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Hard to live with

L

lottieblot

Member
Messages
5
Hi everyone.
I've only just joined this website. I think it will do me some good to be able to talk about my diabetes. My name is Amber, I'm now almost 16 years old and have been diabetic for about 5 years. I live in the South of France. From the day I was diagnosed with typ 1 diabetes, I have been fighting it. I am a stubbourn person (which hs it's good sides) but when it comes to dealing with my health it doesn't help. My doctor, my family and my frinds have all tried to help but somehow it makes things worse. Today I am starting to really see the effects it has on my body (I get sick more often, I get cramps in my body, I'm constantly tired etc..) but also on my mentality. I have lost touch with a lot of people because I'm closed in on myself. To me diabetes is an embarassement. I know no one around me that has diabetes so I feel alone. All this started when my parents were splitting up. For a while I blamed it on them but now I know that blaming it on someone else isn't going to help me get by it. I have a lot of family issues and all the rest of it but I can't use that as an excuse anymore.
I went for a check up last week and things went terribly. My doctor is forcing me to go to this re-adaptation center. She is convinced that I'm deprssed and that I don't know what it feels like to be happy anymore. I hate clinics and I know that it's not going to help me anymore than the rest of it. I don't know what to do anymore. I'm stuck in this viscious circle and everyone is telling me "just do it" but that's easier said then done.
Well even if I'm struggling with this, just writting about it makes me feel a little better. I hope all of you type 1 diabetics out there are coping. & if you are, please give me advice on how to get there. It is my number one wish - get sorted with my diabetes.
Thank you,
Amber x
 
Hi Amber,

First of all; you are not alone. The feelings you have about this are shared by so many people who get diabetes.

When I was diagnosed my doctor said two things to me which sort of lodged in my head and really helped. The first thing was that with diabetes you have a choice; you can control it, or it can control you and the second thing was that as we go through life you must always try your hardest not to make an enemy of your future.

He meant both of those in a supportive way and without threats or dire stories of what may happen. I think that was very useful; we all have been dealt difficult hands with diabetes, if we can calmly say; "it is what it is, I have to deal with it; how do I best do that?" then half the battle is won.

I was the same when I was in my teens about not wanting people to know, but diabetes is a bit like wearing sun glasses on a grey day; you are very conscious of them because they are on the end of your nose, but most people don't notice and don't mind one way or another.

Keep writing about how you feel and keep posting on forums like this as the act of expressing yourself is also part of dealing with the problem.

Lastly; it's not all bad - you are in the South of France, I am in London on this summer's day getting drenched by torrential rain... :o

Best

Dillinger
 
Hi Amber and welcome to the forum :) I'm sorry I can't help you with your depression although I can empathise with you as I also know what it's like, but as you said

It is my number one wish - get sorted with my diabetes.
Click to expand...

I can at least help you with that. What you need is some fresh information to give you a new start to looking after your diabetes. Our friends, Sue and Ken, have written this basic information for new members (even though I know you have had diabetes for 5 years so are not newly diagnosed) which I hope you will find interesting and helpful and give you a new perspective on things even if some of this won't be relevant as you live in France.

Here is the advice that Ken and I, as Forum Monitors, usually give to newly diagnosed Diabetics. We hope that these few ideas gained through experience help you to gain control and give you some understanding of Diabetes. This forum doesn't always follow the recommended dietary advice, you have to work out what works for you as we are all different.

It's not just 'sugars' you need to avoid, diabetes is an inability to process glucose properly. Carbohydrate converts, in the body, to glucose. So it makes sense to reduce the amount of carbohydrate that you eat which includes sugars.

For more information on CARBOHYDRATE see here:

viewtopic.php?f=3&t=20306

This is NOT a low carb diet suggestion, just a reduction in your intake of carbohydrate. You have to decide yourself how much of a reduction will keep your blood glucose levels in control.

The main carbs to avoid OR reduce are the complex or starchy carbohydrates such as bread, potatoes, pasta, rice, starchy root veg and also any flour based products. The starchy carbs all convert 100% to glucose in the body and raise the blood sugar levels significantly.

If you are on Insulin you may find that reducing the carb intake also means that you can reduce your dose of insulin. This can help you to keep weight gain down as Insulin tends to make you put on weight and eventually cause insulin resistance. This should be done slowly so as not to cause hypos.

The way to find out how different foods affect you is to do regular daily testing and keep a food diary for a couple of weeks. If you test just before eating, then two hours after eating, you will see the effect of certain foods on your blood glucose levels. Some foods, which are slow acting carbohydrates, are absorbed more slowly so you may need to test three or even four hours later to see the effect that these have on your blood glucose levels.

Buy yourself a carb counter book (you can get these on-line) and you will be able to work out how much carbs you are eating, when you test, the reading two hours after should be roughly the same as the before eating reading, if it is then that meal was fine, if it isn’t then you need to check what you have eaten and think about reducing the portion size of carbs.

When you are buying products check the total carbohydrate content, this includes the sugar content. Do not just go by the amount of sugar on the packaging as this is misleading to a diabetic.


As for a tester, try asking the nurse/doctor and explain that you want to be proactive in managing your own diabetes and therefore need to test so that you can see just how foods affect your blood sugar levels. Hopefully this will work ! Sometimes they are not keen to give Type 2’s the strips on prescription, (in the UK) but you can but try!!

For TIPS FOR STRIPS see here:

viewtopic.php?f=20&t=19002#p173253

If you are an Insulin user in theory you should have no problem getting test strips.

The latest 2011 NICE guidelines for Bg levels are as follows:
Fasting (waking and before meals).......between 4 - 7 mmol/l...(Type 1 & 2)
2 hrs after meals........................no more than 8.5 mmol/l.....( Type 2)

2hrs after meals......................... no more than 9 mmol/l ......(Type 1)

If you are able to keep the post meal numbers lower, so much the better.

It also helps if you can do at least 30 minutes moderate exercise a day, it can be split into 10 min sessions to start with. It doesn't have to be strenuous.

The above is just general advice and it is recommended that you discuss with your HCP before making any changes. You can also ask questions on the forum on anything that is not clear.

Finally a few QUESTIONS TO ASK AT DIABETES CLINIC.

viewtopic.php?f=20&t=17091



Sue/Ken.
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Hi,

I can relate to being stubborn! (i'm a taurus :lol: ) I agree it does have good sides, but also not so good ones.

I'm sorry your having such a bad time with your diabetes. I can assume that your control isn't as good as it could be. Which in turn is making you feel pretty bad with the syptoms your listing. When i was first diagnosed i was okay with it for a few months, then went off the rails really didnt test, didn't take my insulin, as a result i was in and out of hospital, my hair was falling out, i was constantly feeling poorly, i was deathly thin, i became quite depressed and didn't go out, and shut myself away which seems to be the way your feeling right now.

the last time i was in hospital i was very poorly to the point my poor heart was working twice as fast as it should do because my body was under that much pressue due to mis-treating my diabetes. A lovely lovely nurse came to see me and we talked for a long long time, she asked me what i hate about diabetes, which my reply was 'everything' and she simply said, thats a perfectly acceptable answer. Which took me by surprise, i cant even count how many people had said 'oh its not that bad injecting' 'you HAVE to do it' She asked me if she could work with me to get me to the point where i 'disliked' my diabetes. and that was it, i haven't looked back since, i havent missed an injection and i test everyday and i turn up for every appointment. I now have an insulin pump and my hba1c is getting in target too!

It seemed it took just one person to listen and not lecture. and suddenly i didn't feel alone anymore.

Problem is it's like a downward spiral, you feel stubborn and lonely in your diabetes, which doesn't encourage you to look after it so well, in turn you become poorly and tired so even more so you don't want to look after it and you don't want to go out and it feels like an embarrassment because its such a hassle! so you go round and round and round.

I was diagnosed at 20, not as young as you, but still i think you will be old enough to remember what it was like without diabetes which is definately tough as it does change everything and very much overnight!

You need to break this circle somewhere and i think you already know it has to start with your diabetes.

I think most people feel alone with diabetes, because you have to look after it pretty much 24/7 you can't always hide it away, and it interferes with your life at the most unwanted times!

Do they have DAFNE courses in france? not sure if you've heard of it, and maybe france has an alternative. Its teaches you to carb count with your diabetes and handle it alongside aspects of life like illness, drinking exercise etc. The best part is you go on this course with other people with diabetes. They may do one designed for young adults and teenagers such as yourself as i'm sure it would benefit you to speak to others in the same boat as you!

It's great you've come to the forum, even if you just read a few posts and can see that your definately not the only one and you'll see how lovely everyone is here.

Post as much as you like, moan, shout, ask questions, let it all out here and someone will always make the time to talk things out with you. Some support, and theres even a joke section if you just need a giggle!

Take things one step at a time. set yourself little goals that you can acheive one at a time. Don't set targets that your going to struggle to meet.

I wrote myself a list and it sort of looked like this

1. take ALL insulin doses.
2. test before every meal.
3. test when i wake up and when i go to bed.
4. go to every appointment.
5. keep a diary.
6. Try and keep BG levels under 12
7. try and keep BG levels under 10
8. try keep BG levels under 8
9. Go on the DAFNE course.
10. Get an insulin pump


So one by one i could cross these things off. and eventually i was able to do my entire list daily and without reminding myself.

I think if i would have pushed myself to do this all at once i would have given up and gone back to square one!

I hope some of this helps a little, i know it's alot to read but i really wanted to write so much that at least you may be able to pick something out and use it for yourself to get yourself going!

I hope you get to where you want to be and hang in there lottie :)
 
ebony321 said:
It seemed it took just one person to listen and not lecture. and suddenly i didn't feel alone anymore.
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thank you ebony for your story, that resonates with me. Really sums it up for me. I felt INCREDIBLY alone when I was diagnosed. However much people tried to help, they could all walk away if they wanted to and I couldn't... if I walked away the diabetes still came with me. Being able to tell all this to another diabetic made such a difference. Sometimes it's just about people being able to listen because they know what you are talking about, rather than people trying to fix it.

So yes, come here as often as you need to, Amber, and you are very welcome, and I hope you feel better soon.
 
Hi Amber,
I can't relate to you being a young person with diabetes. I have type 1 but was one of those 'odd' sorts that got it later in life. I do though live in France so perhaps have some inkling about your problems.
I think sometimes the French system is designed to make you feel ill They are very good in that they check for everything and keep on at you. I've had to see a gynaecologist, an opthamologist, a cardiologist and have lots of blood tests in the last few weeks, all of them prescribed by my diabetologue, I feel fine and actually I have't any problems but sometimes you want to say enough is enough,!
You say your doc wants you to go for adaptive education. I'm not sure if it is the same thing but I been for 'therapeutive education' which may (or may not be?) what they're suggesting.

On the one hand it again makes you a 'patient.' Blood pressure checks, nurses waking you to check your levels in the early hours etc but the rest was really useful. First I was with a group of people who lived with T1, Meeting others is probably one of the best benefits as talking with others helps so much. And though the discussions during the day are very useful,, living together even just meeting on the steps of the hospital or even as we did a couple of 'clandestine' trips to a local cafe helps you get to appreciate that you aren't the only one. I shouldn't neglect the official part of the week which also taught a lot about diabetes and about how to use insulin and for many on the course really taught them a lot. Once you learn to make insulin and testing your friend, it makes life so much easier, helping you to live a normal lifestyle.

Even if 'adatatif education' is not specifically for diabetes, ask your doc what it involves. It may be that being able to talk with others could help you..
 
I'd just like to say thank you to all of you for your amazing replies.
I feel a lot better with myself. I think I will keep posting things to get them off my chest.
It really does help :)
 
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