# Struggle with type 1 diabetes



## TyleranneKirkham (Mar 18, 2013)

I have had diabetes for nearly 2years now and I feel like it has killed my life  I can't get it under control at all I run on hi for days then give myself a burst of insulin just for a boost, I need help badly!


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## Northerner (Mar 18, 2013)

Hi Tyleranne, welcome to the forum  What insulin are you on? Have you ever been on a course to learn how to inject according to what you want to eat? You need to start doing the basics at least, missing injections will make you feel terrible and could be doing you great harm. It's more than likely that you are spending longer feeling bad about not looking after your diabetes than you would spend taking care of the necessaries and then getting on with your life.

Try not to fight it - there is lots of help available, and if you can tell us a bit more about things we may be able to give you some suggestions to help get you back on track


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## TyleranneKirkham (Mar 18, 2013)

I am on novo rapid and levemir, just feel like am getting no where?


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## Northerner (Mar 18, 2013)

TyleranneKirkham said:


> I am on novo rapid and levemir, just feel like am getting no where?



What are your main problems? Do you have problems at particular times of day?


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## TyleranneKirkham (Mar 18, 2013)

All day every day, I suffer from desperation too which doesn't help, when a take insulin I just guess how much to take, life just keeps going down never up am only 19 and am sick of life already and knowing I will have diabetes the rest of my life omg


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## MeganN (Mar 18, 2013)

Hi. 
I'm 25 and get depressed about my diabetes too. I've been on it about 5 months now. 
I would contact your hospital consultant and say that you want to go on a carb counting course so that you aren't guessing your doses. 
Also the carbs and cals book from amazon or iPhone app wih the same name I find amazingly helpful. 
I find it strange that your team have not helped you more. Down here when you go on basal bolus routines the hospital holds a course for you on carb counting and help you out for the next 6 months. This should be done everywhere in my opinion. 

I really would contact your healthcare team and not accept a no. 

I had to fight for help but feel a hell of a lot better after getting it. 

Goods luck x


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## Northerner (Mar 18, 2013)

TyleranneKirkham said:


> All day every day, I suffer from desperation too which doesn't help, when a take insulin I just guess how much to take, life just keeps going down never up am only 19 and am sick of life already and knowing I will have diabetes the rest of my life omg



It doesn't have to be this way. I would suggest getting in touch with your DSN and telling her/him how you are struggling. Have you done a course in carb counting? It's not that difficult and much better than guessing even if you don't get it right every time. Diabetes shouldn't stop you from doing anything you want to do in life, try not to focus on the negatives or get overwhelmed by it all. Start by doing regular tests before and one or two hours after meals. Make a diary of your results and insulin doses you have taken, along with the food you ate, particularly the carbs in it. This way you will quickly build up an idea of whether your doses are too high or too low and be able to make adjustments. Remember, you're not alone in this - if you want to post your results here we will be happy to look at them and make suggestions. Make tomorrow the day you start looking after yourself - you will feel so much better!


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## TyleranneKirkham (Mar 18, 2013)

Am there like every week but feel like am going round in circles they come up with options but never follow it through  I also had a miscarrage not that long ago an I feel like it was my fault coz my really bad control, I just want to get myself sorted! Carb counting a feel really difficult coz a just cant get it in my head x


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## Northerner (Mar 18, 2013)

Might be worth trying some really boring meals for a while where you know exactly how much carbs are in them, and so that you can compare your results day to day. What sort of things do you like to eat?


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## TyleranneKirkham (Mar 18, 2013)

I like McDonalds and a eat that a lot, pizza, pasta, sausage and mash that's my most fav meals


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## HOBIE (Mar 18, 2013)

Good luck sorting everything out. You have done yourself a big favour coming on hear (lots of people who know where you are coming from) . Do you have a diary of what you are doing/eating & times ?  Rome wasnt built in a day


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## TyleranneKirkham (Mar 18, 2013)

I don't really have time for a diary, actually I don't really have time for my diabetes.


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## HOBIE (Mar 18, 2013)

If you had a week of results & what & when you ate, your nurses could help get things sorted better. I dare you to try it & you will be better. I have had 47yrs at it    Good luck


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## Northerner (Mar 18, 2013)

TyleranneKirkham said:


> I don't really have time for a diary, actually I don't really have time for my diabetes.



Nonsense, it only needs to take a few minutes each day - you probably spend more time watching a tv programme you're not really interested in than it would take you to do a few tests and injections. You have to make time fr it, no-one can do it for you.


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## TyleranneKirkham (Mar 18, 2013)

Did you find it difficult when you first got diabetes, how long it take you to get it under control? I was thinking about maybe getting a food substitute if one meal a day so at lease I could get that meal under control but don't know if that is possibil


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## Northerner (Mar 18, 2013)

TyleranneKirkham said:


> Did you find it difficult when you first got diabetes, how long it take you to get it under control? I was thinking about maybe getting a food substitute if one meal a day so at lease I could get that meal under control but don't know if that is possibil



That might be one place to start. You do need to think about ditching the Mcdonalds and pizzas though, at least until you start to get things under control as they can be very difficult to calculate injections for. What do you normally have for breakfast? Start with that - have the same breakfast a few days running and do tests before and one or two hours after, and then before your next meal. Pretty soon you'll have an idea how closely your insulin dose has matched up to what you have eaten - if you are too high, then you need a bit more novorapid, if too low then a bit less. Once you've cracked it you won't need to do as much testing.

Take little steps - it will take time but you will get there!


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## Lauras87 (Mar 18, 2013)

TyleranneKirkham said:


> I don't really have time for a diary, actually I don't really have time for my diabetes.



I'm sorry but you have to, yes diabetes is horrible for young people who've had a "normal" life & have this landed on them. 
It's a few minutes 4 times a day (depending on your background dose possibly 5) to make sure your health is taken care of.
You need to ditch your diet & eat properly by getting used to the basics before fast food is thrown into the mix. I know McDonalds is nice but I have it once a blue moon as it does my blood sugars no good & it's expensive.
I'm sorry if I sound horrible but I was 15 when I was diagnosed so I've been there & bought the t shirt. Thankfully I came out the other side & so can you


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## gabriele (Mar 19, 2013)

TyleranneKirkham said:


> I have had diabetes for nearly 2years now and I feel like it has killed my life  I can't get it under control at all I run on hi for days then give myself a burst of insulin just for a boost, I need help badly!



Hi Tyleranne

so sorry to hear you have so many problems.
But you did the first step , you asked for help . People here give you their opinion and try to point you in the right direction . 
If you want to feel better , and you will you have to do something. You need to see a nurse or a doctor and learn how to work with your tools , Insulin and food .
To give you a little help . Get yourself an accound on  myfitnesspal , you only need a username and password , it is very easy and it is free . On their data you can find even Mac Don. food and the amond of carbs in it . Then you have a little help how much insulin you need.
But this is only a little help to sort you out , most important go on the course and learn how to count carbs .
You can do that and you will feel better , right away !

Best
Gabi


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## Persil (Mar 19, 2013)

Hi Tyleranne!

Sorry to read you're struggling! This forum is a great place, so I hope you find lots of support advice from the people here. I was diagnosed three years ago, at the age of 17, and you're right, it is a struggle, but trust me when I say all that perseverance with logging sugar levels and counting carbs is so worth it as you'll begin to feel "human" again - less of the highs and more within range sugar levels. I've also sent you a PM. Feel free to message me whenever!


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## Vix (Mar 19, 2013)

Hi Tyleranne, 

I was diagnosed when 12 and I've been there and know how hard it is... but a few minutes a day to test your sugars and count your carbs will save you so much more time that making yourself seriously ill and ending up in hospital! It's tough, but if you put a few minutes a day into it now then your diabetes will take up much less of your time in the future... It takes me 30 secs to test my blood sugar and then maybe another minute to work out my carbs and 30 secs to do my injection so that's only 2 mins (guestimate!) at a meal time - I bet you stand in a McDonalds queue longer than that some times  The highs will make you feel rubbish to start with so by going on a carb counting course you will get your BGs under better control and that alone will make you feel like you have more time in the day if you're like me and feel depressed/tired/fuzzy when your sugars are high and I'm sure my brain slows down 

You can do this... Good luck 

Xx


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## Vix (Mar 19, 2013)

TyleranneKirkham said:


> Am there like every week but feel like am going round in circles they come up with options but never follow it through  I also had a miscarrage not that long ago an I feel like it was my fault coz my really bad control, I just want to get myself sorted! Carb counting a feel really difficult coz a just cant get it in my head x



Also, wanting a baby is a great motivation to get your sugars under control Tyleranne... My husband and I desperately want to start a family so I spoke to my DSN who told me of all the risks (scared the life out of me but now I have calmed down I can look at it more rationally) and that I have to get tighter control of my sugars to have the safest possible chance of having a baby and I can tell you it is the biggest motivation ever! I've been a diabetic 18 years now and try to control my sugars, never skip injections unless I accidentally forget occasionally but I am now so strict with my testing etc and I am more strict/firm with my diabetes team that they have to help ME to do this as it is something we want so much. I have never been on a carb counting course although attempted to self teach using the carbs and cals book and diabetes UK info so I have got myself on one, and it took a bit of persuasion but I am determined with some hard work to get my HBA1C below 7!

Don't blame yourself for a miscarriage, I think they are more common than people realise, and you cannot know that it was your diabetes that caused it - my mum had 4 before my brother was born and she isn't a diabetic so try not to carry the guilt with you. Concentrate on getting your levels better and look to the future if you want to start a family  

xx


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## TyleranneKirkham (Mar 19, 2013)

Thank you all for your support, I know I need to get myself sorted but every time I try I fail! Who does these carb counting courses ?


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## Lauras87 (Mar 19, 2013)

TyleranneKirkham said:


> Thank you all for your support, I know I need to get myself sorted but every time I try I fail! Who does these carb counting courses ?



Speak to your nurse. 
You can do DAFNE which is 5 days full time, I'm doing it after 10 years.
Have you been taught how to carb count?


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## Northerner (Mar 19, 2013)

TyleranneKirkham said:


> Thank you all for your support, I know I need to get myself sorted but every time I try I fail! Who does these carb counting courses ?



Ask your DSN what is available in your area. The best known are the XPert, BERTIE and DAFNE courses, but there may be something different where you live. You can do an online course (free) at http://www.bdec-e-learning.com/


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## HOBIE (Mar 19, 2013)

I done my Dafne about 4/5 year ago. And that was after 40 odd years T1. You do learn from them. & you meet others in the boat


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## TyleranneKirkham (Mar 19, 2013)

A think al have a look into these courses but never been offered anything like this up in Scotland ?


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## Lauras87 (Mar 19, 2013)

TyleranneKirkham said:


> A think al have a look into these courses but never been offered anything like this up in Scotland ?



There should be, depending where you are in Scotland you might have to travel to the nearest one.
Are you due at hospital soon or have a telephone number for your nurse to ask them to put you on it


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## TyleranneKirkham (Mar 19, 2013)

I see a young persons nurse and see her every 2 weeks when am on a get myself sorted faze, then I hit a low and stop then do see her for months and they don't contact me ether so only see her when I can really, she's off the now aswel and not back to work for 2 weeks so am stuck...


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## Northerner (Mar 19, 2013)

TyleranneKirkham said:


> I see a young persons nurse and see her every 2 weeks when am on a get myself sorted faze, then I hit a low and stop then do see her for months and they don't contact me ether so only see her when I can really, she's off the now aswel and not back to work for 2 weeks so am stuck...



In that case, try doing what I suggested earlier - start a diary (or use the app that was suggested) so that you have lots of information to show the nurse when you next see her. Really, you will feel so much better once you start doing something positive about controlling your diabetes instead of just letting it hang over you all the time  How about giving us some regular updates to help keep you motivated?


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## Lauras87 (Mar 19, 2013)

I'd ring the hospital & ask if there are any nurses working you can speak to.

I had a main nurse when I was young but now I have a pump nurse (as I'm in transition) but any normal problems one of the other nurses help out if she isn't available.


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## TyleranneKirkham (Mar 19, 2013)

Ok if a start a diary what should I do ? Best foods to eat ? Times to check bloods? Just some tips ..


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## Lauras87 (Mar 19, 2013)

Diary wise & it's a lot to record but it will help.

Before each meal
2 hours after
Before bed 
IF you get up in the night

record units of insulin
And anything odd (illness/stress) etc

 but you will see a huge difference once you get an idea with your bloods & patterns


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## Vix (Mar 19, 2013)

I'm surprised they've not given you a diary to keep... I have a BM diary where I write down my insulin and BMs before breakfast, 2 hrs after, before lunch, 2 hrs after, before dinner, before bed and before activity or if feeling hypo (I can try and PM you a scan of a blank page of my book and you can maybe print and photocopy it?) and at the moment I am keeping a food diary as my sugars have gone a bit crazy and even my DSN can't work out why - I've just designed my own version (I'm a designer so like adding pretty pictures to make things cheerier!) so I could send you the PDF of that too if it helps? But basically I have a column for time, BM, insulin, food, carbs in food...

I am still waiting for my hospital's mini version of DAPHNE (apparently they don't have funding for a full course) so I'm no expert but I've been recording my sugar levels for 18 years and it works for me...

xx


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## Lauras87 (Mar 19, 2013)

Vix said:


> I'm surprised they've not given you a diary to keep... I have a BM diary where I write down my insulin and BMs before breakfast, 2 hrs after, before lunch, 2 hrs after, before dinner, before bed and before activity or if feeling hypo (I can try and PM you a scan of a blank page of my book and you can maybe print and photocopy it?) and at the moment I am keeping a food diary as my sugars have gone a bit crazy and even my DSN can't work out why - I've just designed my own version (I'm a designer so like adding pretty pictures to make things cheerier!) so I could send you the PDF of that too if it helps? But basically I have a column for time, BM, insulin, food, carbs in food...
> 
> I am still waiting for my hospital's mini version of DAPHNE (apparently they don't have funding for a full course) so I'm no expert but I've been recording my sugar levels for 18 years and it works for me...
> 
> xx



That's stupid Vix!
Ooohhh pretty diaries


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## Vix (Mar 20, 2013)

Which bit Laura??  

Yes, my DSN admires my diary every time and tells me I should sell them  I'm not sure if they're all standard but the ones I get have a guy playing a saxophone on the front and I just don't get the relevance so I sew some fabric covers on them to make them a bit prettier... and I'm addicted to washi tape (pretty Japanese tape) at the moment so everything is looks a bit crazy at the moment!! 

xx


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## Lauras87 (Mar 20, 2013)

Vix said:


> Which bit Laura??
> 
> Yes, my DSN admires my diary every time and tells me I should sell them  I'm not sure if they're all standard but the ones I get have a guy playing a saxophone on the front and I just don't get the relevance so I sew some fabric covers on them to make them a bit prettier... and I'm addicted to washi tape (pretty Japanese tape) at the moment so everything is looks a bit crazy at the moment!!
> 
> xx



The fancy diary - I want one! I don't like my sax diary either!


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## Vix (Mar 20, 2013)

If I can get a blank one before we meet up I'll make you a pretty one Laura  xx


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## Lauras87 (Mar 20, 2013)

Vix said:


> If I can get a blank one before we meet up I'll make you a pretty one Laura  xx



Oooooooohhhh!!! 
You could make sleeves for the standard diaries & start a new trend


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## Vix (Mar 21, 2013)

you're on Laura - will you be my tester???  xx


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## Lauras87 (Mar 21, 2013)

Vix said:


> you're on Laura - will you be my tester???  xx



Yup!! Tom (yup I finally named my diabetes) is excited about this (probably coz he's grounded for a month)


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## Music&InsulinSavedMyLife (Mar 24, 2013)

TyleranneKirkham said:


> Did you find it difficult when you first got diabetes, how long it take you to get it under control? I was thinking about maybe getting a food substitute if one meal a day so at lease I could get that meal under control but don't know if that is possibil



Hiya, I'm 16 and have been diagnosed for a few months. You first need to get a better mind set, reading the conversation it sounds like you havent accepted your diabetes. Its nothing that will go away if you ignore it! You need to make time for it to be able to sort anything. As soon as I accepted what I needed to do, then you will fall into a routine and think nothing of it. It varies from person to person with how quickly they get it uner control...I mean I was diagnosed in December and I have pretty good control of my sugars...and I a not carb counting or anything like that. I use good guessing, write all my results down and what I eat to see how it affects me, only you know what your body needs and how it reacts to insulin. Hope this helped, need anything feel free to message me


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## HOBIE (Mar 25, 2013)

Well said M & I S M Life !


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## Twitchy (Mar 25, 2013)

Hi Tyler 

I can relate to a lot of what you're saying - it's not something anyone would ever voluntarily sign up for & can be a lot to deal with even without depression in the mix. If your sugar levels aren't fairly steady at a reasonable level that will make you feel worse emotionally too, it can be a bit of a viscious cycle. 

It might be worth speaking to your dsn & asking if you can access some specialist help via your clinic to address bith how to manage your diabetes & how you feel about it.  In terms of tools to deal with diabetes a dafne course will probably be a big help - for me it was like someone finally switched the lights on about multiple daily injections / mdi & gave me some rules to go bybthat regularly worked! In terms of how you feel about it I believe that most clinics should provide access to psychiatric help these days I think in the form of counselling...failing that your gp might be able to help by getting you some therapy like cbt (cognitive behavioural therapy), where you can be helped to change the way you looks at things. I'm doing cbt at the mo, I was very cynical at first but actually, it does seem to help (shock horror lol). 

In the meantime, it might be worth setting yourself a basic menu for a few days to see if you can then spot a pattern - eg stick to 2 weetabix & milk for breakfast, a 2 slice sandwich & medium apple for lunch & say a set weight of boiled potatoes (+ meat & veg) for tea just to give an idea, that way you'd only need to figure out the carb values once...you could have non carby snacks (cheese, cold meat, salad etc) between meals as this shouldn't dramatically affect your levels. at least this way there would be less variables so it might be easier to spot patterns? 

Whatever you do feel free to let off steam here - it's a support forum after all & we're here to try & encourage each other.  Take care x


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## geoffreyray (Mar 26, 2013)

Hi when I joined today had no idea things were so bad. Help given on your pages seems invaluable


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## JontyW (Mar 26, 2013)

Tyler,

Here is a posting from another forum, which just shows you what can be done ...

*Getting there!*

"Hello all, I'm Sean and I'm new to this forum! This is kind of an introduction as well as a success story so I suppose I've posted in the right place here.

I was diagnosed with type 1 diabetes when I was taken into hospital at age 6. It was a weird thing to get used to - what child of that age WANTS to prick their fingers all the time and have injections multiple times a day?

I'm now 20 years old and it's been a tough ride. In my teen years I was constantly in and out of hospital because I hardly ever took my insulin. It was only in January last year that I felt something needed to change, after I spent 2 weeks in hospital. I had never felt as gravely ill in my life as I did during that particular month of my life. I had lost so much weight that I barely recognised myself. All of this was topped off by a doctor telling me I was going to die if I continued this way.

It was time for me to change. As I was unemployed at the time, I decided it was time for me to get a routine together that didn't involve sitting around eating as much rubbish as I wanted and neglecting my injections. I started running 3 days a week (was hard at first but an absolute breeze after a while!), eating at regular times and attended a DAFNE course so I could figure out eating habits and carb counting. I won't lie, it was tough to get my head around it all to begin with and it's always difficult to change old habits.

One of my dreams has always been to travel across the world, and I knew I'd never get to do that if I didn't take control of my condition. I've now gotten my HbA1c down to 6.1% with that motivation constantly at the forefront of my mind and I've never felt better.

The best advice I can give to someone who goes through the same phase of neglect that I did is to just think of all the things you could end up missing out on if you let diabetes get the better of you!"


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