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).

Also to the poster who mentioned their marathon running T1 friend - sod off. Live a day in a t1's shoes before you comment, of you're going to be so unhelpful

To be fair to the poster for the marathon running friend. I too have a T1 friend who is a marathon runner. She has worse control than I do but on the face of it, we all 'cope brilliantly' to non T1 people.

I haven't done a basal test in ages OP. I mean in years . I also changed pump to the omnipod about 2 years ago. I think my control is worse and I've been told this is the case with many online. I'm gutted as I love it! The cannula is too short for my fat body

Never done Dafne. But isn't it carb counting and basal testing basically? I'm crap at both but I know the principles I just don't give my condition enough time.

Yeah the marathon thing, I was a semi-pro rugby player for a few years, so lots of training and gym work, I looked great and loved doing it. But my sugar management was awful, I’d binge, purge and was essentially orthorexic.

But that's what I mean user. That poster I doubt knows the ins and outs of her friend's diabetes control and/ or what it takes to be a marathon runner with good control, so it's just a really unhelpful comment!

Just to say that I feel for you. I have children I look after in school, with Type 1. I had no real concept of diabetes before I went on training courses and monitored these young children on a day to day basis.

.... and that's despite having friends who have it.

I'm type 1 had it 18 years absolutely hate it and cry so much as I can't cope. Feel terrible all the time there's always something. Not much help but you're not alone x

I'm type 1 had it 18 years absolutely hate it and cry so much as I can't cope. Feel terrible all the time there's always something

I am really sorry to hear that. It is a frustrating, complicated condition, but management is possible with good medical support. Every type 1 experiences it in different ways and often we become expert on our own individual experience of it. There are associated auto immune conditions, thyroid, coeliac, addison's etc which should be tested for and excluded. Insulin is a hormone so it is influenced by other hormones, which makes it even more challenging for women to manage. If your current regime isn't working, can you ask your doctor to advise what you can change?

for you OP. Yes, there are worse things out there, but that doesn’t make what you are dealing with any easier did for you right now does it? And with diabetes it is the continuous grind that really gets you down. We mostly look fine and everyone says how well we cope and how strong we are and then forgets that there’s actually anything wrong with us in the first place. Which is on one level what you want, because of not wanting to be treated differently but also super hard when diabetes is destroying your immune system and needing support.

For me at the moment it’s continuous UTIS that are really painful and I end up on constant antibiotics for as well as a few other things.

Vent as much as you want! Even if you are the ‘perfect diabetic’, diabetes is not the perfect disease so it will find a way to mess you up sonehow and so we need to give ourselves a break when that happens, let out the frustration and then get up and Try again the next day.

@BovaryX unfortunately I have coeliac and gastroparesis so makes it all more of a challenge, I have a good diabetes nurse who has known me the whole time I've had type 1 and we're getting there, management wise, just hard. Thank you

unfortunately I have coeliac and gastroparesis so makes it all more of a challenge, I have a good diabetes nurse who has known me the whole time I've had type 1 and we're getting there, management wise, just hard. Thank you

I am really sorry to hear that, interlinking auto immune disorders must be a real challenge. Type 1 is hard enough! Good that you have a nurse who knows you well, I wish you the best of luck.

what’s your hba1c?

Op

Be brutally honest
What’s your daily diet look like?

Hi OP, I’m type 1 since I was 18.

You mentioned a dafne course, I’m not sure what that is but I found carb counting & knowing my carb:insulin ratio really helpful for getting my levels back in control after a period of being all over the place.

Can one of your practice nurses help with regular monitoring. I’m lucky as my local hospital clinic is so over stretched it’s been over 3 years since I had an annual review with my consultant. Thankfully a nurse at my surgery is trained in diabetes management and I’ve found meeting with her every six months or so much more useful than the hospital clinic.

Diabetes really is shit and you sound like you’re being so hard in yourself but we both know you can do everything right and still struggle with controlling your levels. And it doesn’t help that we are lumped into the same category as type 2 which largely is a lifestyle issue, I find myself not telling people I meet in a diabetic and when I do mention it I always clarify I’m type 1 because I’m overweight. I have said ‘fat people do get autoimmune conditions’ in more than one occasion, including to a medical professional who should have known better than to assume a fat person must be a type 2.

Hooray for all the type1 marathon runners but a bigger hooray for those of us struggling to live a normal functioning life around constant finger pricks, injections and wondering where your nearest supply of lucozade is and if your next high reading will be the one that throws you into DKA and whether or not your 4 year old will be the one to find you in that state.

Just thought, there's also a brilliant Facebook group called 'diabetes and the low carb life with support and advice for all' that's with joining.

Hope you start to feel better soon OP. X

I’m Type 1 too, with reasonable control (partly through using a dexcom). It’s so shit. I have terrible hypos; often feel exhausted; and really want to just relax occasionally and eat pizza without thinking!

It’s all got a lot harder since I had kids. I try to tell myself that everybody has a cross to bear and this is mine... (it could be very much worse - eg I have three healthy kids!)

Big hugs and sympathy. It’s really hard, and absolutely never-ending.

I've found Scott Benners Juice Box podcast very helpful. I would really recommend it if you've not heard of him. I've changed our approach since listening and have reduced DSs hba1c. We still have many shit days though.

Sending un-mumsnet style hugs op. It's fucking suffocating.

And to the poster with the marathon running friend - did you realise you sound like a complete arsehole?

Type 1 24 years here so I get it. People don’t really know how tough it is, unless they live with you and are engaged. The last few years saw me constantly fatigued with aching joints.

I really recommend having a full thyroid panel done. I don’t convert thyroid hormones properly but the standard test looks ok - I can’t link as MacBook dead but I found studies that show type 1 can act as a TSH suppresser, which means your thyroid will always look ok on the surface.

I have more energy, a clearer brain and less pain on thyroid meds, and meta analysis shows that even mild hypothyroidism in diabetics is associated with more serious retinopathy and nephropathy so it is worth treating.

I’ve managed to get my a1c down to 6.5 now with Dexcom (pump really great at lowering to mid sevens, but couldn’t reduce it more with finger sticks or libre - I really need the hypo safety net of Dexcom to feel comfortable being aggressive with insulin) and what I will say now that my sugars are much lower overall is how noticeable the effect is on my anxiety/ mood once I go above 10, or bounce around with multiple hypos. It’s subtle but definitely there, and makes everything harder.

I feel so sad that type 1 diabetics are essentially just expected to get on with it and are not equipped with Dexcom (and often roadblocks to getting a pump depending on your location) to really have the best chance of managing this and actually having quality of life. It makes me fucking angry tbh.

I’ve had a long struggle to feeling as well as I do, lots of retinopathy scares and only last week in for an urgent appointment as eye went frighteningly fuzzy and turns out there’s swelling on the macula. Oh well, all I can do is hope and try to stay calm and remember we have good treatment options for eyes now.

How is your diabetes nurse? I know they vary widely from excellent to worse than useless, the one really good one I had was diabetic herself and she helped me get back in control by setting small and achievable goals.

Have you tried the diabetes UK forums? There's a lot of good stuff on there but there is also the militant low carbers and sme judgey people.

Hi I’m the one with the marathon running friend with type 1. I’m very sorry if my post causes offence.
What I was trying to say - clearly badly - was that I don’t think low immunity is always about the type 1. What I was trying to say that if you check other things - that affect us all - like vitamin D and iron/B12 levels - then that can help overall health.

I appreciate I have no idea how hard T1 must be for some if not all. But I do think lots of things cause people to feel shit and we shouldn’t lose sight of them too

If anything @Calledyoulastnightfromglasgow that comment makes you look even worse.

Why is that? It’s surely common sense that if you have any chronic condition, if you make sure the fundamentals are working ok it will help?

I have been in a dire state with a heart issue and been very low and getting these things right helped the issue I had - hugely.

If this is insensitive then I’m sorry - but as women we have to fight for our right to health.

It’s insensitive because T1 causes low immunity and when you get one illness it send your bs all over the place so your immunity gets worse and you get something else etc etc.

And as T1s we are so used to hearing people tell us of miracle cures that will stop us having to have a lifetime of injections and it’s really annoying.

I know you are trying to help but when someone is just looking for a supportive space to vent and let it out, just. . . Stop!

@Jellybeansincognito

You’re looking to complain. It’s a sensible comment

I’m looking to complain? Not really, it’s true. You don’t counteract an insensitive comment with a further insensitive comment.