Help and support needed

[kkma0706]

Hi everyone,

This is my first post and I feel like I am taking a positive step just reaching out for support and admitting that I am struggling. I was diagnosed as presumed Type 1 in August 2016 at age 35 as I was in DKA and hospitalised for 4 days. I have a strong family history of type 2 but had a normal GTT during pregnancy in 2011. I had severe and sudden symptoms for a week before diagnosis, severe thirst but dry mouth and passing huge amounts of urine frequently. I am very overweight but lost nearly a stone in a week leading up to DKA. My HbA1c was 97. I was started on Lantus and Novarapid, basal bolus regime and metformin. Within 3 months my HbA1c was down to 48 and I felt great. I maintained that for about 12 months and in that time all my test results came back negative (GAD, IA2A) and my C-peptide was good. So, I was re-diagnosed as ketosis-prone Type 2 and we tailed off the insulin. To cut a long story short, I am now back on my basal bolus regime after trying a number of things including Trulicity and empagliflozin and ending up in DKA twice more. My weight has gone up and I am stuck in a negative cycle of eating, hunger and increasing amounts of insulin-my diet is poor and I don't really exercise. I feel tired a lot and my mental health isn't the best, I feel guilty, sad and angry but most of all I want to change my life so that I am around to see my daughter grow up. I haven't had the best support but I don't blame anyone else, it's my fault I am not taking this seriously. My latest HbA1c was 76. I would like to try LCHF and see if I can improve my diet, lose weight and reduce my insulin requirements and I have some ideas of what to do but I would really like support and to know how other people keep motivated. I have done a lot of reading and I am well aware of the consequences of not getting on top of this. I am lucky so far that my eyes are fine and my kidney function is fine but I do have some tingling in my feet and get thrush a lot. I worry about the future and would really appreciate any support and advice you can give. Thank you.

 

[Inka]

Hi @kkma0706 Sorry you’re struggling. It’s not easy and it’s natural to feel down. It’s also hard to climb back up as each thing feeds into another.

For me, the best daily motivation is not feeling crap. High blood sugars make me feel horrible.

If I was you, I’d focus on slowly but surely losing weight as I think that would help your control and make you feel more positive. I’d also increase my exercise - even walking helps.

Your basal/bolus regime will give you flexibility to make changes. You’ll need to change your diet gradually so you can adjust your insulin as you go along. Can you give us an idea of your current blood sugar results and diet? No need to be embarrassed if your diet isn’t the best. You won’t be the worst and we all understand how hard it is sometimes.

 

[kkma0706]

Thank you Inka, yes I do feel terrible most days and look forward to feeling better-my current weight is 123kgs but I've decided that's the highest it's ever going to be! My fasting blood sugar has always been high, very rarely under 10, mostly around 12-15. If I don't eat breakfast, my blood sugar goes up so I eat something portable in the car on the way to work like a banana and rice cakes or a sausage roll, at the weekend it's more likely to be toast or croissant, maybe eggs or porridge, for lunch I usually have a sandwich, panini or salad with crisps and fruit, and for dinner I rely a lot on pasta, but eat a good range of fish, white meat and vegetables. One of the worst things is driving home from work, I'm starving and can eat biscuits, crisps, etc. I only really drink water or sugar-free soft drinks, some tea and no alcohol. I'm so embarrassed, it's obvious when I write it down but somehow I don't notice how terrible it is! My blood sugars range from 8-15 most of the time, can spike up to 20 and I do get the occasional hypo under 4 (my hypo symptoms seem to start under 5). I'm sure that's the worst!

 

[Annemarie]

Oh my dear kkma so sorry to hear you have had such a difficult time. You are now amongst friends with experience and so much knowledge around diabetes that I hope you can soon relax, gain confidence and managing skills. In addition on here are people like me, only 18 months into it and still getting confused but much much happier about my efforts and now able to ignore the guilt I used to feel for getting it wrong most of the time all this is since joining this forum. I can’t offer advice but I’m always happy to chat if you want to off load. Good luck my dear and hang in there as you slowly edge forwards

 

[kkma0706]

Thank you Annemarie, I actually feel a bit better just having posted and admitted what is happening and feel more positive that I can make the changes I need to.

 

[rebrascora]

Hi kkma0706 and welcome from me too.

So pleased you have found the forum because having the support and experience of people who know the everyday difficulties of managing diabetes and coping with dietary changes and finding time for exercise, makes a huge amount of difference to how well we cope. I would certainly not be in the position I am now without the help of the fantastic members here who have helped me hold onto my sanity as well as steered me through the complexities of diabetes management and helped me find strategies that work for me.
What you have to realise is that we are all different and what works for one person may not work for you, so there will be an element of trial and error before you find your game plan. Learn from everyone and pick and choose things which resonate with you.
Also try to find time for a daily walk. Set yourself a really easy target to begin with like 5 mins round the block after dinner. Do that every day for a week, rain or shine so that it becomes a habit, then work on increasing the distance or change the route to include some steps or a hill or just walk a bit faster so it gets your heart pumping and your breathing a bit deeper.

As regards diet I don't think yours is too bad but there is room for improvement. Not sure I would have dared to post (or even tally up and admit to myself what I used to get through) but the important thing is that I have changed and I can't tell you how much better I feel. LCHF works for me and what amazes me most is that I just don't crave carbs anymore or even feel hungry. It is really very liberating. I still enjoy my food, but it is no longer an all consuming itch that needs to be scratched. Two meals a day seems to be enough for me now most days and I do far more exercise than I did before... and I was quite active pre diagnosis. As others have said, you are best making slow steady changes. Maybe start by ditching the biscuits and crisps in favour of low carb snacks. Then after a week or two, look at lowering the carb count of one of your meals.... breakfast is a good choice because we tend to eat the same thing for breakfast most days, so easy to get into a routine of eating lower carb. We also tend to be more insulin resistant in the morning so lowering carbs on a morning can have a bigger impact than other meals. You will of course need to reduce your insulin dose along side the reduction in carbs and test more frequently to keep yourself safe.

It really helps to set yourself very small achievable goals because the mental reward of hitting your target spurs you on. Don't worry about how small or trivial the initial goal is, just set it and stick to it. It might be to only allow yourself one biscuit on the way home and nibble it really slowly and think about how good every little morsel tastes, rather that just scranning it and reaching for the next one as I used to do, without really stopping to think.

Anyway, just some ideas to get you going. It may help to document on the forum what you plan to do as it can help to keewp you on track if you have publically declared your intent and we can all celebrate with you when you achieve your little targets..... we like to celebrate!! But we are also here to help support you when you fall off the wagon occasionally, as we all do and to help you get dusted off and climb back on.

 

[Annemarie]

@kkma0706 It’s a great feeling when you understand that it’s your diabetes and feel you can accept ownership. The hospital support made me feel I had to check with them to do anything different, nobody mentioned vary the dose etc. I still get it wrong (ate pasta last night and zoomed up high for 7 hours) I know I shouldn’t have done it but today I’m not beating myself up about it. When I do something like that I call it a poke-in-the-eye-to-Diabetes and get on with a new day

 

[Inka]

Hi again @kkma0706 Well, you’re definitely not the worst and your diet isn’t awful. Most importantly, you’re aware of some changes you can make eg stopping the biscuits, and sound committed to changing.

I’m Type 1 not Type 2, but I’d look at your basal dose first if you’re always waking high. You might need a little more basal insulin for now. As you’re probably very well aware, because you’re on insulin you can’t suddenly stop eating carbs because you might have bad hypos and it might even be dangerous. What you’re aiming to do is gradually reduce your carbs along with your meal-time insulin. Have you done any kind of carb-counting course? I mean learning to adjust your insulin according to the carbs you’re about to eat?

Obviously stopping the biscuits and crisps is a good first step. Try to think of a substitute eg a hot drink and a small non-carby snack (unless you’re low)? Sugar-free sweets to suck when driving? Having a slightly later lunch? Taking a Tupperware of raw veg and a small pot of hummus as a dip?

Think of this as a project. It’s going to take a little while but there’s no reason why you can’t enjoy making some positive changes and you’ll be repaid a hundred times over if you can improve your health. We’re all here to support you

 

[kkma0706]

Thank you all so much for your replies and support, so here are some ideas and changes I am going to make from today. For breakfast, I am going to make some hard-boiled eggs the night before and have 1 or 2 on my way to work, then I can have a yoghurt (is Total Greek yoghurt ok?) with some berries when I get there. For lunch, I am going to stick with a sandwich as it's easier but make it myself with wholemeal seeded bread, lean meat or smoked salmon, some raw veg/salad and crisps (I can't stop my crisp addiction, but I'll get some small bags of the lowest carb I can find) and sugar free flavoured water or sparkling water. I won't stop on my way home so that I can't buy rubbish (would a small pack of nuts be ok?) and it will mean I get home to my daughter sooner! Then for dinner I will eat more fish and veg and try and reduce pasta/potatoes/rice and takeaways/ready-meals. I won't snack in the evening, what about sugar-free jelly if I feel I need 'a treat'. I'm not a big fruit fan but I like berries. And I am going to stop parking so close to work so that I have a 15 minute walk at the beginning and end of the day for exercise. Does that sound reasonable-thank you so much for inspiring me-I will update in a few days to see how my blood sugars have been and I will weight myself once a week and update here too!

 

[Annemarie]

That all sounds very well organised, at this stage some compromises will help ease you into your new regime - You’ve given me some ideas too!

 

[rebrascora]

That seems like quite a lot of changes at one go. I would be inclined to break it down a bit and just do one step at a time.
I am a little concerned about your morning routine with breakfast. Will you have the eggs and then bolus for the greek yoghurt and berries when you get to work? Just worried you might bolus and then set off in the car without any carbs inside you, particularly if you currently have a regime of taking bolus insulin at home before you go to work.... we don't want you hypoing whilst driving. Also technically you should probably not be eating whilst you are driving. People have been done for it in the past.
Be aware that a bit of natural fat in tour died is beneficial when you are cutting down on carbs and in fact low fat products are often higher in carbs than full fat ones so I always buy creamy Greek natural yoghurt to have with my berries and add some mixed seeds to bulk it out. The fat will keep you feeling full for longer. Not sure what Total is but it pays to look at the fat content and opt for the higher one.

 

[kkma0706]

Thanks, good points! I will have the egg/eggs before I set off, my fasting reading is high and my drive is only about 20 minutes so if I bolus for the yoghurt/berries just before I leave I'm hoping that will be ok but I will be sensible. I will look out for some full fat options too.

 

[Flower]

Hi @kkma0706 and welcome, glad you've joined us I'm sorry you're having a tough time and struggling.

Breaking things down into bite sized (sorry!) problems is the best way I've found instead of having a head full of conflicting worries and feeling overwhelmed with the whole great big swirling mess of what to do for the best or where to start. Keeping a record of what you've eaten and the results you've got- good /bad/indifferent- is a clear way to see what's already working and where things need changing.

High blood sugar is such a vicious cycle, it makes you feel rubbish, hungry, sick, cross about everything and once you start to get more stable lower blood sugars it is amazing how much better things seem and how much of an incentive it is to carry on. As already said go carefully with reducing foods and portions when injecting insulin, slowly slowly is the best approach with more testing.

Can you get some sugar free gum to chew in the car to keep you busy likewise for snacks Babybel/ cheese pieces are my go to, they don't affect my blood sugar, fill me up and stop me looking for other carby stuff to nibble!

Any positive changes you make all count towards more stable control, more in range results and the changes do start paying dividends pretty soon. Put the difficult time you've had behind you and focus on making small improvements every day. It is doable and worth every bit of effort - I've done it myself with the help of this forum by reading what others do and giving things a try! Best wishes.

 

[kkma0706]

Thank you, yes cheese is a great idea-I've already seen some improvement today after a more sensible lunch, I injected about half the insulin I usually need because it was much healthier and my blood sugar almost 2 hours after is 9.8 (7.1 pre-lunch), which I know is still high but it's much better than the double figures I would have had. I can do this!

 

[rebrascora]

Oh and yes, sugar free jelly works well as a treat. You can make it with frozen berries in it and have it with yoghurt either as a dessert or breakfast.
Do be careful if you drive after your bolus. Easy to get caught up in traffic or an accident and forget that you have insulin on board and no carbs, particularly if you have eaten something like eggs which will make you feel full, so not hungry. I once left the house after bolusing for breakfast and only remembered 1.5 hours later when I was out in the middle of the countryside with 2 horses and I had forgotten my bum bag containing my hypo treatment and testing gear because I had taken it off to use the loo before I set out and forgot to put it back on. I got home on 2 rather dirty furry mint imperials that we found rolling around in my partner's pocket which had been destined for the horses.... sorry guys!... but my need was greater than theirs.... Just saying, it's easy for it to happen, so take care!

 

[kkma0706]

Oh dear, yes I didn't think of that-to be safe and in case of traffic delays, etc I won't bolus until I arrive at work and am about to eat! Thanks again.

 

[Annemarie]

I keep Dextrose lozenges in the car, they store easily and are fairly quick

 

[kkma0706]

Got to be better than jelly babies, I eat 4 but then scoff the whole bag and shoot up the other way!

 

[Annemarie]

Oh dear that’s not a good idea. Although if necessary I happily take the orange flavoured Dextrose, I can’t say I like them so never could be tempted to take more than I need. My diabetic nurse said if my score is under 4 take 3 or 4 of them, they also break in half easily

 

[helli]

crisps (I can't stop my crisp addiction, but I'll get some small bags of the lowest carb I can find)

I have found the lighter (in weight) crisps such as quavers and skips are amongst the lowest carb per pack with about 10g . That is probably because there is less weight in each pack but I can limit myself to one pack.

I keep Dextrose lozenges in the car, they store easily and are fairly quick

I use GlucoTabs. I think they are called Lift now. I changed because I found soggy or solid packs of dextrose lying around when I had opened them and not got around to finishing the paper packet. GlucoTabs/Lift come in plastic tubes so don't go off. They may seem a little more expensive but I only bought two tubes and since have topped up my supplies with large tubs I buy in bulk from eBay.