T1 Diabetic and I can't take it anymore

[Sugarcoma]

It was just about manageable before I had a kid but for the last three years I have been suffering from one low-level infection after another: on my feet, colds/flus, thrush - just constantly, one after the other, plus general fatigue that just absolutely floors me and background retinopathy. A cold will knock me out for a minimum of 3 weeks.

My sugar levels aren't terrible and I'm trying to control them as best I can - I don't drink or smoke, I'm trying to eat better, I don't go to sleep late, I try and go to the gym when I can - but after the baby my immune system is just shot to shit (and all the extra insulin has just made me put on weight which I'm finding particularly galling as I'm trying to cut back on carbs).

I'm sitting here in absolute tears after yet another bout of thrush and I have no one to turn to who really understands so I'm hoping someone here will. I know there are worse illnesses out there but it's impacting my work, my parenting, my social life, everything. Plus I'm having to accept that if this is how I'm feeling after just one kid I'll never be able to have another.

I just really feel life isn't worth living like this. (I'm not a danger to myself, don't worry, just feeling like I'm at rock bottom).

Sorry, complete cross post

Sugarcoma
I really encourage you to cut down on bread. This realisation was a break through for me. Its impact on blood sugar is incredible. Type 1does require constant monitoring and can be really frustrating. Your story about the nurse is awful. Delaying lunch for type 1s? I would also push for more regular testing.

@Besidesthepoint

I think a lot of the forums tend to be full of people from the USA - it’s the same with Addison’s- and they don’t seem to be as good as managing / controlling things medication wise as we are in the UK. I’m not sure why that is, maybe health insurance / costs related..? Full of horror stories as you say!

My friend is type 1 diabetes and a marathon runner. Her health is amazing. But she optimises everything - eats brilliantly.

@Calledyoulastnightfromglasgow How much do you actually know about this condition? Because your comment sounds very much like because your friend is healthy (which is great) then you have absolutely no understanding of the fact that T1 isn't that kind to everyone. Some people can look after themselves implicitly and still have complications and some not so much and have none. Your comment is unhelpful, lacking empathy and frankly, just shit.

OP, I don't have T1 but my DD has and it's a constant grind. She's only 13 and we (and she) do our absolute best but it's such a dreadful condition that many people just don't understand. I'm terrified for her future.

Sugar,
Some types of insulin can exacerbate weight gain. I am not suggesting that this is the case with you, but if your current regime isn't working, can you ask your doctor if switching insulin may help?

for you OP. A very good friend of mine is T1, she’s actually a psychotherapist and what brought her to that was her own mental health struggles coming to terms with her diabetes, I understand that it’s really, really common for people living with T1 to find this. You should be able to access specialist MH support for people living with a long term health condition - I don’t know if perhaps your diabetes nurse or similar might be able to point you in the right direction for this maybe?

I also second (/third/fourth) regular comprehensive monitoring for other things than just diabetes. Could you afford some private testing through medichecks/blue horizons or similar if your NHS offering isn’t ideal? Also, request & keep copies of all your blood results, do some reading up on things and review them yourself - it’s sadly not uncommon for some frontline HCPs to paint by numbers on blood results - I was told something was fine because it was ‘normal’ - it was one point off the bottom of the normal range and when I supplemented it a whole host of issues were solved.

Lastly I know what you mean about not wanting to cut back work because it’s one thing you do well, I feel the same, it’s a huge part of my ‘identity’ doing my job and a huge part of my self esteem to be good at it... but, you can’t keep doing that if you’re not looking after yourself first.

hope today is a not-awful day for you.

I don't have t1 but also felt shit for a good couple of years after having a baby. Your post really resonated. There was nothing obvious in my blood work but I just felt so...depleted. And picked up everything under the sun so I was pretty much continuously ill for her first three winters. You've obviously got the added complication of diabetes too. I was also completely addicted to carbs, Because I felt so tired and low my body craved carbs, which didn't help.

Time and her sleeping through helped. I hope you feel better soon.

Sugar
Sorry to bombard you with questions! Have you had your thyroid checked? As a PP mentioned, other auto immune disorders should be tested. How do you find the pump? How often do you have hypos?

Jeez, cross-posted cos slow typing, that diabetes nurse does not sound helpful!

Have you tried a ketogenic diet? I'm not T1 but I have a friend who has lost a lot of weight and stabilised her T1 by going Keto

www.diabetes.org.uk

Hi op. I don't have diabetes so you can totally tell me to sod off, but I just came to say stop being so hard on yourself. I studied long term conditions and what most people don't realise is diabetes is one of the worst because of everything that's associated with it if it's not managed correctly. There really isn't many other conditions which trump in in imo. But for some reason others get a lot more press and diabetes is labelled totally wrong in the media "as a fat lazy disease".

We need insulin to survive, If you could cut your body open and see the damage to vital organs diabetes can do there would be a lot less judgment.

I added a link as you say your GP isn't very helpful. Although there is no cure for diabetes you can manage symptoms with the correct support.

Although it sounds like you have an idea that you need to cut out the fast hitting carbs. And it does sounds a good idea to avoid the sugar spikes. Just struggling to do it, which is not surprising with a small child and constant rounds of illness. Not sure how to help you with it, but def worth giving that a go

a fat lazy disease

90 per cent of diabetics are Type 2. Type 1s suffer from being conflated with the majority of diabetics, despite having significant differences from that cohort. One of the differences is age of onset , type 1 is more likely to manifest in childhood and adolescence. That is changing though as children become more obese.

Oh, and it may help op to realise that whilst DH is one of those marathon running diabetics, he also has periods of incredible despair, months on end when he control his sugar levels properly, & when illness hits it makes it all so much more difficult to manage

OP there is a diabetes forum on here - under the Health section - not sure how much traffic there is but you may get some more helpful responses

No advice for you but I'm sorry you're having such a shit time

Definitely get checked for coeliac disease as well, it does cause marked fatigue and goes with other autoimmune disease. It's just a blood test initially.

Yes, good idea to be tested for coeliac, it's really simple to exclude that from a blood test.

It much be an awful illness to live with.

I think (and I think you know already) that you need to overhaul your diet as a priority.

And I know how hard it is to cut out the chocolate and the bread (carb heavy comfort food) while you’re feeling so run down and low.

The key is to find that will power, that motivation but it is so much easier said than done.

Refined sugar and processed carbs makes me feel ill and I’m not diabetic so I can only imagine what they’re doing to you.

I wish you luck- January is a good time of year for making positive changes. Take it slow, treat your body like it deserves, see what you choose to eat as a way of nourishing yourself. Choosing crap food is a form of self harm.

Hi OP,

I'm type 1 (have been for 30 years now. Wow that's scary. First time I've thought about that in a v long time).

I too am exhausted all the time. I am now 4 stone overweight and I do really really struggle to lose it.

My a1c doesn't look too bad so the NHS think I'm the model diabetic. But I swing about all the time which of course averages out ok. I'm finding it all particularly difficult at the moment and I think it's due to stress. I'm a single mum (xh fucked off 6 yrs ago) and on the face of it we are doing fab. But my eldest is struggling to the point she was exuded last term (she's 10) and her behaviour to me could be more ASD.
Anyway. My ramble is the stress it's causing means I'm either not in control because I don't have time, or, the stress is causing the lack of control.

I think, in your shoes I would see if I could reduce the stress. Is their any support? Not for the diabetes as such, but for all the other 'stuff'?

And bread is definitely a no for me . I do eat it occasionally. I've worked out it's actually wheat that is the problem. I can't eat pasta etc without massive spikes. But rice and potato is nowhere near as bad. I've started eating gluten free stuff occasionally and I'm not finding anywhere near such a massive spike. Plus, I find wheat bloats me too.

Huge hug. It's really shit. Every now and again I get a perfect couple of days of control. Even doing exactly the same the next few days gets different results. My hormones definitely mess it around too

I’m a type 1, just like you all I need to do is think about a cold and I get ill. Luckily my son doesn’t seem to bring too many illnesses home from school.

Chocolate, do you like dark chocolate? If so a switch to dark will dramatically cut down on sugar content.

I can’t have any type of bread without high levels either, I do have one roti a day as they’re small and I make them using rice flour which gives me less of a spike than wheat flour.

How many grams of carbs are you on a day? I was on 42g, I have now been given the all clear to have 100g as long as it’s spread through the day and it’s actually going okay.

Stress has a huge impact on my sugars, I am on ADs and it has reduced my stress and anxiety levels massively.

It is shit, so many people don’t get that a perfect diet can still lead to huge highs and huge lows.

Sorry you are feeling so crap OP.

I'm a long term T1 (23y!). I was very rundown after my first child - turned out my vitamin D levels were very low. Worth getting checked, along with, as others suggest, coeliac and thyroid tests (common issues in Type 1).

I have found the Libre and doing the Dafne course to be absolute game changers, can't recommend them enough if they are available to you. I know a lot of people really recommend the pump too.

Regarding the thrush, have you seen GP? I needed a course of weekly pessaries for, I think, 6 weeks, to fully clear it.

I've also found the more carbs I have, the more I crave. I think it's because of the appetite stimulation effect of insulin. One of the consultants at my clinic suggested 3 days of no carbs between meals (I instead was grazing on cheese, ham, cherry tomatoes and nuts). It really broke the intense craving cycle for me. Might be worth a try.

@user1471530109 have you done the DAFNE course? I was the same (good hba1c, but massive swibgs). DAFNE really helped me get more stability. My background dose was far too high, for one thing.

OP if you can spare £100, do a month with Vanessa here: she's amazing
vhhealthcoaching.co.uk/

She changed my health massively

What eurochick said. I'm not diabetic but your post really resonated. DD is nearly two, and I'm asthmatic and pregnant, and this winter has been really hard. She brings home a cold from nursery, she and DH feel a bit off for a few days but I'm wrecked for three weeks, and by the time I'm starting to feel better again, the next one arrives.

I actually feel a bit better since Christmas, we all had a fortnight off and some rest and I feel more on top of things. Would it be possible to take a couple of weeks off work and leave DC in nursery? If you used the time to rest, that might help you recover and break the cycle of infection after infection. And if you were feeling better you might find it easier to look at the diet side of things (I know I eat like shit when I'm not feeling well).

I'm not looking to downplay how tough t1 is btw, a friend of mine has it and she really struggles at times. It must be relentless