Type 1 Diabetes is killing me

[azure]

You mention having a routine - that will definitely help. Sometimes a routine can not only get you organised, but can help with depression too as it gives you something to focus on and helps break the day up.

Don't be afraid of insulin. If you use it properly and eat ok, you won't get overweight.

I think only you can say what would motivate you, but for me looking at diabetes as a nasty thing that I had to carry around with me but I wasn't going to let rule my life helped a lot. Now I know some people think ignoring it is 'not letting it rule your life' but it's not. That way diabetes wins. You have to take control - get your sugars better - and then you're winning against the diabetes.

Make a gentle start and pick a meal that you're going to try to perfect and get your sugars right after. I also suggest you get some good kit - a gentle adjustable finger pricker and a meter that suits you.

 

[ButtterflyLady]

I know insulin can make you put weight on because my weight fluctuates a lot but that's from my diabetes being so uncontrolled! well I eat none stop so that won't help

If I've got this right, high BGs and using too much insulin can make you hungry?

I think getting a daily routine will help a lot. You could base your day around 3 meals (and some snacks if you want them). You could also go for a short walk after lunch, the fresh air might help, and the exercise will help with BG levels too. Maybe we could help you get started, by adding up the carbs in each meal for you? What sorts of things do you like eating?

 

[indiaemily]

I do need a routine even if it's just a basic one, that's all I see it as, a real negative "thing" that I can't get rid off! I want to take control of my diabetes because I'm under its thumb at the moment I've been given books on carb counting, I have apps and I read labels I just don't like the effort I have to put in to it and that's my downfall! honestly, I just eat **** all the time so I don't help myself at all really

 

[ButtterflyLady]

I do need a routine even if it's just a basic one, that's all I see it as, a real negative "thing" that I can't get rid off! I want to take control of my diabetes because I'm under its thumb at the moment I've been given books on carb counting, I have apps and I read labels I just don't like the effort I have to put in to it and that's my downfall! honestly, I just eat **** all the time so I don't help myself at all really

I can totally understand where you're coming from. When I am depressed, the smallest task seems overwhelming.

I'm speculating here, but what if the amount of effort you would have to put it in is about 10 minutes once a day to plan your routine, and about 5 minutes before meals for testing, calculating and injecting? That's 25 minutes, and you would mostly be free to not think about T1 for the rest of the day (unless you had to deal with symptoms of hypo or something else and take action there). Even if it's an hour, it's still a small part of the day. You could plan things for in between the meals, things you enjoy doing. What hobbies and interests do you have?

 

[donnellysdogs]

Without giving full name and address...just your County.. What County do you live in?

Some hospitals offer a buddy system. Some diabetics on this forum meet up.. Its just to see if there is any other way we can help.

We don't need full name or address or anything like that just the County you live in?

 

[azure]

I do need a routine even if it's just a basic one, that's all I see it as, a real negative "thing" that I can't get rid off! I want to take control of my diabetes because I'm under its thumb at the moment I've been given books on carb counting, I have apps and I read labels I just don't like the effort I have to put in to it and that's my downfall! honestly, I just eat **** all the time so I don't help myself at all really

Well, that's true in that you can't be rid of it at the moment, but there will be a cure one day. There have been some great advances in the last few years. And when there's a cure, you want to be as healthy as possible so you can receive it.

Once you get things sorted, there isn't much effort at all. For example, if you were to have the same breakfast every day you would know how much carbs it had and how much insulin to use. Same with lunch - eat a sandwich each day and the carbs will be around the same. If you buy a sandwich, then the carbs will be on the pack.

Most people tend to have the same few evening meals over and over so you'll soon learn the carbs for those. For example, when I have pasta, I don't have to count the carbs every time. I just weigh the cooked pasta and have the same weight each time. That way I know what the carbs are. Yes, you need to add any sauce, but, again, you'll find you tend to have the same few sauces.

You say you can't get help for depression until you get a grip on the diabetes? If you're really down, perhaps you could try to change your doctor's mind about that.

 

[AmandaD]

Try and start with one part of the day at a time. break it up into stages. Like try and take your insulin in the morning and get used to that then add in lunchtime get used to that then add in dinner time and evening. Ask one of your family to help with the carbs so you don't feel overwhelmed with trying to count them and work out ratios and stuff. Baby steps are what you need right now. I'm type 1 almost 30 years now and still have bad days and months. I think I'd change docs too and try and get help with your depression, if you were feeling better in yourself you might be more inclined to try and sort your diabetes out. Really hope you find your feet soon x

 

[Scardoc]

I do need a routine even if it's just a basic one, that's all I see it as, a real negative "thing" that I can't get rid off! I want to take control of my diabetes because I'm under its thumb at the moment I've been given books on carb counting, I have apps and I read labels I just don't like the effort I have to put in to it and that's my downfall! honestly, I just eat **** all the time so I don't help myself at all really

@indiaemily - I've read through this thread and you have my full sympathy. Let me tell you that from my perspective as a parent, and from someone who has long since passed the age of 21, you are still a child. Yes, you work and pay taxes, can vote and do all of the other things that adults can do. Murder someone and you will go to an adult jail! However, no one stops being a child at 16 or 18, it's not old enough to gain an adult level of experience.

So, to have had to deal with this from 11 years old is horrendous and you should have been massively dependent on other people. Now, you have reached the point where you want to, and understand that you need to take control. I will give you three bits of advice so as not to ramble on forever:

1. Keep communicating! On this forum, with your friends and family. A problem shared is genuinely a problem halved.
2. Believe. This forum is full of people just like you. And they manage their condition. They don't find it easy and some have come from awful starting positions to achieve great success. You can do the same.
3. You work in a hospital so:
3a - look at what you must see in there. So many people have worse conditions that orevent them from ever leading a normal life. Diabetes is sh*t, proper sh*t, but you can live with it.
3b - go and see someone in the hospital and ask for help! You work there so I guarantee you will get that bit extra special treatment. Use them!

You can get control and turn things around and thinking of my kids, it would break my heart to have to watch them grow up as T1. Your are 21, you have such a long life ahead of you and you want to be able to enjoy it to the max so believe you will turn it around and use this forum to help you do that.

 

[TooMuchGlucose]

A change of job might help, when I had my depression a change of scene really helped me to beat it. In your job you see people with diabetes related complications, this will obviously get you down with a feeling of what's the point. You should also try to find someone to see who also has type 1 someone mentioned a buddy system, as this is such a personal disease you really need someone who understands it.

 

[bickmops]

Hi , I have been reading your story and feel so sad your in such a frightening situation ... My son was diagnosed 3 years ago age 11 , the worst and most shocking thing that ever happened , he played high level football and it seemed the world was crushing in ... Every day since has been a battle !! It's hard really hard !! But you have to take things slowly , one hour at a time , never think it's hopeless and even as a mother I feel sometimes it's impossible !! But every day when effort is put in the results get better , his levels are like a yo yo !!! Get help for the depression ( demand it ) go from there , your body needs the long acting insulin , you must take it , try it for short periods , like 1 week of doing what you should and see how you feel .... Starting secondary school and dealing with a type 1 diagnosis gives you no time for acceptance !! .... But please start here ... Your so young don't let this beat you !! One step at a time , eat what you want there are no limits , but take insulin and as far as weight gain goes , as you feel better your energy levels will increase and you can exercise , tell your family your ready for help and don't be down on yourself x x

 

[Charles Robin]

Hi Emily, I read your post about the problems you are having. First of all, on behalf of your diabetes I would like to say sorry for everything it is putting you through. Like me, you didn't ask for type 1, and you sure as hell didn't want it. But I don't want to be like your counsellors and just tell you what you want to hear. You already know that you need to make changes. I will freely admit that my advice is going to be hard to follow. I know this, because I had to learn to follow it myself. Just like you, my diabetes was hacking away at me. It was destroying my body, my happiness, and even my marriage. But I am so, so much happier now that I have taken back control. I have documented my journey so far on my blog. It does take commitment and hard work to get back in the driver's seat. Have a read of my blog on this forum, which you should be able to get to from my profile. It's quite a few posts long, so it might take you a while to get through! If you're interested in what I have posted, feel free to message me with any questions. It's a long road, but such a worthwhile one. You're knocked down right now but I promise you that there are ways back, if you're willing to look for them. My heart goes out to you, but remember that on this forum you are among friends. All of us came here lost and scared to begin with.

 

[Flowerpot]

Hi Emily

Great advice on here. From experience I know what a huge determination it takes to start to take small steps in the right direction to control diabetes and not to be put off trying when things don't go to plan.

I neglected my diabetes through my 20's-pre internet sadly- else I'm sure I would have asked for help sooner and realised I wasn't the only one not managing well with it. I was completely exhausted all the time, I hated diabetes, I managed to keep my job somehow in between sleeping and was going round in circles not knowing where to start to make things better. It wasn't that I didn't know what I needed to do but I was completely unable to break out of a cycle of limiting injections, not wanting to test as I knew the results would be dire, terrified of putting weight on and just generally hacked off with the whole thing. My saving grace was an eating disorders clinic where I was treated for anorexia now called diabulimia when linked with diabetes..

Starting a routine is vital, just testing and recording readings even though they won't be in range.gets you into the habit of testing, working out a correction dose to bring your levels down, setting aside time to have a proper meal after work with the right insulin bolus. Any improvement is a step in the right direction. It's a hard slog but repetition pays off and gradually with the better energy I got from lower levels I found things more stable and the biggest surprise was that I liked caring and liked getting good results. Living with constantly high levels, apart from the obvious risks to long term health made me feel so ill and exhausted it wasn't until I started to gradually bring my levels down that I began to feel me again and that was the best feeling.

Ask for help from your diabetes team, tell them exactly what you're doing, they have heard it all before and will help you to try and sort things out. They would much rather help you now than patch you up later in life. It's not a failing to struggle with a lifelong chronic disease that is one big challenge and we can't do it without help and support.

There is a way to feel better, I never believed I could care as much as I do about my control. Don't despair and ask for help from your Diabetes team, other specialists and us lot on here who get exactly what you're going through. I wish you well.

 

[dylt1]

Hi Emily,

I'm a 23 year old diabetic type 1. From what I've read you are looking for someone to speak to, I was sad and down when I found out I was diabetic but then I've made the most of a bad situation, I am so much healthier and fitter since diagnosis and because of this I'm much happier! I am here for you to speak to if you want, drop me a message and I hope I can help!

 

[indiaemily]

I'm sorry for being so ignorant but I'm in self destruct mode my ketones are 6.2 and I'm not taking an novo to bring it down, I've just hit rock bottom

 

[TooMuchGlucose]

I'm sorry for being so ignorant but I'm in self destruct mode my ketones are 6.2 and I'm not taking an novo to bring it down, I've just hit rock bottom

Okay, it's good that you checked but you really need to go to hospital you could collapse and end up in coma.

 

[donnellysdogs]

You are getting to the point now of serious illness. Please take some novorapid.
We will help you pick yourself up from this seemingly bottomles pit that you are sliding into.
We need you to inject some nova....please .

 

[Jellybaby98]

So I have been diabetic for almost 10 years (I'm now 21). I have never accepted it and still really struggle to come to terms with it all. My blood sugars are almost always 30+ or reading "HI" on my machine, I always have ketones, horrendous kidney pain, and all the symptoms of hyperglycaemia. I've now being diagnosed with depression and I am using my diabetes to make myself really unwell and I feel completely alone in this because I don't know another diabetic so people really don't understand.

We all feel like giving up sometimes, diabetes is **** but you have to think that well if you dont inject you are probably going to die. And very painfully with diabetes complications.
Have you tried a pump? I've heard they are very good for getting people in control

 

[donnellysdogs]

Indiaemily
I have had a friend desperately at rock bottom in an eating disorder unit for 6 months. She is now out and recovering.
You can do the same with your diabetes. She had been killing herself since the age of 12. She almost 24 now and she's happy for the first time. Please don't give up. Her fear of food will never go away.. Just like your fear of managing your diabetes. We want to help you but you need to just show us that you can take little steps now before you end up in a coma.

 

[emmalhunter]

So I have been diabetic for almost 10 years (I'm now 21). I have never accepted it and still really struggle to come to terms with it all. My blood sugars are almost always 30+ or reading "HI" on my machine, I always have ketones, horrendous kidney pain, and all the symptoms of hyperglycaemia. I've now being diagnosed with depression and I am using my diabetes to make myself really unwell and I feel completely alone in this because I don't know another diabetic so people really don't understand.

I've only had it under a year and I'm a similar age to you. I work full time and don't want this to take over my life. There's lots of people on here. It doesn't have to take over your life. No one likes injections etc but if you want to survive you must.
Your symptoms would reduce if you used your insulin more then you might have a better mood about everything.
We're all here if you need to talk
Maybe an insulin pump is better for you so you have less injections.. reply back when you can x

 

[shaneleman]

hi
i have been a diabetic for 20 years now i never accepted it at first it is a hard thing to deal with
i have started a carb couting regime as advised by my diabetic nurse and things are looking up i dont know if this will help but there is a lot of people out there just like you
i have a brilliant diabetic nurse who i can ring almost anytime during office hours
there is a lot of help out there if you talk to people
the better your control the better you'll feel in your self
i dont really want to preach to you but i just thought i'd let you know you're not on your own
all the best xxx