Newbie with undetermined type

[Sheppeyescapee]

Hi there everyone I'm new on here, I was hospitalised last July with pancreatitis and was diagnosed with diabetes after the pancreatitis. The letter from the diabetes clinic was vague and alluded to some kind of mixed type. Due to being diagnosed over covid I've had very little support for my diabetes. I was shown the basics of how to administer the insulin, how to take bloods and given a few leaflets and sent on my way once I was discharged from hospital. I've had a couple of follow up phone appointments with the diabetes nurse but the last one was at the beginning of the year. I am physically disabled, autistic and possible ADHD and am finding the planning and remembering everything I need to do for my diabetes difficult. I tried going on a low carb diet but am finding it incredibly difficult to stick to when I'm lacking in support hours also another thing that was cut due to covid. This last year has just been so overwhelming

 

[Inka]

Welcome @Sheppeyescapee 🙂 It’s totally understandable why things have been overwhelming for you. A diabetes diagnosis is a shock even in normal times. If you have pancreatitis, it sounds like you might be Type 3c? The mixed type they alluded to could just be some insulin resistance which is associated with Type 2 (you mentioned a low carb diet). But you have insulin and that’s good - even though it might not seem like it now.

What insulins do you take and when?

 

[Lucyr]

Hi and welcome, I’m also autistic and may be able to help with some ideas on what helps me keep on track with medication etc, I’ve had great difficulty over the years with forgetting things if that’s what you mean? I have some better routines now.

I second the questions about what kind of insulin’s you’re on, or any other medication. I’d say don’t try and change everything at once as you may overwhelm yourself, it’s a lot to get used to with taking insulin you don’t need to radically change your diet at the same time. Smaller changes that you can manage will work out better in the long run.

I don’t want to overwhelm with a long post, but look forward to chatting more.

 

[Ditto]

Hello and welcome @Sheppeyescapee 🙂

How do y'all know you're autistic? Did you get a proper diagnosis and stuff? I think I am but they never got around to doing anything about it, just put me on a list and then didn't bother getting back in touch years ago. I'm too old to be bothered about anything now but it would be interesting to have a proper diagnosis if I was on the spectrum and my 'level' 🙂

 

[Lucyr]

Hello and welcome @Sheppeyescapee 🙂

How do y'all know you're autistic? Did you get a proper diagnosis and stuff? I think I am but they never got around to doing anything about it, just put me on a list and then didn't bother getting back in touch years ago. I'm too old to be bothered about anything now but it would be interesting to have a proper diagnosis if I was on the spectrum and my 'level' 🙂

I was diagnosed as a child, and reassessed again as an adult as childhood diagnosis isn’t valid for some accommodations as an adult. The starting point would be to go to your GP with a list of reasons why you think you are autistic and how an assessment would help you, and ask for a referral.

A lot of people say they don’t see how a diagnosis would help them as an adult but I always recommend it being worth it. It explains so much of the things I struggle with that it really helps my mental health and acceptance of myself. It also means I have evidence if needed for situations that I might find difficult, where a self diagnosis isn’t enough. Having Autism diagnosed means it’s on my medical records and known about at every appointment which helps in medical situations. I have a card I can show the police/etc if I were in an unexpected situation where I might react in an unusual way. I can easily get evidence of having autism should I need it at work for any reason, etc.

Feel free to PM me if you want to chat.

 

[Sheppeyescapee]

Hi there, apologies for taking all day to reply to your kind replies. I am taking Humulin I twice a day. I found the letter from the clinic and it said "Diabetes likely combination of insulin insufficiency secondary to pancreatitis and insulin resistance secondary to family history and raised BMI". I think my BMI was about 31 at the time and I've got that down to 29.8. Both parents are prediabetic, and there's a lot of type 2 diabetes on my mum's Mauritian side.

Yeah part of it is forgetting things, or getting distracted partway through doing things so I forget where I've got to. So if I'm doing bloods, insulin and then food I might remember the bloods and insulin, then forget food.. or remember bloods and food but forget the insulin. Or I get so stressed about what I should and shouldn't eat that I walk into the kitchen, look in the cupboard, have a meltdown because I genuinely cant decide what to eat and walk off and don't eat anything. Or the hyperfocus hits and I don't remember to do any of it and don't eat anything all day and then eat loads all at once in the evening. Then there's just the days that pain and fatigue are the issue and I'm stuck in bed all day.

I should be getting 14hrs a week of social care but because of covid I've been getting one 4hr session a week. I've got a social care review coming up though so will see what happens with that.

 

[Lucyr]

Hi there, apologies for taking all day to reply to your kind replies. I am taking Humulin I twice a day. I found the letter from the clinic and it said "Diabetes likely combination of insulin insufficiency secondary to pancreatitis and insulin resistance secondary to family history and raised BMI". I think my BMI was about 31 at the time and I've got that down to 29.8. Both parents are prediabetic, and there's a lot of type 2 diabetes on my mum's Mauritian side.

Yeah part of it is forgetting things, or getting distracted partway through doing things so I forget where I've got to. So if I'm doing bloods, insulin and then food I might remember the bloods and insulin, then forget food.. or remember bloods and food but forget the insulin. Or I get so stressed about what I should and shouldn't eat that I walk into the kitchen, look in the cupboard, have a meltdown because I genuinely cant decide what to eat and walk off and don't eat anything. Or the hyperfocus hits and I don't remember to do any of it and don't eat anything all day and then eat loads all at once in the evening. Then there's just the days that pain and fatigue are the issue and I'm stuck in bed all day.

I should be getting 14hrs a week of social care but because of covid I've been getting one 4hr session a week. I've got a social care review coming up though so will see what happens with that.

I keep all my diabetes stuff on the worktop in the kitchen so that it’s a visual cue when I go in to remember my meds. I have an alarm on my phone for my long acting insulin.

My meter and insulin are in the same case which helps me remember the insulin after I test, though often I forget what dose I am taking but my meter has a calculator and memory so I can check. I imagine you’re on fixed doses given the type of insulin?

I leave my used needles on the case until the end of the day so I can see how many doses I’ve taken, but you could do the reverse and get two needles out in the morning then put in the sharps bin when done.

For food can you plan the menu in advance then you don’t have to decide in the moment?

 

[everydayupsanddowns]

Welcome to the forum @Sheppeyescapee

Hope you find it helpful to be able to share experiences with others on the forum.

Like @Inka I thought that diabetes that is connected to pancreatitis is called type 3c, but it’s one of the rarer types and not all Drs seem to have heard of it.

What is type 3c diabetes?

You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known. Type 3c diabetes develops because of the damage to the pancreas, which can happen for a few different reasons. And although...

www.diabetes.org.uk

 

[Sheppeyescapee]

Yeah my doctors haven't heard of it, depending on which GP I get contacted by they either think I have type 1 or 2 but never one or the other consistently (because of covid it's been all phone consultations with whatever GP is available). I was left with very little advice about diet when I left hospital and I have a tendency to fixate/obsess on numbers so when I found the low carb diet/keto I got very hyperfocussed on being below that number of carbs, it got very stressful very quickly.

 

[Inka]

The very low carb sites prey on the newly diagnosed, offering up a simple solution when there isn’t one. You’re not the only person to get fixated like you describe. Make it easier on yourself and up your carbs a little. Not only will you feel more relaxed, it should also open up a wider variety of meals.

If you can give an idea of what you like to eat and the limits on preparation for you/your support hours, then you might get some suggestions that appeal to you.

 

[Sheppeyescapee]

Some of the things I've already tweaked a bit but to give you an idea. Pizza I've swapped out with a homemade one I do with a low carb wrap (though thinking of swapping that to wholemeal as the low carb ones are expensive!) instead and that seems to have a lot less carbs but still fulfils that pizza need. I generally don't eat a huge amount of bread/sugary cereal anyway and what I do have is wholemeal/wholegrain. I probably cut back too much on the fruit and veg, so shall try to add some more back in. The big one for me is the pasta, I've not found a pasta substitute that I particularly like, maybe just cutting the portion size and switching to wholemeal? I heavily rely on the jars/packets of sauces though and those tend to have a lot of sugar, I try to get the no added sugar/low sugar ones when I can find them. Swapped out normal chips for sweet potato ones. I really hate cauliflower so that rules out cauliflower rice, but the sweet potato rice is alright but again expensive. I don't mind the wholegrain rice. Drinks in my house have always been no added sugar/zero/diet anyway so that's never been an issue, and I tend to have sugar free syrups in coffee.

My favourite foods curry, pizza, pasta, chilli, stir fry, salmon, burgers, chocolate, coffee, bbq

 

[Inka]

Your pizza tweak sounds very good. Using a wrap should cut carbs well. For pasta, there are some pastas made from beans and pulses eg I have a Napolina chickpea one. It has significantly less carbs than normal pasta. It doesn’t taste exactly like normal pasta because the texture is different, but it’s a good base for sauces. Rather than the jars of sauce, perhaps you could try those cartons of chopped tomatoes with hints of flavour? I get one from Tesco for 55p. It’s chopped tomatoes and a hint of garlic. It’s nicer than plain tinned tomatoes and saves adding garlic yourself.

If you don’t like the cauli rice, you could try a small portion of brown rice or basmati rice (that’s lower GI. Portion size is important. It does mean you have to fill up your plate with something else to replace the ‘missing’ rice, but adding green veg or salad is healthy as well as lower carb.

Salmon and burgers are obviously fine, and will help fill you up. For the chilli, you could try a veggie recipe and have it without any rice or just a small amount. Curries should be fine. Avoid ones with too many potatoes, but other than that you should be able to indulge and get some lovely flavours. I’m drooling now as I love curry too! If you’re using sauces for those too, try a curry paste instead. You get the flavours without the carbs.

I like the sweet potato chips. I think you can also get celeriac ones. Again, portion size is important.

 

[Sheppeyescapee]

I quite like basmati rice, that would usually be my rice of choice pre-diabetes diagnosis anyway. I used to use the curry pastes, I shall start doing that again, they last a lot longer too.