Hi All :)

Just thought I'd introduce myself, I'm Hayliee and I'm 21 years old and I was diagn

Haha well now I feel a tool, bloody touch screen, anyway I'm 21 and I was diagnosed with type 1 diabetes on Xmas day 2010. If I'm honest the severity of the disease is only just starting to sink in recently. At first I stuck my head in the sand hoping it would all dissapear, sadly as you all know, that's not the case. It's 3:30am and i am currently led in bed scared to sleep due to palpitations and constant heart flutters that I have been experiencing recently. I found this forum just as I was mooching on the net about DAFNE as I'm hoping to be placed on a course in my area soon (Lancashire). My sugar control is terrible, I know little about the disease and how to control it and as a result I'm not, my blood sugar levels have been in the region of 18 - 30 for around 18 months now. Shocking I know, but I was stupid and really just couldn't get my head around this. I also suffer from Neuphrotic Syndrome I was diagnosed when I was 12 months old. When I was diagnosed with Diabetes I was having many personal & family problems which led to me having poor control, like I said I didn't understand the severity and to be Frank at that time I didn't care. 18 months on and a little wiser and after some research and interest on my wellbeing (I know that sentence sounds bizarre) I have come to realise the damage I am doing and have already done. I'm already suffering from numbness, tingled in my arms and legs, palpitations, blurred vision. I haven't slept at all really for the past week as my palpitations are getting out of hand, truth is in scared to sleep, scared I might not wake up. I've had 1 "hypo" since diagnosis and it was a scary thing. I'm hyperglycaemic so when my blood sugar does drop (lowest I've ever seen is 10) I feel like in having a hypo. I often have ketones and I was smoking also, thing of the past now though. Truth be told I'm so angry at myself for not realising how serious control is earlier on, and Im disgusted with myself. I'm finding it very hard to adapt. My last Hba1c was 10.6. I have taken it upon myself to research calorie counting as Im waiting to be placed on a define course and awaiting my bolas plan. The nurses at my hospital often find it hard to help me as they say I'm specialist. I really do hope things get better if I'm placed on a course, because at the moment I can't cope it's really effecting me day to day. I know what I need to do just dont really know how to get there. Please tell me with education it gets better! Hope I haven't bored you all death lol! Look forward to any replies guys x

Hi Hayliee-Louise, welcome. First thing you are obviously very bright, that comes over in your post. Second, you have now accepted the fact that you have a problem and cannot continue to ignore it. So you are half way there. It is not easy and no one should tell you that it is. I have had Type 1 for 30 years and still my control is poor even though I have done DAFNE and worked bloody hard at it. But we both have choice, try and improve to hopefully enjoy a happy long life or ignore it and suffer the consequences. Badger your GP to get on a DAFNE education course, point them to this site, they will fight you but don't give in, show them that improved control will save the NHS money in the long term.
You shouldn't have to live through the worries that you have, they are not necessary, with help and your commitment you can cope with diabetes.
Good luck to you, you have a life to enjoy.

Hi Hayliee-Louise, welcome to the site..........

You haven't been diagnosed very long so although your control has been bad for a while, you can turn it around and reverse some of the symptoms you may be having. The fact that you have acknowledged you should start to make an effort is really good, and a lot quicker than I realized, took me 10 years really.

The quicker you get on DAFNE the better, the things your told about just make it seem so simple, its amazing, dont get me wrong, Diabetes is still a pain the ass and you can get blood glucose readings that just dont make sense, but for the majority of the time it does really work.

An HbA1c of 10.2 is not too bad, I was 11.8 pre DAFNE, any higher and they were going to say NO..... ......and I was actually following the basic principal unofficially for over a year.......

What insulin regime are you on now....?DAFNE will teach you to spot patterns with your blood sugars, establish how much background insulin you need over a 24 hour period and successfully change your own doses of both your background and meal time insulin.

In the meantime you could visit the Bournemouth Online Carb Counting course, basically DAFNE but online........you can find it HERE.......might give you a head start and let you see some good blood sugars.

If there are any general questions or information you would like, dont hesitate to ask, no question is silly.....

Hope to hear from you soon.....

James....

Thanks for the replys guys, hearing other people's story's really does help you understand your own. Im going to hospital this week for a 24 hour heart tracker, doctors suspect Ectopic Beats, good or bad news it will put my mind at rest if I know once and for all. Im pushing for the course and awaiting my bolas regime, I'm currently on humalin M3 quickpen, taking 20mmol AM & 20mmol PM. I've explained to doctors I'm 21 with no real routine or structure to my life and can never really plan meal times, I have a busy job working for the NHS and it's a case of "grab lunch when you can". I love my job and the people I work with, doctors at my surgery are often giving me advice and keeping there watchful eye on me lol! At first checking my blood was a real pain so to be honest I didn't bother. I've just recently been given the Accu-check mobile tester which is making life a lot easier and now check my blood between 5/6 times a day. With stoping smoking, cutting out carbs and introducing exersize slowly until Im placed on DAFNE & Bolas, I'm hopping I can improve my sugar and maintain my weight as o l

I lost 5 stone in 6months once I was started on insulin. I was dress size 24, I am now a 10. Although I feel great as i never really understood why I was so big and jut couldn't shift the weight, I know it wasnt healthy. How have you guys found diabetes & weight gain/weight loss?

Ps. Thanks for the link James, I'll deffo be having a go at that, just what I need whilst i wait for my new regime! Thanks a lot.

Hayliee-Louise said:
How have you guys found diabetes & weight gain/weight loss?

Hi Hayliee-Louise,

I've just read your post and just wanted to say hi.

You sound like you're in a bit of a scary place at the moment but, from what you've written, you seem to be moving everything in the right direction so just keep going with that.

Diabetes is a bit of a pain in the a*se but there are many worse things out there and, if you spend a bit of time on it and learn about your own body then you can make life a lot easier for yourself. The more time and effort you put into your diabetes, the better it responds to you.

Definitely get yourself onto a DAFNE course asap. They're completely invaluable in my opinion.

Yes diabetes means that you have to think a bit more about what you're doing but that's not necessarily a bad thing. Your job sounds pretty frantic and stressful but DAFNE is designed for things like that. When I was first diagnosed (23 years ago) we were all given set doses of insulin that we weren't allowed to change ourselves and we were expected to eat the same amounts of carbs at the same times every day. Obviously no-one can really live like that. These days, with much better insulins and more research into regimes, we can be totally flexible. DAFNE is designed to fit around your own particular life and to maximise your control, whatever. It even gives you the flexibility to eat the sort of food that you like although, as with everyone, fats and sugars still aren't great things to live on! I work silly hours and have a young child. I'm not perfect by any means and it's something that I have to work on all the time but DAFNE has made life so much easier for me.

Congratulations on your amazing weight loss - that's fantastic. You should be so proud of yourself. You must be feeling so much better already. Now you just need to get an idea of what's going on with your diabetes and you're well on your way.

Are the other health problems linked to the diabetes or might they be something else? Obviously get those looked into asap as well for your own peace of mind. Stress is a great factor for me in bad sugar control so, once you can get answers for that, that should all help too.

I don't actually think that your HbA1c is as bad as it could be either. You really haven't got that far to go...

All the best with everything.

Melissa