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Struggling with type 1.

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zozo1505

zozo1505

New Member
Relationship to Diabetes
Type 1
Hi everybody, my name is Zoe and was diagnosed with type 1 diabetes roughly 5 years ago after being misdiagnosed as type 2. I am very nervous posting this,
I haven't had a very good start with diabetes and have had a couple of bad DKA's.
Up until now I thought I was coping well but i feel like I'm slowly slipping back into feeling defeated by everything, my sugar levels are all over the place and I am trying so hard to watch what I eat, I really want to get hold of my sugar levels and keep them stable, a few weeks ago my levels were amazing but now they are not so great.. is there any kind of advice that anyone can give about staying positive?
Thank you for taking the time to read this
Zoe x
 
Hi Zoe, welcome to the forum, I’m glad you’ve found it. I am certain there are plenty of people here who know exactly how you feel and will be along with loads of support for you.
No need to be nervous about being open and honest here, you’ve come to the right place. 🙂
 
Welcome to the forum Zoe from another Type 1 initially diagnosed type 2. I think you have already taken a huge step in coming on the forum and looking for advice. Just having a community of people around you who get what you mean is very helpful and can make a positive difference just by itself. What insulins are you on? Do you carb count? We can help suggest one small improvement you can try, rather than trying to sort everything all at once.
 
Hey! Thank you for responding,
I currently am on Novorapid and Toujeo, i used to be on Levemir but they switched it.
I do carb count well as best as I can, I did the K.A.T.1.E course a couple of years ago, at the moment I am still living at home due to the covid pandemic so measuring out and weighing portions is difficult as my dad cooks the dinner and its ready when I get home from work so I try and work it out without weighing, i have the carbs and cals app which I find useful, and i try to avoid food that are high in carbs.
I try to eat small portions too as my doc has said about keeping my weight down.
Are there a lot of factors that can affect sugar levels like stress, the heat etc?
 
Someone once posted something on here with 42 things that affect blood sugar and that was just a start! We could all think of more! Will try and find it for you. Absolutely stress and heat though.
 
Hi @zozo1505, welcome! You've taken a big step reaching out - we all understand how hard diabetes is! There are a couple of books you could read if you need any practical help - Think Like A Pancreas is a great one.

Other than that, try not to be too hard on yourself, diabetes is tough, and as you can see from @stephknits's post, so many things can affect blood sugars! The forum is always here for support when you need a boost or just to vent 🙂
 
No problem @zozo1505! Hope the book helps 🙂 Keep us posted how you get on, and feel free to ask the forum anything!
 
Hi Zoe and welcome from me too.

I am just a year down the line with Type 1 after being assumed Type 2 for a few months but the forum has made a huge difference to my knowledge, understanding and management of my diabetes. Still plenty of progress to be made but perfection is not possible and it is such a frustrating condition because just when you think you have the hang of it, the goal posts move. Getting your basal insulin dose correct is really key to the whole thing and having a basal insulin which works for your lifestyle and body rhythms as some of them have quite different profiles of activity.

Was there a reason why they swapped you from Levemir to Toujeo and were you managing things better before the change or after? You should be able to change back if the Levemir was better.

How frequently do you monitor your BG readings? Checking more frequently can help to understand what is going on and how to improve things. Have you been told about or offered the Freestyle Libre Flash Glucose Monitoring system where you swipe a sensor on your arm with a reader for results instead of finger pricking?.... this means you can see what is happening day and night because it plots a graph with your readings taken every 5 mins, even whilst you are asleep. It can be a huge help in getting basal insulin doses correct and minimizing the spike from foods.

What sort of readings are you currently getting? Are they mostly high or do you get quite erratic swings? Just wondering what areas you need most help with or is it purely motivation? I find using a phone app to keep a record of my readings and my food and exercise helps to keep me focussed and look back and see what worked and what didn't, so that I learn for next time. We also have a lovely thread here called "Group 7-day waking average" in the General section where many of us post our morning fasting reading and have a bit of a catch up. It is a bit like a virtual coffee morning where we touch base and share a bit of our everyday lives as well as our morning reading and perhaps offer some excuse as to why it is not in range (like we had a naughty pizza last night..... and it was so worth it!) or celebrate when we got a good reading. It can help to keep you focussed and also to understand that at times we all struggle. Anyway, perhaps we will see you post on that thread, but in the meantime, make yourself at home here and feel free to ask any questions that might be bugging you. There is so much experience here, someone is pretty much guaranteed to know the answer.
 
Welcome to the forum @zozo1505

You've had so e great pointers already, and it is great that you’ve found the forum for tips, strategies and perhaps most of all support and encouragement

The first thing to say is that you are not alone. I love that list that @stephknits shared, because it just shows how hard T1 can be to manage day to day. There are all sorts of factors in play, and some of them you have little or no control over, so you mustn’t beat yourself up when things go out of kilter.

Perfection is an illusion, and it can be easy to feel that everyonehas everything sorted and just swans along with perfect BG all the time - but that is absolutely not the case. Everyone struggles from time to time. Everyone gets weighed down with the relentlessness of it. Everyone has ‘WHAAAAT!??!’ results every so often - with no explanation.

But that doesn’t mean it isn’t worth trying, and that there is no point, or that there is nothing that can be done. Absolutely everyone could make some tweaks and changes and get better levels (perfection isn‘t possible, so there’s no point in beating yourself up) but also the things that you *are* doing are improving your BGs. So keep going!

As Arthur Ashe once said - to achieve greatness start where you are, use what you have, do what you can.

The online courses like BERTIE might be a very helpful refresher. As might having a conversation with your Dad about carb counts (I weigh the dry ingredients of things like pasta/rice so I know that a third of the pan when it’s finished will be x grams of carbs etc)

It might also really help to check your basal insulin to make sure it is working as it should - this was one of the biggest changes for me that I discovered on a forum, and it made an awful lot of BG chaos fall into line when I got my basal dose adjusted properly

See: http://www.diabetes-support.org.uk/info/?page_id=120

And lastly... expect things to change and to need tweaking after a while. There are no ‘right doses’ there are only the ones that are effective right now - and next week, or next month you might need to tweak them and alter dose timings (waiting longer or shorter between dose and actially eating)

Good luck!
 
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I'm personally very fond of the basal testing article Mike's posted the link for, above. It's by no means an instant cure - but it does highlight times of day that need some attention so when you have a full 24hrs worth of BG results from doing it, tell the forum what figures you got so we can make suggestions on what you could try to see if it helps. I always think that unless you can get your basal insulin and timing as near to good as you can (cos you never achieve perfection since you're not a functioning pancreas and neither are any of us!) it's a bit of a waste of effort trying to mess about with bolus doses. Sometimes when something untoward happens, we all have to 'fire fight' temporarily but that's not a very comfortable way of living permanently.

I'm all for a comfy life, me!
 
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