30 yrs old, Type1 since 18mths old, becoming a nightmare diabetic

[kwh]

Hi everyone

I'm 30 years old, was diagnosed Type 1 at around 18 months old. When I was a kid and in my early teens I was the doctor's dream - the example they told others about for good diabetes control. Then I became a teenager...

I didn't drink heavily as a teen, but as I got older I had some problems in my life which led me to drink more and more and generally not look after myself. Not eating properly, 'forgetting' to do blood tests, not really caring about insulin and viewing my diabetes as a nuisance and something to avoid rather than manage. I think I started to 'manage' my diabetes using Lucozade. I would have an injection, then drink some lucozade instead of eating. Have never been a big eater since my teens and while I'm not underweight, I'm certainly quite thin for my age. I'm around 70kg normally, but this frequently falls to around 67kg when I'm having a bad patch - like now. I'm 5"11 btw.

When I'm having a bad patch, it tends to get very bad. My mid-twenties were a scary time least of all for me, but more for those around me who frequently had to call ambulances for me due to horrific hypos. To be honest sometimes when I'm feeling honest I wonder how the hell I'm still alive. My eating is a problem, I don't eat enough and this has been a problem since I was young. When I go home, my dad and mum try to feed me up and I just can't eat as much as them, I try hard but I get full so quickly. I know I don't eat enough, which is part of the reason I always carry a bottle of lucozade with me. I know that if I don't eat, I can top up with lucozade and I won't have a hypo. (My insulin dosages are generally quite low).

Some people will be reading this and saying "what an idiot", "grow up" etc etc and you're right in a way.

I have had a bad spell for the last few months. In the summer, I went on holiday and ended up in A&E in Hong Kong after collapsing on a street by myself. That was the first incident. Since then, I've had 2 more ambulances called for me. One ended up with me falling down a tube escalator and fracturing my collar bone. And this morning, I had another at a train station. In all but one of the ambulance calls I was alone and random people kindly helped me out.

It's so far beyond ridiculous, I just have constantly been frankly p**sed off about being diabetic and I do try hard to eat more but it's difficult for me. Appetite is a problem, I very rarely feel hungry.

Having a bit of a lengthy moan here, I hope it doesn't seem like I'm attention seeking, that is not the case. I just need to snap out of this and get a grip of myself. I'm waiting for a letter to get an appintment with a specialist diabetic nurse to get better control.

Has anyone else been diabetic for a long time (i.e. can't remember not being diabetic) and had similar issues? Clearly I'm in a bad way and not manging this in any way shape or form and I need to get it sorted out.

Please send your advice (also feel free to be strong with your words, I need it - no one around me knows how bad it is, I keep it a secret and hide it well).

That was a ramble..

Thanks
Kev

 

[noblehead]

Hi Kev,

You've been open & honest and I hope by putting into words and sharing it on the forum it has helped somewhat, but your doing the right thing getting professional help & support as there's no point in struggling alone.

Best wishes and hope all turns out well.

 

[lizdeluz]

Hey, sorry to hear about these problems @kwh! I've had diabetes for 30 years but was diagnosed aged 29 so my experience is different, but I did go through a time which sounds similar to yours in that I tried to force diabetes onto the back seat, just because everything else seemed more frenetic and needing greater priority: ha!
The lucozade may not be helping: although it's giving you the glucose fix, it's very gassy and would certainly make me feel bloated and unwilling to eat proper food. Drink water? Use glucose tablets to stop the hypos - I don't like them so I never overdose on them, that might work for you too? I reckon you could use some counselling so that you talk about what's going on, like you've done here, but with someone who will listen and respond immediately to what you're saying. CBT counselling helped me with my diabetes at one point. It's not invasive, it's just talking after all, but it can help to sort things out and help you to treat yourself better.
Well, the hypos and subsequent accidents have got to stop, kwh! You're worth it.

 

[pinewood]

Sorry if this is patronising advice for a seasoned diabetic, but have you done a basal test and made sure your basal insulin dosage is correct?

As you of course know, it's not normal to be having debilitating hypos like that .... if your basal level is correct then you need to concentrate on carb counting and adapting your insulin dose to what you'll be eating .... given recent events it sounds like you should play it more cautiously until you're back on track and try to under rather than over estimate your bolus to avoid any more hypos of that nature.

Best wishes and good luck.

 

[kwh]

Thanks everyone for your quick replies. @lizdeluz - you're right, it has to stop. I hadn't thought about the gassy nature of lucozade. I used to use Dextrosol, I will try them again. Lucozade is sort of a security blanket.

@noblehead it has made me feel better. I don't share enough about this stuff!

@pinewood it's not patronising at all, it's a wake up call for me. I haven't done a basal test and frankly I don't even knwo what that is? I recently increased my bolus on GP's advice because ironically, my HBA1c was high.

 

[lizdeluz]

Your HbA1c was high because you've been doing a roller coaster ride of hypos followed by the highs that can be caused by going hypo. I don't know of course, but maybe you are over-treating your hypos, adding extra sugar to the emergency sugar your body supplies when it's hypo. So you are probably getting lots of highs as well as lots of lows and a resulting high HbA1c. No wonder you feel unwell and fed up.
Eat real food. Rest if your blood sugar is very high, rest if you go low, and keep checking to see that your blood sugar is in the safe zone, not lower than 5 for the time being, no higher than 8 if possible.
@noblehead can give you the links to help you with basal testing. (I know that because I'm a newbie to basal testing and have just started doing it on his advice!)

 

[donnellysdogs]

Hi

Eating for me is a problem too.. Not by choice, and neither is your lack of hunger....some of us don't get hunger pangs to eat. I certainly don't.

What I do eat though is healthy and minimal carbs. This means for minimal injections.

I don't eat a lot. Just one meal a day... But I ensure I have enough of the essential healthy fats and food to keep weight on.

I admit at the moment it is a bit of a problem but for 30+ years it kept me a healthy weight. I have a different non diabetic problem at the moment so have lost a few more lbs...

However, to keep my levels good.. And they are good.. It is essential to test your basal rates.... More details will follow from others about this I suspect. I personally have two split doses of levemir morning and night. I also have to have a very small bolus on getting up without any food... (Thats unique to my body though) and then I do not eat until 6pmish. Then I have mixtures of salads with salmon or cod, lots of olive oil dressing, a small fresh fruit salad, walnuts and 2 sq dark chocolate. Recently I have curries with cauliflower rice (not actual rice) and huge amounts of veg or casseroles with humongous amounts of veg with the usual walnuts and dark choc.

I also have some vitamin tablets.

The thing is if your long acting insulin is correct then you should not necessarily need to eat...or you should be able to eat when you want to.

The thing is though that you need to keep to good healthy food.... And it sounds as if you know that..

Flexibility with injections and eating is possible on MDI.

Good luck... You've woken up.. You've come to the right place for help and support..

 

[Adam29]

@kwh Hi Kev, I'm 28 and was diagnosed when I was 6, so like you can't remember a time without having diabetes. When I was young I relied on the help from my Mum as she was given all the advice from the doctors etc. I've never had amazing control, with my best Hba1c being 8% the year before last. I moved out with my girlfriend last year and concluded it was time to get better control of my diabetes and general fitness. I used to rely on lucozade like you - carrying 1 or 2 bottles with me where ever I went and kept my blood too high as I was scared of hypos.

I was recommended some books from this forum which Kickstarted the change. The first book I'd recommend is Dr Bernstein's 'The diabetic solution' it's got everything you need to know and has some great information. The second book is 'Think like a Pancreas' which goes into detail about basal testing which I found very helpful.

The second thing I did was to follow a low carb diet which means I don't have to Inject as much bolus insulin. (I now inject for protein at half the dose of carbs) Check out the 'Diet Doctor' website for LCHF (low carb high fat) This may not be for you, however I still suggest thinking about lowering the amount of carbs you eat to help the roller coaster.

My Hba1c has dropped from 8% to 7.1%. I aim to get this within the 6% figure for my next test.

In regards to lucozade, I also found that tablets (such as Dextro tablets) worked a lot quicker than the drink and are also a lot more predictable. For instance, for myself I know that 1 tablet raises my blood levels around 0.75. If I was 3.2 I'd take about 2-3 tablets to bring me back up. They're a lot easier to carry round too.

I'm not expert but have certainly learned a lot in the past 6-8 months and this forum is so helpful.

As others have mentioned the basal test is worth doing as a starting point.

Good luck!

Adam

 

[bigboi]

@kwh Hi Kev, I'm 28 and was diagnosed when I was 6, so like you can't remember a time without having diabetes. When I was young I relied on the help from my Mum as she was given all the advice from the doctors etc. I've never had amazing control, with my best Hba1c being 8% the year before last. I moved out with my girlfriend last year and concluded it was time to get better control of my diabetes and general fitness. I used to rely on lucozade like you - carrying 1 or 2 bottles with me where ever I went and kept my blood too high as I was scared of hypos.

I was recommended some books from this forum which Kickstarted the change. The first book I'd recommend is Dr Bernstein's 'The diabetic solution' it's got everything you need to know and has some great information. The second book is 'Think like a Pancreas' which goes into detail about basal testing which I found very helpful.

The second thing I did was to follow a low carb diet which means I don't have to Inject as much bolus insulin. (I now inject for protein at half the dose of carbs) Check out the 'Diet Doctor' website for LCHF (low carb high fat) This may not be for you, however I still suggest thinking about lowering the amount of carbs you eat to help the roller coaster.

My Hba1c has dropped from 8% to 7.1%. I aim to get this within the 6% figure for my next test.

In regards to lucozade, I also found that tablets (such as Dextro tablets) worked a lot quicker than the drink and are also a lot more predictable. For instance, for myself I know that 1 tablet raises my blood levels around 0.75. If I was 3.2 I'd take about 2-3 tablets to bring me back up. They're a lot easier to carry round too.

I'm not expert but have certainly learned a lot in the past 6-8 months and this forum is so helpful.

As others have mentioned the basal test is worth doing as a starting point.

Good luck!

Adam

Can deffinetly relate to being scared of having hypos so you keep yourself high! Glad i wasnt the only one doing that . Im now taking control , im moving onto lantus from novamix today actually. I now find myself only high really at morning time... Tell me im making progress somehow? thanks for sharing adam .

 

[Juicyj]

Hi Kev,

Don't be so hard on yourself and don't worry what other people think, it's what you think that's the important bit, you have come to the most sympathetic site on the web, no one's here to judge you but as a collective type 1 family we care about everyone who posts here as we know what it's like.

My personal advice is do as @Adam29 as said above, become an expert, read up and start taking control of your diabetes, it's never too late or too early ! The more you understand and know then the more confident you will become. Everyone here will offer advice and support, you're not alone

 

[tim2000s]

Hi @kwh, I'll echo @Juicyj 's comment.

You are the person best placed to be the expert in your diabetes. There's tons to read both here and on the web, and lots you can learn. As you learn more, hopefully you'll gain confidence that you can manage yourself more easily and ask the questions you need answered of health care professionals.

We're always here to help!

 

[noblehead]

@noblehead can give you the links to help you with basal testing. (I know that because I'm a newbie to basal testing and have just started doing it on his advice!)

Yes no problem, the first one explains what the role of basal insulin is and why it is important to get the dosage right, the second link explains how to do a basal test in different time frames and uses bg measurements of mmol/l instead of mg/dl (as in the first article):



http://integrateddiabetes.com/basal-testing/

http://www.salforddiabetescare.co.uk/index2.php?nav_id=1007

 

[tim2000s]

I like this one for basal testing. It goes into a decent amount of detail about what to do afterwards as well as the testing process: https://mysugr.com/basal-rate-testing/

 

[kwh]

Wow! Thanks so much for all the advice & replies, I have briefly logged on at work so can't reply individually now but thanks @noblehead for the link, I will check it out.

As @donnellysdogs said, I've woken up and my aim now is to get back the level of control I had 15 years ago. When I get more time at home i'll check out all these replies properly

 

[donnellysdogs]

Keep it up @kwh... You can do it..

 

[PseudoBob77]

Hi Kev,

Well everyone has a turning point, sounds like you want to get this bull by the horns because your fed up with it.

If you've lost understanding of it all build up from scratch, get a phone app and start learning what the hell is going on. If you control it you can mould it around your life rather than it dictate to you.

It can be a psychological thing where we tend to bury our head in the sand once in a while. I hate diabetes but will never let this get the better of me, if it's something within my control then thats my responsibility.

You gotta self educate, no doctor has ever done that, they give you the starting blocks, a perimeter/principles to work within. They don't know what we do day to day, when we go into the docs/consultants office we just another statistic and tick box, they got 15 minutes to tell you how to manage the other 365 days. That doesn't quite figure, so you got to learn about you and how everything interacts with diabetes. If you take an analogy of how a sports person trains to reach optimum performance and fine tune their lifestyle then we as diabetics must do the same in order to achieve.

The thing is, is that it is **** hard work, once you get that and start figuring all these little quirks out you get on with your life.

One thing I will say, respect your condition regardless of anything else in your life. Go party, drink, smoke, eat junk food if you want, but take those blood tests, do an injection and grab another beer, bottle of red wine or run a marathon.

Chris

 

[palind]

Kev..I m a diabetic for 26 years starting at the age of 3...yeah..its a problem but trust me,we can manage it..diabetes is not a death sentence...its a silly problem of our body,by maintaining good bs control,we can tackle it.....(can anybody help me to leave the habbit of smoking??? )

 

[kwh]

Thanks again everyone for the replies. It's been almost a week since I last replied and I've been fine, apart from a minor low sugar at the weekend, after a Xmas party. Luckily I recognised the symptoms and sorted it out.

Since my first post last week, I've been trying to have a more regular diet. So I'll explain if you don't mind:

BREAKFAST- I've been having breakfast at home each day before I leave for week. Speed is of the essence... I have a 'tendency' to sleep in and end up rushing. So, before bed I've bee laying out cereal in a bowl ready to fill with milk the next day so i can eat it while I get dressed. Not ideal, but an improvement on my previous behaviour. Normally it's Weetabix, sometimes bran flakes but always with Canderel on the top. This is important for me because normally I'd either skip breakfast or wait until I got to work which is a 1-hour commute.

LUNCH- canteen is always mobbed.. wish I had the patience to wait for a hot meal! I don't though, so I;'ve been continuing with my normal lunch which is generally a sandwich & crisps, and a can of diet coke.

DINNER- I live alone, don't cook much. Heating something in the oven is too tempting and I'm unlikely to change this anytime soon. But I've been looking at the nutritional info etc and checking sugars before bed (they're generally higher than I'd like still).

SNACKS- don't eat many. If I do, it's likely to be fruit (grapes, Belvita biscuits).

I've stopped with the Belvitas now.

I've sat here tonight for a good hour at least googling things like "diabetic menu ideal" and getting LOADSS of conflcting advice so have given up. Has anyone here got suggestions for:
- Smoothies for breakfast - I got a smoothie maker and would like to hear if anyone knows recipes of ones I could make before bed, put in fridge, then drink in the morning
- Dinner - I'm not a lazy person, but after work I'm generally tired and stressed out and basically have a 'cant be bothered' attitude but this needs to change.

Essentially I guess I'm asking people who have time to tell me what they thing a 'good' daily menu for a diabetic is. Any suggestions would be ,much appreciated.

If you've read this to the end thanks, it's a bit of a ramble!!

 

[kwh]

Kev..I m a diabetic for 26 years starting at the age of 3...yeah..its a problem but trust me,we can manage it..diabetes is not a death sentence...its a silly problem of our body,by maintaining good bs control,we can tackle it.....(can anybody help me to leave the habbit of smoking??? )

Totally agree it's not a death sentence - I view it as a nuisance, but this isn't helpful either of course haha

 

[kwh]

Hi Kev,

Well everyone has a turning point, sounds like you want to get this bull by the horns because your fed up with it.

If you've lost understanding of it all build up from scratch, get a phone app and start learning what the hell is going on. If you control it you can mould it around your life rather than it dictate to you.

It can be a psychological thing where we tend to bury our head in the sand once in a while. I hate diabetes but will never let this get the better of me, if it's something within my control then thats my responsibility.

You gotta self educate, no doctor has ever done that, they give you the starting blocks, a perimeter/principles to work within. They don't know what we do day to day, when we go into the docs/consultants office we just another statistic and tick box, they got 15 minutes to tell you how to manage the other 365 days. That doesn't quite figure, so you got to learn about you and how everything interacts with diabetes. If you take an analogy of how a sports person trains to reach optimum performance and fine tune their lifestyle then we as diabetics must do the same in order to achieve.

The thing is, is that it is **** hard work, once you get that and start figuring all these little quirks out you get on with your life.

One thing I will say, respect your condition regardless of anything else in your life. Go party, drink, smoke, eat junk food if you want, but take those blood tests, do an injection and grab another beer, bottle of red wine or run a marathon.

Chris

Thanks PseudoBob77, I am indeed taking the bull by the horns. Can you suggest a phone app I could download?