Diagnosed 17 years ago...

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JazzieJamJay

JazzieJamJay

Member
Relationship to Diabetes
Type 1
Hello everyone,

I was diagnosed with Type 1 Diabetes 17 years ago when I was 12 years old.

It was a huge shock to everyone as there is no record/recollection of anyone in the family having diabetes. Obviously I could go into more detail but I imagine there are specific areas for that kind of thing.

I don't control it very well, even after all this time. I have been getting better over the last 6 months or so and I have started taking the seriousness of it on board. As stupid as it sounds I've started realising that this is never going to go away so why am I ignoring it?

I despise it, I'm sure nobody out there even remotely likes it but I feel its taken so much from me. Physical and mental health, opportunities, time...all taken by pure bad luck of having a faulty pancreas. Worse things of course could happen, but this has happened and I'm pretty bitter about it.

I hope by posting and commenting on this forum I can either get some support or even support other. Sometimes I just want to rant on and on because of how simply unfair it all feels. Other times I feel invincible and 'on top of things'

Anyway, I intend on being an active member and throw my tuppence worth in where I feel I can be of some help.

Take care,

J
 
Hi J, this forum is a gret place for help and advise or just to have a moan or rant. Welcome aboard.
 
Hi J, Welcome. I look forward to seeing you around here. We're a friendly bunch and we understand the need to have a bit of a rant.
 
JazzieJamJay said:
Hello everyone,

I was diagnosed with Type 1 Diabetes 17 years ago when I was 12 years old.

It was a huge shock to everyone as there is no record/recollection of anyone in the family having diabetes. Obviously I could go into more detail but I imagine there are specific areas for that kind of thing.

I don't control it very well, even after all this time. I have been getting better over the last 6 months or so and I have started taking the seriousness of it on board. As stupid as it sounds I've started realising that this is never going to go away so why am I ignoring it?

I despise it, I'm sure nobody out there even remotely likes it but I feel its taken so much from me. Physical and mental health, opportunities, time...all taken by pure bad luck of having a faulty pancreas. Worse things of course could happen, but this has happened and I'm pretty bitter about it.

I hope by posting and commenting on this forum I can either get some support or even support other. Sometimes I just want to rant on and on because of how simply unfair it all feels. Other times I feel invincible and 'on top of things'

Anyway, I intend on being an active member and throw my tuppence worth in where I feel I can be of some help.

Take care,

J
Click to expand...

Hi J, welcome to the forum 🙂 Glad you decided to join, hopefully we will be able to help you get things on track so it doesn't have to feel such a burden on your life. What insulin regime are you on, and what are the main difficulties you are having? As you say, you are stuck with it, so the best thing to do is to put it in its place, give it the time and attention it needs, but then get on with your life - don't let it control it! 🙂 I often think of all the energy that is wasted on worrying or being angry about things we can't change - it never helps, only makes things harder, so save that energy for things you do want to do! 🙂 Have you ever been on a diabetes education course, such as DAFNE?
 
Hello J and welcome to the forum.
 
Northerner said:
Hi J, welcome to the forum 🙂 Glad you decided to join, hopefully we will be able to help you get things on track so it doesn't have to feel such a burden on your life. What insulin regime are you on, and what are the main difficulties you are having? As you say, you are stuck with it, so the best thing to do is to put it in its place, give it the time and attention it needs, but then get on with your life - don't let it control it! 🙂 I often think of all the energy that is wasted on worrying or being angry about things we can't change - it never helps, only makes things harder, so save that energy for things you do want to do! 🙂 Have you ever been on a diabetes education course, such as DAFNE?
Click to expand...

Hi, thanks for taking the time to reply 🙂

I take 20u of Lantus in the morning and Novorapid with meals, currently at a ration of 1u per 15g of carbohydrates. Although my dietician feels it needs tweaking as my morning blood glucose levels are sky high!

I feel the advise I get from my DSN and consultants is great, its motivating myself most days to just do it!

It frustrates me so much when things like my glucose levels are not what I expect them to be, I almost wish I could go back to my 12 year old self and say 'Look, this is important! Listen!' I'm guilty of letting my parents do almost everything for me then. They felt really guilty about brushing off my symptoms as 'growing up' for so long that when I was diagnosed they almost took it on as if they'd been diagnosed. I would literally hold out my finger to let them test and let them decide how much insulin was needed, they would draw it up and inject me without me so much as looking up. I wasn't interested in the slightest what my levels were because they did it. It sounds like an excuse, but its just what happened. I feel like I'm learning from page 1.
I have heard of DAFNE but the course is something like 6 weeks of Monday mornings (from memory) And I just cant afford to take that amount of time off work.

Thanks again for your advise, its always helpful to hear encouraging words
 
Do you have the same ratio through the day? A lot of people find that they need different ratios at different times of the day - I'm certainly like that, as I need three times as much insulin in the mornings as in the evenings. How do your waking levels compare to your bedtime readings, is there much of a rise or are they about the same? Have you ever done any basal testing? If you're not sure what that is, it's making sure that your lantus keeps your levels steady when you are not eating - if levels rise then you have too little lantus, if they drop you have too much. If you take your lantus in the mornings and levels are high when you wake, it may not be lasting the full 24 hours, so splitting it or taking it at night might be an option. What sort of adjustments do you make if a meal makes your levels rise higher than expected?

Sorry for all the questions! The key thing is to gain a good solid experience of how things are affecting you so you become better and better at predicting your requirements, or modifying doses to improve things next time around. It's hard work to begin with, but once you become more comfortable with things, it becomes a lot more routine, and much easier to fit into your day without worrying 🙂 It's worth looking at things afresh and starting a food diary so you know exactly where you stand with things. Write down the carbs in everything you eat and drink for a couple of weeks, alongside your insulin doses and blood sugar readings before and one or two hours after eating. A bit of a pain, but really well worth it because it will give you a firm foundations for moving forward. You might find some surprises and almost certainly improve your control if you put your mind to it - and it does sound like that's something you are prepared to do 🙂

I'd also ask your DSN what courses are available in your area - there may be something shorter that you can fit in more easily. I think DAFNE can be taken as a whole week rather than being spread over several weeks, and many people have found that it has transformed the way they manage their diabetes, so it really is worth doing. Remember, nothing is more important than your long-term health, and things can creep up on you before you know it, so much better to act now 🙂

I'd recommend getting a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - whatever your age, it's a brilliant book that covers all aspects of living with Type 1 and probably contains a lot of stuff you weren't even aware of 🙂 It's certainly not unusual that many people who were diagnosed as children aren't kept up to date with the latest information and treatments, as it is often assumed that you 'must know everything' already - in truth, we are all learning every day and the technology and research is improving all the time 🙂
 
Hello and welcome from a T2 who's two years in this month.
 
Northerner said:
Do you have the same ratio through the day? A lot of people find that they need different ratios at different times of the day - I'm certainly like that, as I need three times as much insulin in the mornings as in the evenings. How do your waking levels compare to your bedtime readings, is there much of a rise or are they about the same? Have you ever done any basal testing? If you're not sure what that is, it's making sure that your lantus keeps your levels steady when you are not eating - if levels rise then you have too little lantus, if they drop you have too much. If you take your lantus in the mornings and levels are high when you wake, it may not be lasting the full 24 hours, so splitting it or taking it at night might be an option. What sort of adjustments do you make if a meal makes your levels rise higher than expected?

Sorry for all the questions! The key thing is to gain a good solid experience of how things are affecting you so you become better and better at predicting your requirements, or modifying doses to improve things next time around. It's hard work to begin with, but once you become more comfortable with things, it becomes a lot more routine, and much easier to fit into your day without worrying 🙂 It's worth looking at things afresh and starting a food diary so you know exactly where you stand with things. Write down the carbs in everything you eat and drink for a couple of weeks, alongside your insulin doses and blood sugar readings before and one or two hours after eating. A bit of a pain, but really well worth it because it will give you a firm foundations for moving forward. You might find some surprises and almost certainly improve your control if you put your mind to it - and it does sound like that's something you are prepared to do 🙂

I'd also ask your DSN what courses are available in your area - there may be something shorter that you can fit in more easily. I think DAFNE can be taken as a whole week rather than being spread over several weeks, and many people have found that it has transformed the way they manage their diabetes, so it really is worth doing. Remember, nothing is more important than your long-term health, and things can creep up on you before you know it, so much better to act now 🙂

I'd recommend getting a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - whatever your age, it's a brilliant book that covers all aspects of living with Type 1 and probably contains a lot of stuff you weren't even aware of 🙂 It's certainly not unusual that many people who were diagnosed as children aren't kept up to date with the latest information and treatments, as it is often assumed that you 'must know everything' already - in truth, we are all learning every day and the technology and research is improving all the time 🙂
Click to expand...

I have been on this regime for only the past few months so its all pretty new.

I am keeping a food diary at the moment as I have an appointment with my dietitian on Monday, hopefully I will come away from that with some helpful info.

I have to say you have really made this first experience on the forums a positive one. I'll post in the forum after my appointment on Monday, hopefully you will see it.

Thanks again
 
Hello J and welcome to the forum. 🙂
 
Hiya and welcome aboard 🙂. Hope you find the forum useful 🙂
 
Welcome to the forum JJJ.
I'm sure you'll find lots of useful info on here. It's been a lifeline for me since being diagnosed 8 months ago as I don't know any other T1s. Thanks to this site I feel as if I've got an (albeit potentially temporary!) handle on my levels at the moment.
See you around 🙂
zx
 
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