Frightened of food!

Bewildered

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Messages
128
Type of diabetes
Type 1
Treatment type
Insulin
I am having a difficult time at the moment, much like many people. I’m feeling overwhelmed. After 5 years of being told i am type 2 and arguing that this didn’t fit, i was diagnosed with LADA a bit over a year ago. Initially i had some hospital appointments but these were stopped due to the pandemic and i feel totally abandoned. I had a review 8 weeks ago and was told that the form i submitted for the DAFNE course was never processed or received - hence I haven’t had the course offer... my Lantas was increased and told i would get a call in two weeks to see how i was doing. After two weeks i called the hospital and said i would be available any time in the next two weeks as i had leave, now eight weeks on, still no call. My levels are high, i have hypos, I have put on so much weight - 3.5stone since my near death experience with DKA (BMI 18) that finally made the medics listen and do the test for type 1. Scared to eat, so I don’t, until i eat chocolate... when i am feeling low. Yesterday i had a private consultation with a dietician, i asked for a list of meals so that I don’t have to think about food, just pick off a list and go. I got back a list of different ingredients i may like to try eg flax seeds, change chocolate for nuts and then a few links to recipes on bbc website. What????
As a type 2 I cut carbs but then when i was put on insulin i got so excited i had a banana, and i had toast with marmite! I hate food, i hate thinking about food, i hate that i can’t just pop a pill with full nutrients. I have high cholesterol (5.2 - not high but high for a diabetic), i am anaemic, my HbA1c is 84, i have an under active thyroid (controlled by medication) and probably menopausal for good measure. I am so tired of it all. I keep trying then it all seems too much. I have added more exercise and of course the levels jump around with this too. Please tell me some positive things I can do that don’t feel like a hurdle or mountain.
 

Bewildered

Well-Known Member
Messages
128
Type of diabetes
Type 1
Treatment type
Insulin
Take a few deep breaths. You are not alone. The knowledge, experience and powerful vibes of the forum are with you.

@Jaylee can you find some members who can help and support please? I am type 2 so I can only send vibes and hugs.
Thank you i think i need hugs right now. A year of on off shielding probably doesn’t help, thank you.
 

TriciaWs

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Messages
1,727
Type of diabetes
Type 2
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Other
Were you calculating your carbs when they'd said you were T2? if so that is a good start for checking what you can eat. Then you just add in how many carbs you get for the Lantus dosing and eat to your meter?
Meanwhile do make sure you are eating enough protein, and green veg for the anaemia.
 
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ert

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You should have access to a DN as part of your hospital type 1 diabetes team. You need to phone every day if necessary until you feel confident you are managing. I suggest you write down your blood sugars 5 times a day - waking, bedtime, before breakfast, lunch and dinner. Also a food diary of what you are eating and the insulins doses you are taking. And exercise times and intensity. You can give the DN your data until you are happy you are managing. You will get this sorted, but you have to be pushy.
 

searley

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Hi..

im LADA, so know what its like..

Being LADA/T1 you are may be entitled to a Freestyle Libre on prescription.. the will give you much better insight into what your BG is doing

The first thing you really need todo is get the basal insulin right.. im confident enough to adjust mine myself, and my care team are happy for me todo that.. if you are not confident or happy doing it yourself you can do it with your care team

you can check your basal level by doing an extended fast.. and basically during this time your BG should stay pretty much the same.. if it rises or falls you basal is too low/high

once this is done you can start to work on your bolus injections so eat a known amount of carbs and dose for it.. my starting dose was 1unit for 10g carbs so have something, calculate the dose.. and if after 2/3 hours you are not back to a similar level to pre meal then your level is slightly wrong.. again i adjust myself, but you may want to go through it with your care team

corrections are done a similar way.. when you are slightly high, take 1u and see how much you drop over 2 to 3 hours.. normal starting point 1u for 3 mmol


If you know you are going to exercise, you may want to take less insulin with the prior meal so you are slightly higher for the exercise.. normal starting point 10% reduction

always carry fast acting carbs like glucotabs, incase you go low.. and most t1 will go low..

and test test test.. keep an eye on your BG.. its a legal requirement to test for driving incase you don't know

But its all about getting the dose correct and knowing how to adjust, 10y down the line i still have to change my dose from time to time.. and always carry hypo treatment...

weight can be an issue with insulin as it forces the body to process all the food you consume.. so if you have too much you will gain weight.. so whilst they say you can eat what you like, you still need to be careful about quantity or weight gain will happen.. im very active so can still eat quite a lot, but when im off work i can gain several pounds in a week if im not careful.

push again for dafne, or even in the short term bertie online..

if you have any specific questions you like to ask please go ahead ive been doing it 10 years now.. just remember im not qualified.. just my experience.. so if uncertain.. read further or check with your care team.

And good luck, hopefully you can get back to a point of enjoying food & life with it :)
 
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KK123

Well-Known Member
Messages
3,967
Type of diabetes
Type 1
Treatment type
Insulin
Were you calculating your carbs when they'd said you were T2? if so that is a good start for checking what you can eat. Then you just add in how many carbs you get for the Lantus dosing and eat to your meter?
Meanwhile do make sure you are eating enough protein, and green veg for the anaemia.

I'm not sure I understand this advice, how many carbs you get for the Lantus dosing, ie basal insulin? What do you mean by 'eat to your meter' exactly? Calculating how much bolus insulin you may need per amount of carbs is NOT easy in the slightest as so many other factors & variations come into it. People seem to think it's simply a question of injecting a specific amount of insulin, balancing that with a precise amount of carbs and off you go. The reality can be anything but. A non diabetic's pancreas delivers and stops insulin every second of the day, 24/7, imagine trying to replicate that.
 
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Jaylee

Oracle
Retired Moderator
Messages
18,213
Type of diabetes
Type 1
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Insulin
I am having a difficult time at the moment, much like many people. I’m feeling overwhelmed. After 5 years of being told i am type 2 and arguing that this didn’t fit, i was diagnosed with LADA a bit over a year ago. Initially i had some hospital appointments but these were stopped due to the pandemic and i feel totally abandoned. I had a review 8 weeks ago and was told that the form i submitted for the DAFNE course was never processed or received - hence I haven’t had the course offer... my Lantas was increased and told i would get a call in two weeks to see how i was doing. After two weeks i called the hospital and said i would be available any time in the next two weeks as i had leave, now eight weeks on, still no call. My levels are high, i have hypos, I have put on so much weight - 3.5stone since my near death experience with DKA (BMI 18) that finally made the medics listen and do the test for type 1. Scared to eat, so I don’t, until i eat chocolate... when i am feeling low. Yesterday i had a private consultation with a dietician, i asked for a list of meals so that I don’t have to think about food, just pick off a list and go. I got back a list of different ingredients i may like to try eg flax seeds, change chocolate for nuts and then a few links to recipes on bbc website. What????
As a type 2 I cut carbs but then when i was put on insulin i got so excited i had a banana, and i had toast with marmite! I hate food, i hate thinking about food, i hate that i can’t just pop a pill with full nutrients. I have high cholesterol (5.2 - not high but high for a diabetic), i am anaemic, my HbA1c is 84, i have an under active thyroid (controlled by medication) and probably menopausal for good measure. I am so tired of it all. I keep trying then it all seems too much. I have added more exercise and of course the levels jump around with this too. Please tell me some positive things I can do that don’t feel like a hurdle or mountain.

Hi,

I feel the first thing to do is find out what your Lantus is actually doing through basal testing.
Here is a trusted link on how to.. https://www.mysugr.com/en/blog/basal-rate-testing/

Next would be to work out what your insulin to carb ratio is.

Believe it or not, many modern cook books including some of the recipies on the BBC site have a nutritional value, icluding a carb count. Which can (not only help with choice.) take the headache out of what your bolusing for?

Best wishes.
 

searley

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Retired Moderator
Messages
1,880
Type of diabetes
Type 1
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Pump
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Diabetes, not having Jaffa Cake
People seem to think it's simply a question of injecting a specific amount of insulin, balancing that with a precise amount of carbs and off you go. The reality can be anything but. A non diabetic's pancreas delivers and stops insulin every second of the day, 24/7, imagine trying to replicate that.

This is a very good point.. there is no 'perfect' we are trying to mimic what our body does, and we can only get a 'close match'

lows/hypo's WILL happen as will highs/hypers

so its test test test, and get to know your body and what its telling you.. and carry hypo treatment

even a 'good match' will change day to day.. by mood, weather, stress, etc.. for women, even time of the month will change things..
 

In Response

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3,369
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Type 1
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Being LADA/T1 you are may be entitled to a Freestyle Libre on prescription.
I wish it was that simple.
In England, only 20% of peoplewith Type 1 diabetes are prescribed Libre.
Please take care before raising hopes to someone requesting help.

(small mod edit)
 
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ert

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Being LADA/T1 you are may be entitled to a Freestyle Libre on prescription.. the will give you much better insight into what your BG is doing

:)

There are specific criteria you need to meet to qualify for a FGM/CGM such as using over 8 testing strips a day or being hypo unaware. The reality is very few qualify. Most people self-fund.
 
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Jaylee

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There are specific criteria you need to meet to qualify for a FGM/CGM such as using over 8 testing strips a day or being hypo unaware. The reality is very few qualify. Most people self-fund.

I just mentioned to my endo that my working day on an egg farm north of the M4 involves being up to my elbows in chicken carcasses & bloodletting involved with testing was a little inapropriate?

Speaking of which. We're in danger of throwing the topic.. :)
 

JMoli

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Messages
250
Type of diabetes
LADA
Treatment type
Insulin
Hi, I can’t totally relate to the frustration with food. It’s all testing, get a nice new notebook and write down a meal you would enjoy, grams of carbs in that meal etc and how it goes (either finger pricking regularly or ideally with a Libre) and once you’ve got a few meals worked out then experiment with more, it’s all building confidence I think. I have a dairy and egg intolerance, IBS and am sensitive to fibre and sometimes I burst into tears and just wish there was a pill I could take to replace food but at the end of the day there are still lovely meals and tastes to enjoy etc. Once you have a carb ratio you can start with small amounts of carbs if you’re scared and build up. I’m over a year into this and it’s a bit embarrassing but I still mostly build my meals around either potatoes or bread! x
 

KK123

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3,967
Type of diabetes
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Hi, I can’t totally relate to the frustration with food. It’s all testing, get a nice new notebook and write down a meal you would enjoy, grams of carbs in that meal etc and how it goes (either finger pricking regularly or ideally with a Libre) and once you’ve got a few meals worked out then experiment with more, it’s all building confidence I think. I have a dairy and egg intolerance, IBS and am sensitive to fibre and sometimes I burst into tears and just wish there was a pill I could take to replace food but at the end of the day there are still lovely meals and tastes to enjoy etc. Once you have a carb ratio you can start with small amounts of carbs if you’re scared and build up. I’m over a year into this and it’s a bit embarrassing but I still mostly build my meals around either potatoes or bread! x

There's NOTHING embarrassing about your meals, YOU manage your diabetes yourself and if you are satisfied with what matters to you, ie, your glucose levels, hb1ac and all the rest then it's a job well done. x
 
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JMoli

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There's NOTHING embarrassing about your meals, YOU manage your diabetes yourself and if you are satisfied with what matters to you, ie, your glucose levels, hb1ac and all the rest then it's a job well done. x

Aw, thanks. I guess when I read the ‘T1 can eat anything’ motivational stuff it makes me feel like I’m a bit rubbish at this as I just can’t and keep good blood sugar. I tried pasta again yesterday, I give it a shot once a month, and it’s just chaos and totally screws my day and mindset up! Diabetes can be so frustrating sometimes but if I have to eat potatoes with dinner forever (and my bloods behave) then I don’t really mind xx
 

TashT1

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Messages
308
Type of diabetes
Type 1
Treatment type
Insulin
I took advantage of a cheap Gousto subscription to get new food ideas. Everything comes portioned & with nutritional info. You can usually find a sign up code for 50% off your first box. I kept the recipe cards for the ones I liked & just incorporate it into my weekly shop.

I agree that sometimes deciding what to eat can seem daunting. Having a go to list really helps.

Another approach I use is to purposefully eat very low carb (under 10g) for breakfast & lunch so I just don’t have to think about it until tea.
 
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JMoli

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Messages
250
Type of diabetes
LADA
Treatment type
Insulin
I took advantage of a cheap Gousto subscription to get new food ideas. Everything comes portioned & with nutritional info. You can usually find a sign up code for 50% off your first box. I kept the recipe cards for the ones I liked & just incorporate it into my weekly shop.

I agree that sometimes deciding what to eat can seem daunting. Having a go to list really helps.

Another approach I use is to purposefully eat very low carb (under 10g) for breakfast & lunch so I just don’t have to think about it until tea.

That’s so interesting Tash, I tend to eat most carbs during the day (lunch the highest at around 70g) and stick to 30g, the lowest amount of any of my meals, for dinner so I don’t have to worry about correction doses/going low in the night. I guess we all have different ways of doing things x
 

Bewildered

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Messages
128
Type of diabetes
Type 1
Treatment type
Insulin
That’s so interesting Tash, I tend to eat most carbs during the day (lunch the highest at around 70g) and stick to 30g, the lowest amount of any of my meals, for dinner so I don’t have to worry about correction doses/going low in the night. I guess we all have different ways of doing things x
Evenings are my worst time plus I’m never awake late enough to do a correction dose!
 

JMoli

Well-Known Member
Messages
250
Type of diabetes
LADA
Treatment type
Insulin
Evenings are my worst time plus I’m never awake late enough to do a correction dose!

Yes, I know what you mean. I just want to eat then relax and not have to think about correction doses and have the anxiety of wondering if I’ll have a hypo in the night, don’t want to have to walk off a high either when I’m tired (plus it rains here all the time!) I find 30g of carbs totally manageable, and tend to eat pretty much the same ‘safe’ dinner every night so I know I’ll go to sleep with bloods in range
 
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KK123

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3,967
Type of diabetes
Type 1
Treatment type
Insulin
Aw, thanks. I guess when I read the ‘T1 can eat anything’ motivational stuff it makes me feel like I’m a bit rubbish at this as I just can’t and keep good blood sugar. I tried pasta again yesterday, I give it a shot once a month, and it’s just chaos and totally screws my day and mindset up! Diabetes can be so frustrating sometimes but if I have to eat potatoes with dinner forever (and my bloods behave) then I don’t really mind xx

I think when we say 'type 1s can eat anything', we mean well yes we can 'generally' speaking but not always by any means, but that doesn't necessarily mean we will be able to manage it with our insulin regimes, if only! x
 
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