New here, but not new to diabetes!!!

[LeonT]

Hiya,

I'm Leon, 34 from London. I'm a husband, dad to a toddler with another on the way (Sept). I was diagnosed with type 1 when I was 14. Back then I was a model diabetic - however, living at home with my parents probably had a lot to do with that. Since leaving home some 12 years ago my control has been, well, non existent. I literally did everything that I wasnt supposed to do - in fact, the only thing I did well was to stick to diet drinks . I never went to hospital appointments, I avoided my GP checkups despite threats to stop my prescriptions, I NEVER tested my BG, I ate what I wanted and drank the same ridiculous amounts of alcohol as my mates.

Anyway, my GP eventually caught up with me and I had a really good chat with him. A big problem for me is that I hate to be bad at anything, be it football, running, cooking....diabetes control!!! The more rubbish I felt about my ability to control my diabetes, the less I wanted to face it. Anyway, my GP made me realise that I wasnt the first person to go off the rails and I probably wouldnt be the last. He made me see, without the usual shock tactics that in all honesty I had desensitised myself to, that what I was doing was madness. So I got re-referred back to the hospital and rather than see it as a chore I'm really "enjoying" it. I've changed my regime from novomix 30 to a basal/bolus regime (Lantus/Apidra) and the flexibility is suiting me. I'm also going through test strips like they are going out of fashion (my GP will soon, no doubt, start regretting ever speaking to me lol)!

My HBA1C (didn't even know what this was a few weeks ago) was 10.6 four weeks ago but today its 9.2 - meaning that i'm doing something right ;o)

Anyway, not really sure of the point of my loooong, rambling post (i've clearly got no issues with talking about myself lol) but it'll be good to talk to other diabetics as i've barely spoken to any in the past 20 years!!

Cheers

Leon

 

[ailz]

I'm a type 2 and have been for 12 years, but I've pretty well ignored it and am now starting to get some bad figures. So I joined this website and it's very, very useful. The help and back up that you get is second to none.

Someone more interesting will be along soon :lol:

Cheers
Ailz

 

[donnellysdogs]

Type 1 25 years, and certainly never been an angel towards my diabetes during the whole length of that time.......very fortunate that I had a great customer of mine who was a Consultant Orthapaedic Surgeon who basically told me I was killing myself.....woke me up enough to care about myself again.

I have been very, very lucky with my diabetes, and so far I have not suffered any complications. This in itself is just pure luck, and I feel dreadful that others who have looked after themselves a lot better than I did have suffered from them instead of me.

Don't get me wrong, I wasn't outrageous and out of control, but I too would cancel blood tests and appointments and skip doing blood tests. TBH, I don't think that there is that many type 1's that have honestly been holier than thou every single day since diagnosis. I only know one person that I have met that says she has never veered off in 50+ years of diagnosis.......

I hold my hands up and say that I haven't been.....now, with age I do wish I had been better, BUT I can't magically turn back the clocks. I will do my utmost to try and help others now, as I just count myself as very, very lucky and hope that my honesty and trying to help others will do some good.

I feel especially for parents of children with diabetes, as I wasn't an outrageous rebel, and yet I got complacent with my diabetes for a few years, and I wish I had that knowledge to help the parents of kids nowadays to help them keep as good control as they possibly can, with enjoyment included...

Always nice to know that you aren't the only one that veered of track for a while!!!! With the hba1c levels of the average diabetic within the UK population, I know that we aren't the only ones that have veered off course for a while......................

 

[noblehead]

Welcome Leon!

Enjoyed reading your post and can relate to many things you wrote, pleased you have decided to take control and I look forward to following your progress over the coming months.

Nigel

 

[cleo82]

Hi Leon
Could have written that myself! (down to the sticking to diet drinks... no quams about eating anything and everything as a teenager / early twenties but daren't touch the "real" coke!!! )

My Hba1c was 9.3 at the start of the year and I've got it down to 7.9 so far - one thing I've found really helpful is my contour usb meter - in particular, plugging it in every couple of weeks and trying to beat my last average. I've found checking before every meal and 2 hours after (and if I don't feel right of course) gives a 10 week average figure thats pretty close to hba1c, so its good to track your progress between checkups. (once you stop cheating anyway - used to use another meter if I thought I'd be high :roll: ) If you don't have a usb meter, you might be able to get a cable/software from your meter company, or you could manually input results to excel and get your graphs, averages etc from that.

The doctors seem to go through phases of encouraging you to check more often, then not to check so much, but i've had no complaints about the level of strips I order. 6-7 tests a day seems to be in their happy range (whatever that is!) just now. They'll soon tell you if you're checking too often.

Righty ho, enough of my rambling! Good luck getting back on track yourself, and give me a shout if you want to compare average before & after meal results on a weekly / fortnightly / monthly basis or anything?

 

[LeonT]

Thanks for the "welcomes" guys!!!

Cleo - I thought I was the only one that did the "Glucose meter" trick! In fact I thought I invented it :lol: Diabetic nurses worldwide must roll their eyes everytime we think we're outsmarting them!!!

Oooh, you've got the contour usb??!!! I want one of them but i've only recently changed to the Aviva Nana and my gp got a bit funny when I asked for test strips as I had not long receieved strips for my previous meter. He told me the strips were expensive...at which I replied that in the past 10 or so years I had hardly asked for any test strips meaning that I had in fact saved the surgery money :lol: Thanks for your offer of results comparisons - i think i'll take you up on that. I'm on a DAFNE course next week and after that I will really knuckle down.

I have been very, very lucky with my diabetes, and so far I have not suffered any complications. This in itself is just pure luck, and I feel dreadful that others who have looked after themselves a lot better than I did have suffered from them instead of me.

I feel exactly the same mate. At times I honestly thought i'd been misdiagnosed!!!

Thanks again guys

Leon

 

[aaliya]

Hi friends, Its aaliya here, I wanna say Hi to all of you.

 

[daisy1]

Hi Leon and welcome to the forum Although you are not new to diabetes (just ignore the reference to "newly diagnosed") I think that this basic information put together by the Forum Monitors might still help you to get your levels, and your HbA1c, down a bit more. The DAFNE course will be very helpful to you. Ask as many questions as you like as there is always someone here to help you.

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.

 

[noblehead]

I'm on a DAFNE course next week and after that I will really knuckle down.

That is great news Leon!

The DAFNE course will teach you how to dose adjust your insulin to the carb content of your meal, this in time will lead to improved control and give you a greater flexibility when eating out for example, there's loads more to learn on the course and the week will be very enjoyable and you'll get to meet other type 1's in a similar position to yourself. Good luck!

Nigel

 

[nicole_1135]

Hello!
I just read your post, and your story is exactly the same as mine! I've been diabetic now for 11 years (god, that's more than half my lifetime!) and I've had no control over it for the majority of that time. I saw my nurse last week and together we're trying to get me healthy again, but I wanted to meet other people who have been through the same difficulties as me.
Why didn't you have better control? I'm not being nosy or rude or mean or ignorant, I genuinely want to know what the reasoning behind you ignoring your diabetes was, as I am at a loss as to the reasoning behind mine. I don't know why I always quit and pretend that I don't need to test or inject and that I'm perfectly healthy.
My behaviour genuinely baffles me. I like to think I'm fairly intelligent, and I know all about the dangers of high sugar levels and yet I continue to ignore it. I am literally jeopardising my life, and I seem to think that it's ok. I don't want to think like this any more.
I would just like someone else's opinion really.
Any advice you give me would be a massive help I think.
Well done on getting healthy too! Hopefully one day I'll be where you are.
Sincerely,
Nicole

 

[donnellysdogs]

Hi Nicole and Leon..

You are both pretty young really. I have had times like you both, as well. There is nothing with me either that has caused it-except possibly complacency whilst I got away with it!!!!! I think there is very few of us that in life in general don't slip down on a few things...it's all just learning and the way us humans are.

Not denying of course, that there are some real angels who have never fallen off the wagon (so to speak), but I'm not one of them, and can see myself in both of you....I genuinely believe that it is human nature...but more importantly-there is something that brings us around to think that we have to do something about our levels etc.....

 

[LeonT]

Hey Nicole

Sorry I'd forgotten that I'd posted here and haven't been checking.

It seems like there are a lot of us out there - far more than I was ever aware of! I'm doing a DAFNE course at the moment and there are 3 of us that got type 1 as children - all of us told similar stories! Looking at it logically it kind of makes sense - basically as children you do not always have the tools to deal with what is a massive change in your life - one that makes you hugely (in your eyes) different to your peers. My control was great when my parents took control but as soon as they trusted that I would be ok, and left me to my own devices, my control went of of the window. At 16/17 I was far too young (and probably immature) to realise the consequences of what I was doing. Additionally, at that age being told that I might have complications 20/30/40 years in the future was impossible for me to contemplate or even appreciate.

More than anything though I think, looking back, that I was desperate to fit in - as all teenagers are. Injecting, testing, avoiding/reducing alcohol, taking time off work/college to attend hospital appointments, showing food/nutritional awareness, hypoing in public are all things that would make me instantly appear different from my mates. It was "cooler" in my eyes to be seen as the diabetic that binged on chocolates as that was far more impressive :roll:

This went on for some time which made it difficult for me to "come clean" and admit that I was struggling. Also, suprisingly, I wasn't experiencing any major problems i.e. hospitalisation etc - so there was no need for me to change.

You've quite clearly realised that things need to change and you should congratulate yourself for this as it took me 20yrs to get to where you are! I'm not sure where abouts in the UK you are but if you have the opportunity to get on a DAPNE course (or something similar) then you should do it as it will allow you to meet other type 1 diabetics. Oddly, I didnt know any type 1 diabetics in the past 20 years which I believe was another part of my problem. In just two days on the course I've met others that made up the figures in their diaries and used different colour pens on the morning of hospital appointments to record them, others that just presented to their hospitals when their driving licences needed renewing and others that used multiple glucose meters so that their "official" one could be used only when blood sugars were at an acceptable level :lol:

If you cant get on a course, or just feel like a chat, then feel free to contact me (i'm sure there's a private messaging facility on this site) and I'll happily share experiences with you and hopefully encourage you. Since sorting my head out I feel much better and I feel very proud of myself - its taken a little while but it's worth it!!!

In the meantime, dont continue to beat yourself up looking for answers - its happened now and you are aware that things need to change. As donnellydogs rightly says...you were/are young!

Wow, that was long - if you havent fallen asleep halfway through give me a shout

Leon

 

[cleo82]

Hi Leon, and anyone else for that matter!

How you keeping post-dafne course?

Not sure where best to post this so thought I'd come back to the original one. I mentioned comparing results to try and keep us on track (sorry, been meaning to post all week but had a hectic one with work) you still interested? if so, whens the best time to do this? I'll prob post at weekends myself - weekly/monhly/fortnightly?

Had a really good fortnight myself, average blood sugar wise...
Average before meal reading 5.5,
Average 2 hours after meal reading 7.1
(still quite a few hypos in there though, and a number of highs too, mainly due to (a)forgot to do jag twice - b'fast at 7am, jag couple of hours later:roll: and (b) overcompensating when hypo...start munching and forget to stop sometimes... so not quite the model diabetic yet!)

Tried reducing my carb intake but was so hungry I ended up eating more than i would have done in the first place :lol: so put that idea on hold for a while!

Had hba1c taken the other day for clinic next thursday, so fingers crossed I'll be the right side of 7 this time...

hope you're keeping well yourself, and still enjoying being in control
best wishes
Cleo

 

[stephenrowland]

Hi, Leon!

A belated welcome from me. I too recently joined the forum and really enjoyed your post. I think I've had it easier than you, being diagnosed as LADA at 40. At this age you're less likely to commit the youthful indiscretions you refer to! My big motivator is my kids and the need to keep as fit and healthy as possible for them - as a father of a toddler and another on the way you'll know what I mean - they require huge amounts of energy!

This next bit might sound a bit stupid but I can't help feeling that the fact that we have to do things that non-diabetics don't in order to remain healthy, and have to monitor and control our lives in fine detail, is a really worthwhile challenge. I hope you know what I am trying to say. It all sounded quite good in my mind but isn't coming out too clearly!

I too have recently moved to a basal bolus regime (after previously using novamix 30). The flexibility is great and I have seen a huge improvement in control. The only problem is that I'm using levemir and this is leaving lumps....oh, well.

Anyway, good luck with it all.

Stephen.

 

[noblehead]

My big motivator is my kids and the need to keep as fit and healthy as possible for them - as a father of a toddler and another on the way you'll know what I mean - they require huge amounts of energy!

There's no better reason Stephen! I too found that when my first child was born it made me realise I will not live to see them grow-up unless I change my ways and accept my diabetes, since this time my control has gradually improved and I hope one day to see my first grandchild and watch him/she grow-up too.

Nigel

 

[LeonT]

Oh blimey - it seems that just like i've done with my diabetic control over the years, i've manage to neglect this thread!!

By way of an update I've now graduated from DAFNE and am so happy that I managed to get onto the course! It taught me things and the principles were fairly straightforward - however, it was being amongst other insulin dependant diabetics that benefitted me the most.

Steven - sounds like you're doing great mate. Sometimes having a reason to motivate you, like your kids, is a massive help.

Cleo - Wow, very impressive averages you have there! My main problem is snacking...I just cant help myself!! If I could limit my food intake to the 3 main mealtimes I'd be fine lol.

Nigel - I'm sure age plays a big part too. As we get older we start to question our mortality.

Cheers

Leon