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Purls of Wisdom

Purls of Wisdom

Well-Known Member
Relationship to Diabetes
Type 1
I wonder how many diabetic individuals read unvarified online information and believe each and every word or suggestions?

I have dug myself a hole, information overload and massive confusion.

Any suggestions how to claim back control of my diagnosis and understanding in order to live somewhat normal life, which is tough as it is?

Hats off to folks who have learned ways to deal with Diabetes!

Thanking you in advance.
 
Welcome back, we haven't seen you in a while. How have you been getting on; did you manage to put any of the suggestions you received here into practice or manage to get more support from your diabetic team.
People have to learn to be selective about the sources of information because as you say there is a lot of conflicting views.
At least the people here are talking from personal experience but even so can only say what works for them.
To a large extent you have to become your own expert and be proactive and responsive to change, and if it doesn't work try something else but importantly keep a good record of what you do and what you change so you don't forget, and it can provide evidence for what you have tried to show to your diabetic team.
 
Think sometimes you have to take what you read with a pinch of salt, not everything is as it seems.

Regards information overload, that is something you need to step back from as it can drag you down if you let it, so search for info on credible sites & leave rest alone.
 
Hi and welcome back.

Sorry to hear you are struggling with unreliable information. I only ever come here to this forum, because I know it is tried and tested advice from people who have been there and got the T-shirt and it is peer moderated to a large extent, so any erroneous information is usually called out pretty quickly. You do have to learn to spot what is relevant to you and your situation/diabetes and what is less applicable, or be prepared to try different things, basically experiment on yourself, to see what works and if it doesn't, discard it and try something else.
I think your situation is a bit confusing because your diagnosis was not straight forward if I remember rightly and you were on insulin and I think, believed to be Type 1 but I see your profile shows you as Type 2.
Are you still on insulin? .... Or have I imagined all that?.... if so apologies 😳
 
Hi @Purls of Wisdom
I stick with information from Diabetes UK, NHS and US NIH websites (and links from them), plus making great use of this forum and links people provide via it - the forum is moderated, unlike the world wide web as a whole! Exception is for nutrition info, such as carb content of specific foods, where I'll assess what's said on various websites, and make a judgement.
Hope this helps, and good luck in getting to grips with it all.
Regards, Nick
 
Any suggestions how to claim back control of my diagnosis and understanding in order to live somewhat normal life, which is tough as it is?

Yes - limit your information sources and keep things simple. Use the Diabetes U.K. site and this forum and get a book too, if you feel you’d like something to dip into.

To keep things simple, don’t try to find out every single thing. Stick to the basics. Get familiar with those basics. Don’t overthink things and don’t try to add extra information until you’re ok with the basics and have been for some time.

You can live a pretty normal life, but during this time of learning, again, keep things simple. Stick to the same breakfasts and lunches, and one of a very small number of evening meals. That way you’ve removed/reduced one variable. Give yourself plenty of time. Gradually you can broaden that a little.
 
Nice to see you again @Purls of Wisdom

Sorry to hear you’ve been struggling with a bit of information overload :(

I agree with others - best to stick to reliable sources such as Diabetes UK and the NHS websites, and to recognise that everyone’s diabetes is unique, so suggestions, hints, and experiences from people with diabetes may not be appropriate for you as an individual.
 
As others have said , stick with official nhs sites and the Diabetes UK site and forum.
I too have been guilty of using " Dr Google " to search for information and understand how overwhelming it can become.
Kind regards
Martin
 
When googling anything medical I’d stick with NHS, hospitals or charities which have been set up specifically to support the condition you’re interested in. They should have accurate information which is presented in a helpful and not scaremongering way. Universities and medical journals will probably be too scientific for most people. And stay away from anything American, I’m not suggesting that the Americans don’t know what they are talking about, but they have a completely different healthcare system, use different measurements for some things like blood sugars and carbs, and sometimes different terms which can be confusing. Once you’ve found a source that you like, such as Diabetes UK or similar, try to stick with that and not confuse yourself by reading loads of different sources. And remember, everyone is different, there are different types of diabetes and many different ways of dealing with them. Not all approaches will work for everyone.
 
Purls of Wisdom said:
I wonder how many diabetic individuals read unvarified online information and believe each and every word or suggestions?

I have dug myself a hole, information overload and massive confusion.

Any suggestions how to claim back control of my diagnosis and understanding in order to live somewhat normal life, which is tough as it is?

Hats off to folks who have learned ways to deal with Diabetes!

Thanking you in advance.
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Hi I struggle with this especially chatter from American sources as I believe because they pay for their healthcare that often they clutch at hearsay/straws if they have limited health care and it can be dangerous.
It’s why I joined diabetes U.K. as a member as their info is reliable and I stick to nhs sites … Nick says similar lower down, it’s the best we can do to protect ourselves and diabetes uk has its helpline as well.
Hope your doing ok x
 
Thank you every one for putting my mind at somewhat peace.

Does any one else also feels that most of the info is directed at T2DM sufferers?

I was looking for a healthy and comforting hot drink option to help me with my hunger pangs thru the winter nights. None out there I have come to realise sadly. I know milk can easily be one but I was looking for something more satisfying. Any suggestions?

Recently, I am having hypos every day, sometime multiple times in a day. The consultant had specifically asked to try to avoid the same. I am not doing anything different than before. Same strict carb counting, insulin ratios and boring meals. I wish someone could advise me of suitable snacks in plain simple words. "You can eat anything since you are taking insulin" does not work for me.

The only thing different is that I am a little bit relaxed about having T1DM and am able not to worry too much about hypers. Took me ages to accept that I have an illness which is here to stay.

I get this horrible feeling that DSN and the Dietian are about to lose their patience with me. I just fail to understand and retain the information. I have been a worrier all my life and it is too late to change that now especially since I have a real reason to fret now. I also feel that I have lost my confidence in decision making. I am OK to follow when told exactly what to do as long as I do not have to decide for myself and the prime example is all this chopping and changing number of insulin units and still having varying outcomes. No consistency what so ever.

Failing all I ve also been told that I could be put on a different insulin, twice a day, without having to carb count but it will take away the freedom of corrections. Can someone who has experienced this scenario, share their views please?

I hope against all the odds that all this will finally dawn upon me one fine day!

Massive thanks again.
 
Re the hypos, sometimes your own insulin-producing cells recover a bit temporarily and you find your injected insulin needs decrease. If you’re having lots of hypos, reduce your insulin and/or eat more carbs.

Snacks - carby snacks are a digestive biscuit (10g carbs) or two (20g carbs), an average apple (15g approx) 3 oatcakes plus cheese (15g approx), a flapjack bar 18-20g check the label. If you’re going low you might be able to eat these without insulin.

If you don’t retain information (and I agree that that seems the case, as I mentioned before), write things down in a way that works for you in bullet points eg “Snacks - digestive biscuit (10g carbs), etc”

Consistency - not possible. Forget it. There are multiple things that can affect our blood sugar. Learn what your normal/average result is and then if you get a different result, adjust your actions eg if you’re normallly 8 two hours after breakfast and that works fine for you, but tomorrow you test and you’re 5, then you need a few carbs to push you up towards your normal 8.

If you’d find a twice daily insulin easier, then go with that, but you’d still have to carb count to make sure you were eating the right amount for your dose. It would reduce your flexibility. It also demands regular meal times because the insulin kicks in and you need to eat lunch.
 
rebrascora said:
Hi and welcome back.

Sorry to hear you are struggling with unreliable information. I only ever come here to this forum, because I know it is tried and tested advice from people who have been there and got the T-shirt and it is peer moderated to a large extent, so any erroneous information is usually called out pretty quickly. You do have to learn to spot what is relevant to you and your situation/diabetes and what is less applicable, or be prepared to try different things, basically experiment on yourself, to see what works and if it doesn't, discard it and try something else.
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Just to make my situation a bit clearer, I have been brought up using Homoeopathic meds, where precaution is considered better than the cure. I think my nature to control symptoms stems from there. I find difficult to ignore the fact that the BGs are high and I am supposed to accept that! Not worry about it!!
rebrascora said:
I think your situation is a bit confusing because your diagnosis was not straight forward if I remember rightly and you were on insulin and I think, believed to be Type 1 but I see your profile shows you as Type 2.
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It has been officially confirmed that I am T1 after all. My medical records still say that it is T2.
rebrascora said:
Are you still on insulin? .... Or have I imagined all that?.... if so apologies 😳
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I am on Levemir and NovoRapid.
 
How high are your high levels going and do they come down into range or are they always high?
You should not ignore or accept your levels being high? Who is telling you that? You also have to realize that having 100% in range readings is not sustainable, so an acceptance of going above range occasionally is important and perhaps the odd hypo too. Doesn't mean you are doing anything wrong, it is just the nature of trying to balance BG levels with insulin and food and exercise and illness and all the other things which can affect our levels.

Have you been offered a DAFNE course or other equivalent intensive education course?

Good to hear that you have a confirmed diagnosis of Type 1 now. It might be helpful to go into your profile here on the forum and change it to show you as Type 1 instead of Type 2 as it currently shows.
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Purls of Wisdom​

Well-Known Member​

Relationship to DiabetesType 2

Are you on just one injection of Levemir a day or two?
 
I tend to find information that is too good to be true is untrue.
It's easy to find "facts" to confirm what you want to believe, usually non mainstream, and easy enough to spot as the same little circle of names keeps popping up telling you their book will save you, so long as you pay.
I also tend to dismiss anybody using the title "doctor" if they got it from a PhD in sports.

As said on here, the NHS, this website, well, the actual site, but not all the posts in the forum, as like everything, there is a very broad range of opinions, and while some are indeed excellent, and verifiable, some probably need a bit of checking.
 
Sarahp said:
Hi can’t advise on insulin as am t2 and not starting to next week.
Soup can be comforting and if you make it yourself you can blend to drinking consistency and also control salt content etc, some lovely recipes here https://www.diabetes.org.uk/guide-to-diabetes/recipes I use pulses a lot to reduce potato or flour use.
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I am looking for a hot nourishing drink which can replace the need to eat a supper to keep me afloat all night such as Horlicks light, Ensure, Glucerna etc. etc.

I am a vegetarian. Eat home cooked Soups, vegetables, lentils, pulses and legumes. I find that all those considered good food items come high in carbs. I do not get enough proteins in order to keep me full for longer and I can only eat so many eggs, nuts or cheese. I stay away from potatoes and refined grains.

Please suggest suitable alternatives. Thanks.
 
Now you have officially been diagnosed as Type 1 you should be able to get more support from your diabetic clinic about your insulin doses.
I am not clear about exactly what your insulin regime is now and what doses you are having. Are you adjusting your dose now to take account of the carbs you have in your meal and are you just using finger pricks or do you have a Libre, if not you should ask your clinic. Have you been given a carb to insulin ratio for your bolus insulin and given information about correction doses. What sort of blood glucose levels are you getting. If you could share some of that infromation people may be able to help.
Have you tried the protein yoghurts or Kvarg deserts or the protein nut bars like Nature Valley, shop own or similar.
 
Purls of Wisdom said:
I am looking for a hot nourishing drink which can replace the need to eat a supper to keep me afloat all night such as Horlicks light, Ensure, Glucerna etc. etc.

I am a vegetarian. Eat home cooked Soups, vegetables, lentils, pulses and legumes. I find that all those considered good food items come high in carbs. I do not get enough proteins in order to keep me full for longer and I can only eat so many eggs, nuts or cheese. I stay away from potatoes and refined grains.

Please suggest suitable alternatives. Thanks.
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Hi I am not sure a hot drink alone is enough, would need protein and complex carbs to help stabilise things if your insulin dose is the issue, adjusting the dose might be more prudent if your getting hypos, used to be the case when I was on a long acting injection for t2, hoping a t1 sufferer will see this can give better advise, you could also push to see a dietitian if your DSN /team aren’t helping enough.
Too many high fats proteins will potentially lead to gallstones which then can cause issues with pancreatitis so do agree with you not having too much dairy and gets, I am veggie and been this route, ended up critically ill in hospital as the dietitian wanted me to reduce pulses due to my bowel disorder.
 
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