Get to grips with carbohydrate counting. When I was first diagnosed it was the bible. Then they threw it out for a few years. Now the focus is back on it and guess what? It is the only thing that works. If you find elements of this difficult, ask for help. You are entitled to see a dietician and/or Diabetes specialist who can support and educate you.
• Learn about different food types, and particularly which foods have a high Glycaemic Index, and which foods are low GI. Focusing as much as possible on the latter will bring better control with more consistent and predictable levels.
• Be honest with yourself, and don't be afraid to ask for help. We all need it sometimes and we are all entitled to support in dealing with this burden we have been forced to carry.

 

[SamFergusson]

Thank you all so much.
All the information & advise you have given is greatly appreciated.
@Maidz thank you for the offer of a chat, I may take you up on that & the offer is returned to you also

 

[himtoo]

Hey @SamFergusson
sorry I'm a bit late but a warm welcome to the forum from me as well

as others have said we've all been there with struggling with the D , but deffo the best thing to do is concentrate on the here and now.
try your best to just take things 1 day at a time and count all the things you get right - don't beat yourself up about things that don't.

i use a little pocket book called collins gem carb counter - link here http://www.amazon.co.uk/Carb-Counte...=1455697305&sr=8-1&keywords=collins+gem+carbs
there is also a free app link there as well

and keep posting on the forum too !! we all need to stick together

 

[SamFergusson]

Thanks so much @himtoo
I will definitely be a regular in the forums now. I've found some really helpful tips & people already!

 

[Notorious]

If you have a smartphone, get the app 'Carbs and Cals'. Really helpful for carb counting, it has pictures, so very easy to choose one similar to the size of the portion you're eating while out.