Type 1 Serious advice/help needed. I’ve given up.

[daemoncor]

To summarise; I’ve been diabetes for 13 years and only cared for it for roughly 5.

I suffered awful Diabulimia, however I now don’t know what my issue is.
I want to care for myself, but I simply cannot push to do so.
I have slight maculopathy, digestive issues and peripheral neuropathy because of my neglectful care.

My blood sugars are nearly always above 36. I nearly always have ketones. Hba1c is over 16%, and I’ve been admitted for DKA over 10 times.

All of this, and yet I still do not care for myself.
I honestly don’t know what path to take and my diabetes team are absolutely useless. I’ve been honest with them, and they don’t do anything to support me.

Any advice, please?
I have complications. I’ve had warnings, and yet I still can’t bring myself to care for it!

 

[UK T1]

You are caring for yourself by asking for help, and that is important! I'm sure lots will be able to offer help on here, but realise you've made a fantastic start already by asking for it in the first place. Small steps all add up

 

[DCUKMod]

To summarise; I’ve been diabetes for 13 years and only cared for it for roughly 5.

I suffered awful Diabulimia, however I now don’t know what my issue is.
I want to care for myself, but I simply cannot push to do so.
I have slight maculopathy, digestive issues and peripheral neuropathy because of my neglectful care.

My blood sugars are nearly always above 36. I nearly always have ketones. Hba1c is over 16%, and I’ve been admitted for DKA over 10 times.

All of this, and yet I still do not care for myself.
I honestly don’t know what path to take and my diabetes team are absolutely useless. I’ve been honest with them, and they don’t do anything to support me.

Any advice, please?
I have complications. I’ve had warnings, and yet I still can’t bring myself to care for it!

Hi Daemon - Gosh, you've gone through the wars with this thing already.

I don't know how you managed to put your diabulimia behind you, or of that is still part of your daily life, but if you had formal help with that, it might be good to ask to be re-referred to whatever service helped you there. If you managed that by self-help, maybe as you're really struggling with the self-help aspect now, maybe it's time to ask for a referral to the specialist psychology services for people living with diabetes.

I'm sure deep down you know life could be so much better for you if you could wrangle those numbers into a consistently better place, but it must seem like Everest to climb right now.

I'm not T1, so have no personal wisdom to offer you, but maybe setting yourself a small goal to start with - whether consistently taking your rapid acting regularly, or carb-counting for what you eat, then build on that, once it becomes a habit.

Of course, all those things are easy for me to say. I totally "get" that, but as someone who lived with a serious eating disorder earlier min my adult life, I know how daunting a recovery can seem, when the depth of the condition is a relatively comfortable place to be.

Change is very hard, but also so very worth it..

Really, really good luck with it all.

 

[Daibell]

Hi and welcome. You don't need me to tell you that those figures and multiple DKA are very serious. Have you had any counselling? I do volunteer work for my Local Mind charity (on the IT side) and know just how good they are and really care. If you have a local Mind do contact them or get the GP to refer you. Rather than your diabetes team I suspect you really need help on the mental health side. Do ask here if you need any specific T1 help.

 

[EllieM]

I honestly don’t know what path to take and my diabetes team are absolutely useless. I’ve been honest with them, and they don’t do anything to support me.

Doesn't totally surprise me, some clinics are much better than others.

Look, I agree with the others that it may be psychological support that you need the most, but I'll talk a little about the mechanics of managing your T1.

First question, what is your insulin regime? Basal bolus?

*********** basal bolus clinic input*******************
Your team should set you up with a basal dose that keeps you level throughout the night. They then should give you a carb ratio so you know how much insulin you need for a certain amount of carb (eg 1 unit for 5, 7, 10 or 20g of carb, yes the amounts do vary that much and can even vary by time of day). This assumes you have some idea how to count carbs, but there are online course for this.

Then they should give you a correction dose ratio (eg 1 unit of insulin brings you down by 2 mmol/L, but again that value can vary a lot).
****************************************************


But if your levels are as high as you say and you're not skipping injections, then your team is totally failing you, as it sounds that you are on completely the wrong dose/insulins/whatever.

Second question. What, if anything, has your clinic suggested? (Probably should be the first question).

Third question. Are you managing to do your injections now and how often are you testing? You must be feeling so ill with levels that high and that is probably one of the reasons why you have little motivation/energy for change. you'd probably be eligible for the freestyle libre if you asked.


Look, I had abysmal care right through my teens to early twenties (no glucometers available then but I'm guessing I went over 20 a fair amount, because I often got extremely thirsty). Though I didn't (precisely) do diabulimia I know I was eating too much for my insulin. I lucked out and didn't do much damage (that I'm aware of) but there are a lot of stories on here from people who've halted or even reversed their diabetic damage by improving their control. For me, the turning point was visiting a diabetic clinic for the first time (my mother had me visiting a specialist privately as a child) at 20, and being given my first glucometer -" try to get your average below 13...." (or that might have been my hba1c), and a basal/bolus regime "it's more injections but you may find it easier".

Good luck. Please come back and let us know how you are going. You're not the first and unfortunately you won't be the last T1 with these issues, but you don't have to keep them. Getting through diabulimia is a huge achievement, if you can now work on the control aspect you can start feeling the benefit of improved sugars.