I'm really struggling...

[shr1969]

Hey! I'm 18 and have been diagnosed for five years now. My control has always been up and down, and I guess if I were to be totally honest I have never been fully in control of my diabetes. Things however, got a lot worse when I started university in September. I stopped taking all my insulin and stopped doing my bloods. I have 7 other medical conditions, three f them don't affect me that much but my diabetes, fibromyalgia, being partially deaf and having insufficient vitamin D really do. I don't really look after myself. In January I was admitted to hospital with DKA. And after I came out this kicked me into trying to sort it all out. Now though I'm slipping again. I've lost motivation and I really don't know what to do. I am scared about getting ill again. It's just that I guess, again if I'm being totally honest, I don't know how to accept the fact that I am diabetic, and that for the rest of my life I will be diabetic... Anyone else struggle like this? Has anyone been here and gotten out of it? And if so how? I want to be in control of my diabetes, I just don't know how to...


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Hey I've just been in the same boat. My control see to be really good however I hit a period of "diabetic burnout" just after Christmas. This resulted in my last a1c been 17 which was really bad and gave me the kick I needed. Don't beat yourself up over it. The important thing is to focus and getting back in control day by day.

 

[sammi4688]

Hey! I'm 18 and have been diagnosed for five years now. My control has always been up and down, and I guess if I were to be totally honest I have never been fully in control of my diabetes. Things however, got a lot worse when I started university in September. I stopped taking all my insulin and stopped doing my bloods. I have 7 other medical conditions, three f them don't affect me that much but my diabetes, fibromyalgia, being partially deaf and having insufficient vitamin D really do. I don't really look after myself. In January I was admitted to hospital with DKA. And after I came out this kicked me into trying to sort it all out. Now though I'm slipping again. I've lost motivation and I really don't know what to do. I am scared about getting ill again. It's just that I guess, again if I'm being totally honest, I don't know how to accept the fact that I am diabetic, and that for the rest of my life I will be diabetic... Anyone else struggle like this? Has anyone been here and gotten out of it? And if so how? I want to be in control of my diabetes, I just don't know how to...


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Hi hun, just read your post and i feel exactly the same as you. I am also struggling tremendously! I am 25 and was diagnosed with gestational diabetes 6 years ago. After having my baby it turned out that i had Type 1 diabetes. I dont think i have ever really come to terms with it or accepted it as i am still struggling now. I am due to go on an omnipod tomorrow which is a pump but without the line, I kind of felt i was defeating myself as for so long i said i wouldn't go on one, but as it is without a line i don't feel ill be as restricted. I just feel i need that extra help. Its relieving to find someone else in my position, hope youre ok x Sam

 

[Dominoes]

Need advice on how to bring my levels down ?


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[Spiker]

Need advice on how to bring my levels down ?


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I suggest you start a new thread, introduce yourself, say something about how you currently manage diabetes - medication, doses, times, diet, exercise - and what problems you are having. With more specific information people will be more able to help.

 

[Adrian1981]

Hi,
I can relate to your description well. I was diagnosed with type 1 diabeties when I was 2 and have had it now for 30 years. I was in denial from the point my parents stopped monitoring it with me.
School was difficult as my friends always stopped off at the shops on the way to school and the temptation was so great.
At the age of about 18 I began to do only one thing for my diabeties and that was inject insulin. There was no carb counting , no blood sugar levels been tested so if I ever did test them I can imagine they were all over the place.
In my late 20s I was diagnosed with coeliac too which meant that all the fibre and things used to maintain a good diet were written off too.
I tried the carb counting refresher course which was great until a month later and I soon went back to my old habits.
In recently years, although still not a golden patient as my hb1c is 8.9 , I have learnt that there is one thing that I need to nail in other to improve my overall control. This was carb counting. I got the carbs and cals app, for those not aware is a pictorial guide to carbs in well known meals and has pictures of different portion sizes to help you gauge your meals. I find this a lot easier than trying to guess all the ingredients going into a made meal. I now realise I was so far off the correct carb values for a meal with my guesses.
This carbs and cals App along with a glucose buddy app I find that I am getting slightly better at my control. I use a correction dose to rectify high readings ( which I didn't know existed for a long time) and record all my blood test results in the glucose buddy app. With an averaging blood sugar level report I now try hard to get this average down , which is my current motivation tool for my blood control and an indication of how my hb1c will be.
Good luck and all the best.
Adrian



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[daisymoomoo]

I can really relate to your situation as I have many health issues as well as type1. I was diagnosed at 11 and of course my folks controlled that really well for me... Uni came along and I was out of the house, on my own, doing my own shopping and pretending I was not type 1. No insulin, no testing, just living it up and to the max. My 20's were full of disappointment and more sickness, visual issues and heart failure (not diabetes related) meant that every time I wanted to get control of my diabetes, something more 'important' came along and I devoted all my energy to that.

I did seek health counselling and did find it very beneficial.

SHAIRE was step 1 of me understanding my condition, step 2 was a really supportive DSN.

Only in the last 2 years have I regained my control and owned my conditon. The iBG Star meter on my iPhone (and case from Canada), using the my fitness pal app, regular clinic appointments with a very positive DSN.

Don't let everything get on top of you, 2 years ago my Hba1c was 14 and I never thought i'd see that come down low enough to become a mother, last week it was 6! Set small goals and look forward.

 

[leanne_natalie]

Again, thank you all for posting... The more people who post the more I don't actually feel alone in it all. I'm never in contact with anyone else who is diabetic so actually hearing other people's stories has helped me to feel less alone. So thank you! Since writing on here I haven't really missed an evening injection and I am making more of an effort to inject and do my bloods. It's going to take some time but I do really want to get on top of it. I don't want to be in denial and I don't want it to run my life. I just want to accept it for what it is and carry on


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[Amal]

I totally get you. I've been diabetic for nearly 6 years now. Im 21 and at uni. My control atm is terrible and this is down to i feel the stress of uni and how i cope with that stress. Im a comfort eater you see, when i get stressed i comfort eat and as a result my control is poor and i've gained weight. I've realized acceptance of diabetes is key to good control- i had this issue of acceptance before, but now i guess the issue is that perhaps i see myself as the same as everyone else, when I'm not. I need to acknowledge and register that I'm not the same as everyone else, i am a diabetic and i have to work that extra much harder than everyone else and control my diabetes, and not let it control me. My health always needs to be my number one priority, before uni and everything else. Now of course this is just all talk and no use until i actually put it into practice. But i can say that i get you, we're in the same boat. I pray that you, I and every other diabetic who are struggling, i pray that we gain control and manage our health an diabetes effectively.


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[leanne_natalie]

It is hard, but I think the more we use things like this the more acceptant we will be. I know for me one issue is feeling so alone in it all and through using this that feeling of being on my own in it all is starting to get better. If you ever need anyone to talk to just contact me on here. I may not have it all sorted and I certainly haven't accepted the fact that I am diabetic and that I have other medical issues but if you ever need support I will always be here to help


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[Amal]

Your too kind, the same from me a well, if you ever need someone to talk to im here and so is everyone else on this forum. And i defo agree, the more we use this forum the more we'll get closer to accepting our illness. Me personally, i don't know of any other diabetics other then the ones on this forum an other forums, so Im grateful that such forums exist. And just remember, your never truly alone, God is always there with you


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[AndyS]

Hi Leanne_natalie,

Glad to hear that sharing has helped. I wouldn't say I know where you are at since I was only diagnosed 5 years ago. It did come as quite a shock but it was only the latest in a long list of health issues over the years.
One thing that I had kind of learned years ago was to learn everything I could about any condition I was diagnosed with. Now that can be a good and bad things since you almost immediately see all the worst case scenarios and scare yourself silly that they will happen to you.
In that case it sort of comes down to a choice I guess, you can learn what you need to know in order to control the condition (instead of the other way round) or you can fear it.

In some ways it is like the world throwing a brick wall up in front of you. You can choose to huddle in the shadow of it or to say "to hell with that" and climb up that thing. Granted sometimes the view sucks from up there but at least then you see things coming and can prepare.

This is kind of how I approached Diabetes when I was given the news, I wouldn't say I ever fully accepted it but I did accept that I was going to have to be do a little more planning in daily life and just deal with it. I do still have days where I may just go off the rails a little but when I get up each morning I just deal with what that day brings and it seems to work well enough.

It might be worth seeing if there are any support groups near where you are, as you have found just being able to talk to others with the condition can be very helpful. Even if you don't pick up anything that can use it's nice to know that you are not alone and actually you maybe aren't doing such a bad job after all.

One last thing, if you haven't done a DAFNE course, have a word with your DSN to see if you can get signed up for one, they can give you some very good skills for learning to live with this.

All the best and hope things keep getting better for you.

/A

 

[sammi4688]

My last Hba1c level was 123 mmol. This has given me the kick up the backside to make me realise i need to take control of diabetes not let it control me! I went on the Omnipod pump yesterday, hoping it will get me to a healthy level (with work). Diabetes is so hard and even more harder to deal with when there is no one else to talk to who might be going through what you're going through and also your age! I'm 25, working full time, a full time mum and living with my partner, so trying to do all that plus manage diabetes is UNBELIEVABLY hard.
I went on the MEDIA course and that helped educate me on carb counting which i have found very helpful.
If you ever need to talk or rant youre welcome to message me!

 

[Flowerpot]

Hi leanne_natalie

Good on you for realising you need some help. I know exactly where you are coming from. I was diagnosed 36 years ago and arriving at university in a new city I started to think may be diabetes didn't need the attention I had given it at home with my parents and a friendly diabetes team. I didn't register with any medical team and cancelled my appointments back home. I fell through the net and if I could rewind and rerun those years knowing what I know now, I would in a flash. Diabetes would be right up there in order of importance.

Please get as much support medically, psychologically, friend wise as you can, diabetes is manageable whilst still enjoying student life and having a great time.

The complications I set in motion for myself during that period have changed my life. Controlling the diabetes part is the relatively easy bit. Complications aren't just minor irritations that walk hand in hand with diabetes they take over and run the show. I thought complications might start to bother me when I reached my eighties, fat chance! they started to hit me in my twenties.

Good luck with getting to grips with it all, there is a lot of great help out there and on forums like this. I wish you well.

 

[C0meAlongPonds]

Hi, I am 17. I have Type 1 diabetes and have had it since I was 9. Around about this time last year I had DKA and was admitted to hospital, if it hadn't been for my brothers football being canceled I may not be here today. However after this I have continued to distreat my diabetes, I would not do my bloods for days and then I would alter my monitor to make it look like I had done them, I would change my bloods in my record so that they looked good and not all messy like they were. And this continued for months until my parents found out and then if stop it and start it up again a few weeks after, this happened until the start of January when I decided if stop taking my insulin because I was sick of my friends and family looking at me like I was sick, like I had become the disease. I also have Coeliac Disease which is easy to manage and recently found out I have an under active thyroid but that's a story for another day, my point is my life you can turn your life around, go to your doctors and consultants and admit you have lost your way and they will help you through it, they will adjust your insulin and tell you ways to help change your lifestyle, I feel like since I have admitted what I have done, I haven't had to be hiding away from people and nobody sees me as my disease anymore. If you are willing to accept your mistakes you can take a hold on your diabetes once and for all!

Katie.


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[jack412]

that's a very brave post comealong, it's not easy to put your hand up and say I stopped looking after myself.
It can seem all too much sometimes. How is your BG now, are you able to test regularly and have your jabs.

 

[this is too difficult]

Hi, I am 17. I have Type 1 diabetes and have had it since I was 9. Around about this time last year I had DKA and was admitted to hospital, if it hadn't been for my brothers football being canceled I may not be here today. However after this I have continued to distreat my diabetes, I would not do my bloods for days and then I would alter my monitor to make it look like I had done them, I would change my bloods in my record so that they looked good and not all messy like they were. And this continued for months until my parents found out and then if stop it and start it up again a few weeks after, this happened until the start of January when I decided if stop taking my insulin because I was sick of my friends and family looking at me like I was sick, like I had become the disease. I also have Coeliac Disease which is easy to manage and recently found out I have an under active thyroid but that's a story for another day, my point is my life you can turn your life around, go to your doctors and consultants and admit you have lost your way and they will help you through it, they will adjust your insulin and tell you ways to help change your lifestyle, I feel like since I have admitted what I have done, I haven't had to be hiding away from people and nobody sees me as my disease anymore. If you are willing to accept your mistakes you can take a hold on your diabetes once and for all!

Katie.


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You must have a special relationship with "The Doctor".

 

[C0meAlongPonds]

They seem to be coming down a lot Jack, I can check them regularly and get on top of them if they are a little high or a bit low. I inject when I am supposed to and with the right amount of insulin. I am going to Malawi in June so having a goal has helped me stay on track and not sway. I tend to bottle up everything inside and my friends are great but they don't know what it's like to have people look at you and the first thing they say is "how is your diabetes?" So that was a contributing factor to losing my way, I haven't been able to tell them what happened in January but they know about the DKA last year. My parents have been really supportive in trying to help me become more independent with my diabetes and everything else.


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[jack412]

I felt like an american there for a while, I had to google where Malawi was
that's good to hear that your looking after yourself, no doubt you are putting some flesh/muscle back on getting to a healthy weight. From other teens here it can be a bit sudden and it doesn't gel when you look in the mirror. it takes a while to get use to the new healthy you

I know it doesn't feel like it when the first thing out of their mouth is 'how's ya diabetes' but it is a genuine caring about you by your friends.
you would much rather them say 'nice dress, I love your hair' and not even mention diabetes ever again.

 

[C0meAlongPonds]

Yeah, I'm slowly but surely getting it all back on track.

I know my friends mean well and are only asking out if concern and sincerity but it can get annoying every now and then


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[jack412]

yes, even though it's caring, it's just focusing on something that's a Pain In The Ass. So what is the attraction of Malawi, do you have family there?