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T1 diabetes and restricted eating

(22 Posts)
Cheekysquirrel Mon 07-Jan-19 16:18:42

Due to my diabetes I struggle to eat a ‘normal’ diet. During my teens I developed an eating disorder as everyone was so focused on food all the time and it resulted in the best blood sugars I’ve ever had.
My blood sugars have been really unstable since having my daughter three years ago and on top of that I’ve suffered from ptsd and anxiety since her birth, both of which have affected my appetite.
I was about 9 and a half stone after having my daughter but I’ve dropped to about 7st 10lbs (I’m 5ft 5) which gives me a healthy bmi of 18 ish but if I lose much more it will put me into underweight.
My issue is that my sugars are still hit and miss and not eatin eradicates a variable. I feel more like a ‘normal’ person if I don’t eat as I’m not having to worry about balancing my blood sugars against insulin. The less insulin I take the less likely I am to go low. The less food I eat the less likely I am to go high.
It’s been 18 months since I sat and ate a meal with my family (I cook and sit with them but don’t eat) and I usually eat a couple of slices of toast a day and some fruit instead. I can not imagine ever being able to eat normally and I’m not sure now whether this is all the diabetes or if the eating disorder is ruining its head again. I don’t particularly want to be any thinner but I still feel like I’m quite chubby. My natural weight is between 9 and 9 and a half stone but I know I don’t want to be that heavy again. Ideally I’d like to remain around 8 stone.
I’m not really sure where to go from here. The diabetes nurse and clinic are aware I’m barely eating but because it’s causing my diabetes control to present as being good and I’m only borderline underweight they aren’t bothered.
Sometimes I find it depressing that I can’t eat anything. Other times I think I’d rather be thin anyway.

Mumof1andacat Mon 07-Jan-19 16:26:48

There should be a dietician attached to you diabetes team. Ask you consultant or nurse to refer you

Cheekysquirrel Mon 07-Jan-19 16:28:39

The trouble is I know the advice they will give and I’ve been on DAFNE courses... but I feel like I’ve got so used to just not eating that I’m eating has become really disordered.
They could give me a meal plan and I know I wouldn’t follow it.

explodingkitten Mon 07-Jan-19 16:29:36

I remember you from your previous thread. You need to start eating normally and then work out the correct insulin use for you together with your team. You sound like you still have an eating disorder. You should eat normally.

explodingkitten Mon 07-Jan-19 16:30:11

Maybe you should get some therapy for ypur issues with a normal diet.

Mumof1andacat Mon 07-Jan-19 16:31:42

Do you have a psychologist attached to your team? One of the psychologists I work with in my department works a long side the paediatric diabetes clinic. I didn't know if there was something available like this for adults

Cheekysquirrel Mon 07-Jan-19 16:36:48

Some of it is the diabetes. I am scared of the insulin because I get wildly differing results from eating the same food on two different days. This is why I prefer to keep the amount of insulin given low.
I only have 16u total daily and have never required much insulin compared to some others. Sometimes I only need 0.2u for a piece of toast, a different morning with the same food and at the same time I need a unit. I don’t know how much to take when it’s so unpredictable. I have to go with the lowest viable dose but then end up high and feeling unwell some of the time. If I take a higher dose I end up low some of free tine. I’m here on my own a lot as dh works away and being low and dying and my children finding me terrifies me.
Consequently it’s easier not to eat, no highs, no lows.

Hopefullyberidingsoon Mon 07-Jan-19 16:38:50

What you describe (few slices of toast and some fruit) not eating with family, and still feeling chibby whilst being borderline underweight BMI wise does sound like an eating disorder doesn’t it.
The thing is you know yourself that you can only go on ‘so long’ avoiding the issue if your BM control this way because you only have so much weight you can lose and you are already borderline underweight and you will certainly be malnourished with such a poor diet.
My suggestion would be keep a food diary for a few weeks and also note down your feelings about your previous lack of BM control and how you now feel chubby despite scales saying otherwise, take it to your GP and ask for a referral to the Eating disorders team.
Most diabetic teams also have a clinical psychologist whose job it would be to help you process and understand your feelings around your diabetes.

coolcrispwinter Mon 07-Jan-19 16:38:54

What makes you think you are chubby @ a weight that is borderline underweight?

If it is that your flesh is not firm then it is muscle tone you require not remaining at a very low weight. You might well have lost muscle mass by not eating properly.

For that you need a balanced diet, which includes a decent amount of protein which it does not sound like you are eating much of and exercise.

I agree you need to see a dietitian specialising in diabetes to work out how to eat a balanced diet but still keep your blood sugar under control.

Cheekysquirrel Mon 07-Jan-19 16:45:08

I don’t so much feel chubby now but I guess I am untoned. years of injecting and putting needles into pump sites has also left me with some noticeably lumpy areas - the dsn said that other people would just think i was a bit ‘flabby’ but it’s from using my stomach for pump sites. Lovely, it’s all so much fun isn’t it?
I don’t look thin though.
Certainly with a bmi above 22 I look too fat.
I’m usually a size 8 now, interestingly even in my teens when I got down to about 7 stone I never went below a size 8. Occasionally I’m a 6 in places like next that massively size up for vanity sizing.

Lindtnotlint Mon 07-Jan-19 16:48:35

Very practically (T1 here) - eat some zero carb food like cheese. Also get proper help, but some low carb food could practically help increase your intake without triggering blood sugar worries.

Cheekysquirrel Mon 07-Jan-19 16:53:33

I know I should eat low carb, I know this makes the most sense. I suppose I’ve always been a fussy / faddy eater and if I don’t like something much I just won’t eat it even if I’m hungry!
I’m vegetarian but allergic to quorn - last time I had it it resulted in an anaphylactic reaction (couldn’t make it up could you) even though I’d been eating it for years. It started to cause hives but I didn’t realise that’s what it was and then I stopped eating it for a while when pregnant with ds and suffering morning sickness. Ate it again for the first time in a few months and I was head to toe covered in hives, sick and it affected my breathing and I ended up in hospital. I don’t know for 100% I suppose as I’ve never had allergy testing but I don’t think I could ever risk eating it again.
I don’t eat fish either.
I could eat eggs and cheese and nuts but they all come under the heading of foods I don’t really like. What I actually want, when really hungry, is pasta. But I’d never dare eat it because of my blood sugars.

GinandGingerBeer Mon 07-Jan-19 17:45:22

Hello OP, I recognise you from your last thread (correct me if I'm wrong, I won't link it, you were posting about your DH.)
You've come a long way then which is a good start as you've recognised that you have an eating disorder rather than 'brittle diabetes' (which incidentally doesn't exist, there's no such thing as brittle diabetes, medically unproven,it is honestly hit and miss at times re the carbs/insulin for all of us type 1's at times)
So! What's the next step? What do you want to happen?
There's a lot of help and support out there.

Read your last thread, quite a few of us with T1 posted advice.
I'd advise you to ask for a referral to a specialist diabetes clinical psychologist. I've used the service myself, it's very good. This in combination with a linked dietician.

GinandGingerBeer Mon 07-Jan-19 17:49:33

Plus, Twitter has a large T1 community. It's very supportive in a practical, non judgemental way (unlike FB community which can at times be full of shockingly bad advice)
This forum is very good and supportive.

Haworthia Mon 07-Jan-19 17:50:45

I remember your other thread too. I think you were choosing to exist on very small amounts of toast and fruit (to keep your carb intake low) but people pointed out that eating tiny portions of high carb foods was very unwise. I’m not sure what sort of advice you’re looking for to be honest - you received a lot of good advice in the other thread. You know you need to eat a proper low carb diet.

You don’t eat egg, cheese, nuts, fish? Fine. How about chicken and other meats, with green veg/salads?

Cheekysquirrel Mon 07-Jan-19 18:03:31

I am vegetarian and have been for 32 years.

My diabetes is harder to manage than it used to be, that’s for sure. Yes it’s always been unpredictable to a degree, as all t1 is, but not to how it is now. I feel scared to eat and take more insulin in case it happens to be a time I don’t need more insulin! At least if I don’t eat much and have 0.5u active and am dropping it’s easier to sort than if I’ve taken more insulin and am dropping.
Hormones affect it too, which I know is the norm to a degree but I’m much more insulin resistant one half of the month, then wham, hormones drop out and it’s hypo city. However I can never be sure to the day when that will happen as cycles vary between 24 and 30 days. What if I take more insulin and then it’s a day the hormones drop? I am scared of going low.

GinandGingerBeer Mon 07-Jan-19 20:48:34

I'm the same @Cheekysquirrel, a lot of the time. I'm peri menopausal and completely resistant at times then have to decrease my basal by 60% at others. I'm on a pump due to my insulin sensitivity, (I take fewer u it's a day than you smile)
I embrace the T1 tech personally. I use the libre with a Miao Miao and an app called spike. Spike gives you a prediction on where your BG will be. I also get my BG values sent through to my Apple Watch.
I understand that you don't want to risk anything too high carb at the minute, but you do need to eat a more balanced diet. I hope you seek out some further support.

snowie01 Mon 07-Jan-19 22:39:34

I understand you. I also have lived on just basal as I hate injections and if I don't eat I don't have to inject. They always hurt, bruise, bleed I'm covered in lumps and bruises it's gross and I hate it. Im always high lately im terrified of lows. It's all a mess and I wish it would go. I hate most foods always have. Would love to low carb but hate the food and fats and protein hurt my stomach as does too much fibre. I eat toast and plain crisps if I eat much and try one big injection at lunch eat and then try last til my basal injection at night where I have another snack.

GinandGingerBeer Mon 07-Jan-19 22:59:51

Oh @snowie01 that doesn't sound like a good way to live, must be very hard.
Ever tried a pump? Only 1 little prick every 3 or 4 days smilewink
I honestly don't notice mine, just hooks under my arm on the side of my bra.

crimsonhair Mon 07-Jan-19 23:08:50

did you try to actually keep a food diary for a few months? you would then be able to see how you react to certain foods at certain times

my dd has been T1 diabetic for over 2 years and she says she treats it lie a game, she want's to beat it every time, she tops up even for snacks under 5g carbs, she says it's better for her to do it (some ppl don't have to as we know)

snowie01 Tue 08-Jan-19 08:15:17

@GinandGingerBeer I have, was on one for 10 years but my sites got very sore and it wasn't infusing the insulin. Been off it 2 years and was nice but consultant and I agree I need to go back on it so am ok the waiting list. The sites seem to have healed so yes def think will improve things. smile

t1mum3 Wed 09-Jan-19 19:41:36

I think you posted before and I gave recommendations of support from DWED and psychiatric support? Have you asked your team for a psychology referral?

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