I don't know what I'm doing

[lizcoop]

I feel like I'm just flailing around in the dark. Initially (I was diagnosed about 6 weeks ago aged 55 having gone into DK). I was taking 14 units of Lantus first thing in the morning and 4 units of Novorapid before each meal and eating low carb and was 97-100% in range. I was managing great. Then my 98 year old Mum had a fall so I had to leave my home and move in with her and my brother to take care of her (she is very high maintenance and it's a super stressful time with a lot of rows and tears). Long story short, my glucose has been. all over the place - high, low and in between. I was told each unit of fast acting brings it down by 2-3 mmol but that doesn't seem to be the case so I am just playing a guessing game with injrvyinh between 4 and 6 units to reduce it each time it goes high. Then I sometimes get lows, other times it's just slow at coming down but no real pattern. I am exhausted and burnt out by the seemingly endless injections and all those in my future. I don't really want to live like this if I'm honest. I hate that this has happened to me. Even the prospect of getting a pump in the future doesn't make me feel any better as that looks like a real pain as well. I am seeing my diabetes doc on Thursday and will tell him all this - maybe my basal needs to be adjusted but as I haven't even had a chance to get my head round this before Mum's fall I haven't had much of a chance to get used to it so every change sugar-wise is stressing me out. I feel so alone and depressed. Just a vent really but any words of wisdom would be helpful. Thanks.

 

[JoKalsbeek]

I feel like I'm just flailing around in the dark. Initially (I was diagnosed about 6 weeks ago aged 55 having gone into DK). I was taking 14 units of Lantus first thing in the morning and 4 units of Novorapid before each meal and eating low carb and was 97-100% in range. I was managing great. Then my 98 year old Mum had a fall so I had to leave my home and move in with her and my brother to take care of her (she is very high maintenance and it's a super stressful time with a lot of rows and tears). Long story short, my glucose has been. all over the place - high, low and in between. I was told each unit of fast acting brings it down by 2-3 mmol but that doesn't seem to be the case so I am just playing a guessing game with injrvyinh between 4 and 6 units to reduce it each time it goes high. Then I sometimes get lows, other times it's just slow at coming down but no real pattern. I am exhausted and burnt out by the seemingly endless injections and all those in my future. I don't really want to live like this if I'm honest. I hate that this has happened to me. Even the prospect of getting a pump in the future doesn't make me feel any better as that looks like a real pain as well. I am seeing my diabetes doc on Thursday and will tell him all this - maybe my basal needs to be adjusted but as I haven't even had a chance to get my head round this before Mum's fall I haven't had much of a chance to get used to it so every change sugar-wise is stressing me out. I feel so alone and depressed. Just a vent really but any words of wisdom would be helpful. Thanks.

I'm a T2 so absolutely useless in most things T1, but just a few observations: You were thrown in the deep end and did NOT have a moment to get a handle on things. You were doing really well, being in range and all, finding out what worked for you in the calm of your own home, and then the fall happened. You'd had no practice whatsoever with fluctuations or anything that might throw a wrench in, and now it's all wrench, all day. There's more than food that affects blood glucose. Stress being a very, very big one, as you've been finding out. I understand you need to take care of your mum, but this is, very clearly, not a healthy situation for you. You might want to bring that up, because you do need to, and deserve to, take care of your own health and needs as well. Get home care involved or something, because this.... Is not good for you. Between you, your brother and your mum, you might be able to work out something that suits the needs of all of you. Try and get help, somehow, with your mum's care, so you can stop spiraling yourself. I mean... In my mum's last month-and-a-half, I knew my health was taking a back seat, and that was fine. She wasn't going to be with us much longer, so I could make her a priority. Two years after her passing, I'm still dealing with what I did to my body in those weeks, and I'd honestly do it again for a loved one. But I knew it was a matter of weeks, I knew there would be an end to it and I could make the decision to put her first, knowing full well I was wrecking things for myself in the process. (She deserved no less, in my opinion). I also knew I'd be able to fix it later, which I am, slowly. Do you have any idea how long this will last, or is this an indefinite situation? Can you physically and mentally afford to put your health on hold for however long this'll take? They're real, valid questions you could ask yourself. At 98, taking a fall is something that is likely to be repeated; once people start bowling over they don't usually stop, I've found. A care home might be better suited for her than what you can reasonably do. (I know from experience that trying to get someone up off the ground is.... Not easy.). You shouldn't have to shoulder this alone, you and your brother. You have a lot on your plate already, and all this isn't helping. It's okay to be your own advocate, and express your own needs, if that is what you want to do.

Hugs,
Jo

 

[Fairygodmother]

Hi @lizcoop, I agree with JoKalsbeek, you must allow yourself to put yourself first. At 55 you have a lot of life ahead of you so getting a handle on the ways you can live more happily with Type One is essential. You went into DKA before diagnosis so you already know how wretched that is, plus it’s life threatening.
You matter too.
Learn to say no when your mother’s high maintenance demands encroach on your own health needs.
At this stage, so soon after diagnosis, you need time and a clear head to keep notes of carbohydrates eaten, blood sugars, units injected so that those records can be used to find your insulin needs for healthy living.
Your mother’s fall isn’t the only medical emergency in the picture.
Yes, you matter too!

 

[Juicyj]

Hi @lizcoop Diagnosis is tough - there's alot to take in and also it can take a while for your body to recover, you have been in a highly stressful situation where your body hasn't been right for a while, getting used to insulin injections can and does take time so just go easy on yourself, prioritise your health.

Take it one day at a time, lean on the forum and speak to your team if the insulin injections don't seem to be hitting the mark, in time you will adjust these yourself,

Sadly stress and t1d aren't great partners, stress can aggravate t1d control as it's releasing a hormone that tells the liver to pump some glucose, I found meditation and running because of being t1d as these help keep me calm, trust me though when I say this but it does get better in time, I felt incredible frustration when I was diagnosed and couldn't get it right, knowledge is power so learn as much as you can as it will empower you and give you confidence. Happy to chat if you need an ear.

 

[Marikev]

Hei @lizcoop , agree with what others have said that you need to prioritise yourself for at least part of your days, or maybe weeks at the moment. A diagnosis of Type 1 is a lot to get your head round , all by itself.
On diagnosis, nearly 3 years ago at age 68, I was fortunate enough to have been hospitalized for 5 days, learning to finger prick blood test and inject insulin, and being fed 4 meals a day. I carried on with this routine after I was discharged and it served me well, till I realized I was putting on weight, I was eating to the insulin doses as I was too naive and scared to change them. I recently found the little booklets I was given where I recorded all my blood sugar readings, insulin doses, food intake and exercise, it was a lot of effort doing all that for many weeks. Was issued with CGMs a couple of months later.
You’ve not had time to do this extended data collection to assess your own situation and now very suddenly a new routine, in a new location too.
I think your situation is a bit like the pre flight information given on commercial airlines…if the oxygen masks drop from the ceiling, fix your own first before trying to help anyone else, no matter what.
Here follows a long ‘shaggy dog’ story, but think it illustrates neatly the need to make sure you as ‘helper’ are OK first. After the incident I made DH practice getting up off the floor safely , with and without assistance!
One Saturday last Spring my DH was working outside and I heard him calling my name. Guessing there was some emergency I went on the balcony to see him in a fallen heap on the ramp he was fixing. Having established he was conscious and not bleeding heavily.. I told him to wait and stay still while I got dressed and addressed my blood sugar, guessing whatever he had done was going to require me driving him to the emergency doctor.
By the time I had sorted myself out and got outside to him he was sat in a chair and our next door neighbour was retreating back home, having somehow wrangled all 20 stone or so of DH on to a chair. He had heard DH yell and the thud as he toppled over and came across to investigate. Turned out DH had just a minor scratch on his knee, which I fixed with warm water, TCP and a plaster. But as I’m doing this I hear the sound of a helicopter…the ambulance helicopter, which I think our neighbour had called having heard and seen DH ‘go down’… we live on an island 2 hours drive and ferry time from the local ER, whereas the air ambulance can evidently be here in the time it takes me to get dressed and fix my blood sugar! 10 minutes?
Somebody told me afterwards there was another emergency in our village about the same time, a toddler swallowed a tiny battery! And the helicopter couldn’t land on the football pitch as there was a wedding celebration going on!
but from my point of view…seeing to myself first was probably the best option, somebody else actually stepped in and did the hardest part of the procedure, getting hubby upright again.
Hoping you can get some support for you and your family.
best wishes,
Marion

 

[lizcoop]

Thank you all so much. My mother is fairly indomitable so I am feeling rather more confident that she may well be OK for me to spend quite a bit more time at home instead of with her so I'm feeling more hopeful and then get handle more on my condition and start logging foods/sugar/insulin levels etc. Really appreciate all your advice - I always find it hard to put myself first but I will be trying. Just being back at home and my levels have dropped and I feel calmer plus have started CBT to help. Thanks again all.

 

[KD65]

Hi lizcoop, sorry to hear you're struggling with it. Similar to you I was suddenly diagnosed just before Christmas age 59 with no family history or anything. When I went into hospital my BG and ketones were way up the scale and even after I came home, the glucose stayed high for a while but gradually came under control (I have to say, the Libre is a massive help to managing it). After a few weeks, far from being high, I was getting a lot of hypos, and one particular day at work I was basically force feeding myself carbs all day just to stay out of the red. After one more dose of Novorapid the next day I decided to knock it off. When I spoke with my diabetes nurse, she said I had done the right thing and was in the "honeymoon period" which could last a few days or a couple of years, but just monitor it and act accordingly. I now use a small dose of Novorapid occasionally if I'm having a lot of carbs, but I do maintain the Lantus at 8 in a morning and 10 at night, and it's working for me. I'm lucky, my specialist nurse is brilliant, it seems from the boards here not all are as good.

A point I was getting to before all this rambling, my experience is that stress can play havoc with your BG. In my case, mainly work, but in your situation you are obviously under a lot of stress and I have no doubt this will be making your BG hard to manage. My message is don't beat yourself up over it. It takes time to learn to manage it (I'm only barely starting to learn) but listen to your body and go with what feels right and works for you. Stay in contact with your nurse, but only you know what is really working for you. Give it time, and accept that other factors do have an impact.

 

[westlife48]

I feel like I'm just flailing around in the dark. Initially (I was diagnosed about 6 weeks ago aged 55 having gone into DK). I was taking 14 units of Lantus first thing in the morning and 4 units of Novorapid before each meal and eating low carb and was 97-100% in range. I was managing great. Then my 98 year old Mum had a fall so I had to leave my home and move in with her and my brother to take care of her (she is very high maintenance and it's a super stressful time with a lot of rows and tears). Long story short, my glucose has been. all over the place - high, low and in between. I was told each unit of fast acting brings it down by 2-3 mmol but that doesn't seem to be the case so I am just playing a guessing game with injrvyinh between 4 and 6 units to reduce it each time it goes high. Then I sometimes get lows, other times it's just slow at coming down but no real pattern. I am exhausted and burnt out by the seemingly endless injections and all those in my future. I don't really want to live like this if I'm honest. I hate that this has happened to me. Even the prospect of getting a pump in the future doesn't make me feel any better as that looks like a real pain as well. I am seeing my diabetes doc on Thursday and will tell him all this - maybe my basal needs to be adjusted but as I haven't even had a chance to get my head round this before Mum's fall I haven't had much of a chance to get used to it so every change sugar-wise is stressing me out. I feel so alone and depressed. Just a vent really but any words of wisdom would be helpful. Thanks.

Stress can do this to you I have had this it will get back to normal when things carm down