Type 5 (mody)

[Cait]

Hello, I’m autistic and not really good with my diet. I really struggle to change my diet, I get so hungry quickly and I also struggle with fake hypos. I have panic attacks when this happens. I start getting confused and sweating and my vision goes blurry and start shaking even when my bloods are at like 9. I got referred to dietician over a year ago and still waiting. I have agoraphobia. And postural tachycardia syndrome and my blood sugar when high cause the worst heart palpitations and dizziness(due to the pots it just makes it worse) how do I stop, I struggle to make food because of my other health conditions, I’m 27 and I just feel like my life is over. How do diabetics get on with their day? I just feel like utter c**p constantly, so fatigued, groggy, spaced out. Any advice, from a desperate female

 

[Inka]

Sorry you’re feeling rubbish - it’s very draining when you go through a period like that.What medication are you on for the MODY @Cait ? When you say you’re “not good” with your diet, do you mean you skip meals or eat between meals or eat too many foods that mess your blood sugar up? Would you find it easier to follow a basic meal plan each day?

Your earlier posts say you’re Type 2? Has your diagnosis recently been changed to MODY? Do you think that diagnosis change has affected things too?

 

[Gardener1234]

Hey I'm autistic too. Is it more about overwhelm from planning and cooking, or difficulty eating different/unfamiliar foods,or something else?

 

[everydayupsanddowns]

Really sorry to hear how you are feeling @Cait

The grogginess and fatigue could well be connected to your high glucose levels. High BGs can also bring on low mood, so working towards reducing your levels should really help you. False hypos are unpleasant, but not dangerous. You may find you experience them less if you try to reduce your BG levels very gradually. Big swings from high BG to lower BG can trigger symptoms just because of the speed of the drop.

I think Type 5 diabetes may be separate to MODY. I think I saw a reference to it recently on the forum.

There’s more information about MODY here:

Maturity onset diabetes of the young (MODY)

MODY is a rare form of diabetes which is different from both type 1 and type 2 diabetes, and runs strongly in families. MODY is caused by a mutation (or change) in a single gene. If a parent has this gene mutation, any child they have, has a 50% chance of inheriting it from them. If a child does...

www.diabetes.org.uk

 

[Cait]

Hey I'm autistic too. Is it more about overwhelm from planning and cooking, or difficulty eating different/unfamiliar foods,or something else?

Hey it’s abit of both. I hate the texture of vegetables or healthy food idk why but it just tastes horrible in my mouth. I only eat cucumber also with me having pots to I can’t stand for long and cook

 

[Cait]

Sorry you’re feeling rubbish - it’s very draining when you go through a period like that.What medication are you on for the MODY @Cait ? When you say you’re “not good” with your diet, do you mean you skip meals or eat between meals or eat too many foods that mess your blood sugar up? Would you find it easier to follow a basic meal plan each day?

Your earlier posts say you’re Type 2? Has your diagnosis recently been changed to MODY? Do you think that diagnosis change has affected things too?

Yeah they originally put me down as type to but then I had to have some testing of the antibodies and c-peptide, and they said it was mody

 

[Cait]

Sorry you’re feeling rubbish - it’s very draining when you go through a period like that.What medication are you on for the MODY @Cait ? When you say you’re “not good” with your diet, do you mean you skip meals or eat between meals or eat too many foods that mess your blood sugar up? Would you find it easier to follow a basic meal plan each day?

Your earlier posts say you’re Type 2? Has your diagnosis recently been changed to MODY? Do you think that diagnosis change has affected things too?

Sorry forgot to mention I’m on Gliclazide

 

[debs248]

Sorry to hear about your struggles, it's hard enough managing diabetes without having other physical and mental conditions that are so draining isn't it. There will be things you can do to enjoy a full life, they just take a bit more thought and lots of planning.

My situation is a bit different to yours, though as I have ME/CFS (and probably POTS) I understand your difficulty cooking. I do as much meal prep sitting down at a table as I can. I'm also taking Gliclazide.

Vegetables are a problem for a lot of ND people I know, it can be helpful to try preparing them in different ways to see what works best for you. Many veg can be eaten raw for example, or roasted instead of boiled, and they taste/ feel completely different. Cucumber can be cooked in stir fries, I love it!

Do you need your veg to be separate and distinct, or you could you hide an extra veg or two in a sauce you already eat? My daughter, (who is ND and gets panic attacks), won't eat spinach or mushrooms on their own but, added to a tomatoey pasta sauce, she'll devour the lot. (Pasta not obligatory of course, I just eat a bowl of the sauce )

I don't know if any of that was useful, but in any case have a virtual hug and remember you don't have to struggle alone, there are lots of helpful people on this forum.

 

[Inka]

Hey it’s abit of both. I hate the texture of vegetables or healthy food idk why but it just tastes horrible in my mouth. I only eat cucumber also with me having pots to I can’t stand for long and cook

I love all veg but interestingly cucumber is way down my list of favourites - which goes to show we’re all different. Have you tried veg cooked in unusual ways, eg roasted kale tastes crispy; stir fried veg has a different texture, etc.

Could you use one of those meal prep services a few times a week/month? Have you tried the Roasting Tin cookbooks? I find their recipes easier as you just throw everything into a roasting tin, so there’s less faffing with pots and pans and less washing up.

 

[helli]

I hate the texture of vegetables

How do you prepare your vegetables?
For example, the texture of carrot is very different depending whether it is stir fried, boiled until soft, sliced and raw or grated.
And the texture of carrot is different to the texture of peas which are different to courgettes which are different to butternut squash which is different to broccoli ...

Like @Inka I love most vegetables. This is because they are so different in taste, colour and texture.
I appreciate you have complex issues but, if you could experiment a little, it may help you find some that you like cooked in different ways. I used to do something like make a small commitment to myself to try something new each week. Could you do this - just once a week so it is not too overwhelming?

 

[Gardener1234]

Hey it’s abit of both. I hate the texture of vegetables or healthy food idk why but it just tastes horrible in my mouth. I only eat cucumber also with me having pots to I can’t stand for long and cook

Yeah that's really common, sorry it's so difficult. Might be worth looking into resources around ARFID.