Years of being diabetic and still struggling!

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CR93

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Type 1
I was diagnosed with diabetes type one at the age of 6 - i am now 18. Throughout the years i have always struggled with diabetes despite the many efforts of my care team, family and various types of medication. 2 years ago i was fitted with an Animas 2020 insulin pump and even though my levels have come down, they are still reasonably high. I think one of the main issues is that i dont take diabetes 'seriously' enough.

Ive tried many ways to try and encourage myself to take medication, exercise on a daily basis and eat the correct foods, yet i never seem able to stick to anything. I've joined this forum in the hope that people can share ideas with me that have worked for themselves and others as i don't know anyone my age in my area where i live who is diabetic to talk to.

I would be grateful if anyone could help as i'm tired of diabetes controlling my life as much as it is now, when i should be controlling diabetes!

Thank you, CR93.
 
Hi Cr93 and welcome to the forum. I am sorry that you have struggled so much with your diabetes.

However, as they say the first step in solving a problem is to admit the problem and you have done that.

I am sure that the pumpers will be along shortly to ask questions and give hints.

In terms of motivation some people will use the possible complications of bad control as an incentive to do their best to improve control. Others will use a list of things they wish to see as an incentive. eg having children and seeing them grow up (not sure whether you feel a bit young for that one just yet).

Do you carb count. I have heard you have to learn to go on a pump, but given your age when you started pumping it may be something that has been left to your Mum and Dad. If it is the latter then its something you could learn

http://www.bdec-e-learning.com/
 
margie said:
Hi Cr93 and welcome to the forum. I am sorry that you have struggled so much with your diabetes.

However, as they say the first step in solving a problem is to admit the problem and you have done that.

I am sure that the pumpers will be along shortly to ask questions and give hints.

In terms of motivation some people will use the possible complications of bad control as an incentive to do their best to improve control. Others will use a list of things they wish to see as an incentive. eg having children and seeing them grow up (not sure whether you feel a bit young for that one just yet).

Do you carb count. I have heard you have to learn to go on a pump, but given your age when you started pumping it may be something that has been left to your Mum and Dad. If it is the latter then its something you could learn

http://www.bdec-e-learning.com/
Click to expand...

Hi Margie.
When it comes to my diabetes i am very independant in that way that i do all my medication myself and have done since the day i was diagnosed - obviously my parents watched over my when i was younger. That is obviously a lot harder to do as i am here, there and everywhere now!

I do carb count but was only introduced to it a few month ago. I find it hard to accuratly carb count as i generally tend to snack, rather than eat meals due to working a lot. This then obviously leads to high sugars and the struggle to attempt to gain control again.

I watch programmes on the complications of diabetes every now and then, yet it doesnt seem to 'bother' me as i have the attitude of 'i will deal with it when it happens' which i know in this curcumstance is completely the wrong attitude to have!!

CR93
 
Hi CR93, welcome to the forum 🙂 It must be hard for anyone growing up with diabetes, with so many changes happening all the time. Do you know anyone else with Type 1 that you can share things with? It can be a great help just being able to chat about diabetes knowing that people don't need explanations - hopefully you will find that here and it will help motivate you to managing your diabetes better 🙂

I find that regular exercise is te best thing I can do to help stabilise my levels. I quickly see the difference if I have a 'lazy' couple of weeks as my levels rise as do my insulin requirements. So if you can find an activity that you like to participate in often then this can really help.

Do you have problems at any particular times of the day? It could be that you need to spend some time fine-tuning the basals on your pump - we've got lots of people here who can help you if that is the case. What is your diety like generally? Do you eat what you want and just take insulin with it, or are you careful to monitor your carb intake? Many people find that, even with a pump, it is a good idea to keep carb consumption at a low to medium level as this makes it easier to get tighter control.

Please feel free to ask any questions - everyone is very friendly and happy to help! 🙂
 
CR93 said:
I do carb count but was only introduced to it a few month ago. I find it hard to accuratly carb count as i generally tend to snack, rather than eat meals due to working a lot. This then obviously leads to high sugars and the struggle to attempt to gain control again.

I watch programmes on the complications of diabetes every now and then, yet it doesnt seem to 'bother' me as i have the attitude of 'i will deal with it when it happens' which i know in this curcumstance is completely the wrong attitude to have!!

CR93
Click to expand...

I am sure one of the pumpers will correct me if this is wrong, but I was on a carb counting course where they said that people who pump have to cover all carbs whether they be from a snack or a meal.

Maybe you need to look for alternate snacks and see if that will help.

I suspect that some one will come along and suggest you check your basal rates as if you get that right - you would find less need to snack.

Another idea - have you thought about speaking with a counsellor - some clinics advertise people who deal with diabetes related things and they may be able to find what motivates you, and help you come up with a plan.
 
Northerner said:
Hi CR93, welcome to the forum 🙂 It must be hard for anyone growing up with diabetes, with so many changes happening all the time. Do you know anyone else with Type 1 that you can share things with? It can be a great help just being able to chat about diabetes knowing that people don't need explanations - hopefully you will find that here and it will help motivate you to managing your diabetes better 🙂

I find that regular exercise is te best thing I can do to help stabilise my levels. I quickly see the difference if I have a 'lazy' couple of weeks as my levels rise as do my insulin requirements. So if you can find an activity that you like to participate in often then this can really help.

Do you have problems at any particular times of the day? It could be that you need to spend some time fine-tuning the basals on your pump - we've got lots of people here who can help you if that is the case. What is your diety like generally? Do you eat what you want and just take insulin with it, or are you careful to monitor your carb intake? Many people find that, even with a pump, it is a good idea to keep carb consumption at a low to medium level as this makes it easier to get tighter control.

Please feel free to ask any questions - everyone is very friendly and happy to help! 🙂
Click to expand...

Hello!
I dont really talk to anyone about it, not because i dont want to i just dont have anyone locally to talk to. It was hard growing up and dealing with the issues that come with it, but thats life for you and you get nowhere if you complain!

I used to swim a lot when i was little but gave it up when i did all my exams at school due to lack of time. I have little spare time at the moment due to work but i am feeling that exercise is a must for my health so i am joining the local gym (once again) in the hope that i will start using it!

What medication do you use yourself?
 
margie said:
I am sure one of the pumpers will correct me if this is wrong, but I was on a carb counting course where they said that people who pump have to cover all carbs whether they be from a snack or a meal.

Maybe you need to look for alternate snacks and see if that will help.

I suspect that some one will come along and suggest you check your basal rates as if you get that right - you would find less need to snack.

Another idea - have you thought about speaking with a counsellor - some clinics advertise people who deal with diabetes related things and they may be able to find what motivates you, and help you come up with a plan.
Click to expand...

I do try and carb count with everything i eat and my usual excuse for not doing it is that i didnt have time..which isnt really an excuse at all!

I've monitored my basals on so many occasions and i struggle to get the perfect rate, my bloods go from one extreme to another..which then leads me to constantly battling to regain control!

CR93
 
Hi cr 93 I have also been big D since a kid & nowon a pump fpr a few years. I am oppisite to you & i dont snack. I have never had good control & allways been up & down (everyones different). A "very good" friend of mine was T1 & we used to talk about probs etc. (a realy good thing to do). Have you tried Diabetes uk web site to see a local group, you will find some nice folk. Good luck 🙂
 
CR93 said:
Hello!
I dont really talk to anyone about it, not because i dont want to i just dont have anyone locally to talk to. It was hard growing up and dealing with the issues that come with it, but thats life for you and you get nowhere if you complain!

I used to swim a lot when i was little but gave it up when i did all my exams at school due to lack of time. I have little spare time at the moment due to work but i am feeling that exercise is a must for my health so i am joining the local gym (once again) in the hope that i will start using it!

What medication do you use yourself?
Click to expand...

I'm on lantus and novorapid. I'm a bit weird in that my lantus requirements are very low, and they change drastically according to the amount of exercise I am doing (I'm a runner). For example, when I was injured a few months ago I needed 11 units, but as I am currently training for a half marathon I have had to reduce it to 2 units! My novorapid also reduces, but not to the same degree.

For many years when I worked in an office I used to run home from work - this meant I got some good exercise in, and I also got home faster than anyone on a bus, train, car or bicycle! It was time I would have spent getting home anyway, so fitted in very well to a busy day 🙂
 
Hiya CR93

I know you are far from being newly diagnosed but here's a suggestion.

There's a book called Type 1 diabetes in Children, Adolescents and Young Adults by a geezer (doctor LOL) called Ragnar Hanas. Young Northerner read it when he was 50+ and learned a lot ...... you may find it explains stuff.

And I also recommend the BDEC online carb-counting course, if you can't get on a 'live' one from your local hospital - but my understanding was that generally, Yorks and Lancs are pretty good at giving diabetic education - so get yer name down for it pdq.

And are you on friendly terms with your DSN, and if not why not, and what help is he/she giving you to crack it? - and by help I don't mean 15 minutes in clinic once or twice a year. I mean 1 to 1 HELP and encouragement!
 
Hi CR,
welcome to the forum. 🙂
To gain control take one day at a time have a bad day then forget it there's always tomorrow.

As to carb counting. Have you seen the carbs and cals book? http://www.carbsandcals.com/Book.aspx

There's also a fab book called pumping insulin by John walsh to be found on amazon. It's the pumpers Bible and worth it's weight in gold.
I do carb count but was only introduced to it a few month ago. I find it hard to accuratly carb count as i generally tend to snack, rather than eat meals due to working a lot. This then obviously leads to high sugars and the struggle to attempt to gain control again.
Click to expand...

If you are grazing a lot then use extended boluses to help you out 🙂 Simple way of knowing what you are eating is to sort it out before you go to work and pack individually and label the carb values. A set of scales are a good investment.

The easiest way to sort things out though is for a few weeks at least is to stop grazing and have a set amount of carbs for each meal, then you can sort your basals out and then move on to the next stage of mastering your pump and diabetes.

Nothing is perfect so you will never have spot on numbers every day but at least it gives you a good grounding so you are in control and not your diabetes controling you.
Has basal testing been explained to you?
 
Welcome to the forum CR, sorry to hear you are struggling with things at the moment. Hopefully the fellow pumpers on the forum will be able to provide some tips for you 🙂
 
HOBIE said:
Hi cr 93 I have also been big D since a kid & nowon a pump fpr a few years. I am oppisite to you & i dont snack. I have never had good control & allways been up & down (everyones different). A "very good" friend of mine was T1 & we used to talk about probs etc. (a realy good thing to do). Have you tried Diabetes uk web site to see a local group, you will find some nice folk. Good luck 🙂
Click to expand...

Hiya, no i havent tried anything else..this is the first forum i've joined (seems weird considering ive been diabetic for 12 years now! But i will give it a try and try to find people locally that are in the same position as me!
 
Pumper_Sue said:
Hi CR,
welcome to the forum. 🙂
To gain control take one day at a time have a bad day then forget it there's always tomorrow.

As to carb counting. Have you seen the carbs and cals book? http://www.carbsandcals.com/Book.aspx

There's also a fab book called pumping insulin by John walsh to be found on amazon. It's the pumpers Bible and worth it's weight in gold.


If you are grazing a lot then use extended boluses to help you out 🙂 Simple way of knowing what you are eating is to sort it out before you go to work and pack individually and label the carb values. A set of scales are a good investment.

The easiest way to sort things out though is for a few weeks at least is to stop grazing and have a set amount of carbs for each meal, then you can sort your basals out and then move on to the next stage of mastering your pump and diabetes.

Nothing is perfect so you will never have spot on numbers every day but at least it gives you a good grounding so you are in control and not your diabetes controling you.
Has basal testing been explained to you?
Click to expand...

Hi Sue.
Will have a look at those books now and get them ordered! Yeah my care team have advised keeping a food and insulin diary for a few weeks and then look back to see where my basel rates can be changed for more stable bloods and if there are certain points in the day that my boluses could be changed as well.
 
teapot8910 said:
Welcome to the forum CR, sorry to hear you are struggling with things at the moment. Hopefully the fellow pumpers on the forum will be able to provide some tips for you 🙂
Click to expand...

Thanks. Yeah i hope so, everything thats been said so far has been helpful..cant believe i didnt join this forum earlier!
 
CR93 said:
Hi Sue.
Will have a look at those books now and get them ordered! Yeah my care team have advised keeping a food and insulin diary for a few weeks and then look back to see where my basel rates can be changed for more stable bloods and if there are certain points in the day that my boluses could be changed as well.
Click to expand...

Hi CR Here's a link for basal testing to help you get started http://www.diatribe.us/issues/13/learning-curve.php

It is a must that you sort your basal 1st though before any other adjustments are made. Basals wrong and all else is wrong. The only thing that is really recommended for basal testing is sugar free jelly.
Not sure what you do for a living, but your employer has to make reasonable adjustment for you to eat a meal and look after your diabetes as in blood testing when required.

Carb ratios can differ at different times of the day as well but that can be sorted once basal done 🙂 Be warned though it wont happen over night so be prepared for some sleepless nights and frustration to start with. :( The end result is well worth it though :D

If you want to post your basal amounts and test rests at a later date I'm sure some of the pumpers will be able to make suggestions as to how and when changes need to be considered.
Do not hesitate to ask any questions you want or need to ask as the pumpers knowledge on this forum is 2nd to none.
 
Another hello CR93

All the best with your new-found push to improve your control. As Sue as suggested, it won't happen overnight and there will be tough times where it seems a very steep hill to climb, but it is well worth persevering.

Don't forget you are in this for the long haul and even small improvements can reap big rewards. 'It's a marathon not a sprint' is a corny cliche, but it's absolutely bang-on in this case.

Don't forget too that the D-gremlins delight in messing with your head. Spend the time getting your basal sorted as well as you can, but don't be surprised if you need to tweak things a few months down the line.

Few things in life ever stand still and that's doubly true of D
 
Hi CR93

I was diagnosed at 9 and still struggle a lot of the time especially with carb counting. The carbs and cals book that's been mentioned already, is a really good book as it's easy to understand. Also don't know what the one in your area is like but I recently did a carb counting course & found the group atmosphere to be great motivation. Hope things start looking up for you soon.
 
I have started referring the the book 'Carbs & Cals' and it has become like a bible to me. My bloods are so much more stable already, and even though they aren't as low as i would like, they are not rocketing through the figures as easily as they were before.

Its been a good form of motivation and i feel i am FINALLY getting on top of it all. Just want to say a big thank you to everyones input and support and hopefully things are only going to get better from here!

CR93
 
Welcome from me....................

Do you still have the pump?

Do you get support with it...............?
 
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