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).

I am so sorry. Sounds horrible. Have you spoken to your doctor to see if theres anything they can do?

I dont have diabetes so cant help but my immune system was rubbish for years after kids. I was also tired constantly. Caught every bug going. Felt I always had a cold etc. Not sure what changed but it did start to get better around 3 years after my second kid. I hope you feel better soon.

Fellow T1 just sending hugs and understanding. This disease is a bastard.

I always think that what makes it harder is that you look fine and people assume you're fine even when you feel like you do now.

Do you have a DSN or anyone you can turn to?

I was struggling post-diagnosis and found an amazing 'diabetic health coach'online because I wasn't getting the help I needed from the NHS.
X

Oh was going to also say do you have support? Can you access more? Can your child go to nursery a few days a week and you just use it to recover?

OP I really feel for you, it sounds absolutely shit.

“There are worse illnesses out there” - oh I dare say, but it doesn’t mean that you’re not allowed to feel like this. There’s nothing wrong with wanting to feel ok!

Thanks for the replies. My DH is generally pretty great but I've never found any medical professionals to be particularly helpful, even the kindly ones. They all just say the same thing which is that the infections are a cause of high BG and I've got to keep it tight - well I'm trying! It doesn't seem to help.

My son is in nursery almost full time and I work from home but I'm finding even that unmanageable (shows you just how pathetic I am).

I'm freelance so I could take a step back from work for a bit but my work is the one thing in my life I really, really love doing (it can be quite stressful tho) and the thought of having to give it up, even for a few months, is really upsetting, even though I know it could probably help me in the long run (by getting into better routines with meals and gym etc).

I just feel like I keep having to give things up and for what? This disease will get me one way or another.

Not T1 but Dh is. So sorry you feel like this. Dh has found great support on Twitter and has been to a few organised events too. Hashtag to follow / talk to others is #gbdoc. Also follow @parthaskar - he's a consultant who organises events and is generally inspiring

Great sympathy here. Have you been checked for Addison's disease?

Have you been tested for other autoimmune conditions too? I’m asking as they tend to go hand in hand - so b12 deficiency, addisons, thyroid issues, anaemia, etc? Might be worth checking there is nothing else going on that is making things harder for you. I have Addison’s, hypothyroidism and anaemia and these cause the same issues that you’re suffering with (I’m just waiting for the day they say I have diabetes as well to be honest)! It’s very frustrating living with chronic illness.

I think you should push for some basic bloods done to check vitamin D, B12 and iron levels. These can all affect your immunity.

Are you eating enough red meat? Vegan food does not an energetic person make. What is your diet like aside from the diabetes?

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

Thanks - good suggestions to be checked for those things (especially since there's a history of various autoimmune conditions in my family).

I used to say even before having a kid that it felt like having a child - you need to think about it constantly, check in on it (even through the night), look after it. I'm just so fed up.

Have you been on a daphne course?

My last blood checks (thyroid, Vit D, iron etc) were fine although I'm probably due for a new set. And I'm definitely not vegan (in fact the one thing I can guarantee to keep my BG stable is steak).

Mentioning "friends with T1" who are Everest mountaineers, marathon runners etc is really unhelpful btw - not sure what your point even is. People with chronic illnesses don't want to hear about "my friend" and their miracle cure or amazing ability to cope. Everybody's body is different and unless you have it yourself you have absolutely no idea how bloody hard it is to live with so I really DGAF about Olympian T1s.

Hi,
How often are you having full blood work? I don't know what it's like in the NHS, but every 3 months is a good standard for testing everything including cholesterol, long term glucose etc. Can you have B12, iron, Vitamin D tested as well? Are you using a pen? How often do you check your own blood sugar? One more tip. Bread. Bin it. Plus all its subsidiaries, like biscuits. It is lethal for blood sugar.

Did something similar to DAPHNE a few years ago. Want to hear a hilarious story?

The course was meant to take place 1 day a week over 4 weeks but there were only two of us attending it so they decided to cram all the info into 2 days.

In their hurry to cram all the info this on the 2nd day of the course the diabetic nurse kept pushing lunch back to fit it all in and I had a hypo (I think maybe the other girl did too).

That pretty much sums up healthcare professionals' attitude to T1.

If your problems are escalated by your levels, is there a way for you to change things to get better levels? What do you use? My a1C got a lot better when I started using the 670G pump with sensor. I'm now also going to switch novorapid to fiasp, when I tried the fiasp insulin for a week I saw that my levels were also more stable.

@Calledyoulastnightfromglasgow how is that helpful to op bar probably making her feel worse?

OP type 1 sounds absolutely life controlling and you’re not giving yourself enough credit. I hope you find some support to help you through soon.

Well said sugarcoma. Some people have no wit

OP, you might want to ask your question on a type 1 forum. You are now clearly getting answers from people who know nothing about T1. It's like reading that you should cure cancer by thinking positive thoughts and putting a camembert on your head.

Hi @BovaryX - I believe it is full bloodworm and it's about once/twice a year. I can push for more but there's not been any major differences.

Pump and libre. Check BGs dozens of times a day (on both Libre and fingerpick as Libre not always accurate).

Carbs are the problem. I don't drink but I am completely addicted to bread and chocolate. I'm trying to be better (Xmas/NY were bad) but that's what makes all of this even more frustrating - I cut back massively on carbs and I'm still dealing with the infections all the time and putting on weight. It just winds me up so much I want to scream.

Geez, I have heard rumours that the level of care is area dependent.

Tbh the T1 forum I'm on is just a horror show - every day people posting about diabetes-related complications I've never even heard of. It's absolutely horrifying.

I think I posted here because it's the fact that having a kid has made it all so much worse (I was never this ill (or fat) before) and would love to hear from other T1 diabetic mums (unless they happen to be marathon runners).

Is it the amount of carbs that is the problem or are you snacking in between? I found eating a treat with or straight after a meal gives me my sugar fix without sending my levels off the rest of the day.

I feel your pain! Health professionals have been shit. I had to correct the optometrist the other day as he wrote T2 on my notes. All bar one HCP have given me wrong information. No one understands the mental load.

I used a freestyle Libre monitor. It is very expensive, and only lasts 14 days, but it enabled me to realise I might have Chronic Somogyi rebound. I’ve adusted doses and it seems to be working. you don’t need the monitor, I just down loaded the app to my phone.

I am not UK, but did a DAFNE course. The educators were amazing. Unlike dieticians they understand it is not a simple carb count..

I'm not a marathon runner, and am overweight, but my daughter was stillborn so I can't give any input on those side of things.

I know what you mean regarding scary forums. I'm dutch, and those forums are ok, but tge international/american forums are scary and full of people who aren't in control.