Hi

[Mar1g0ld]

Hi my name is Mari, I’m 37 and yesterday got the shock diagnosis of type 1 diabetes. Now trying to get my head around blood sugars and insulin. I am a biomedical scientist by profession so hoping my science background will hold me in good stead. I’m determined to control this so it doesn’t control me!

 

[ColinUK]

That’s clearly going to be a shock but yes hopefully you might find a deeper understanding of what’s what because of your inherent knowledge.

I’m t2 so can’t really offer more than a hello and welcome but we’ve plenty of T1’s here who can help you get to grips with everything.

So how did you come to be diagnosed?
What insulin are you on?
Are there any initial questions/fears gnawing away which we can help with?

 

[nonethewiser]

With your background it won't be long before you get to grips with condition, won't happen straight away so don't expect it to, good luck anyway.

 

[SB2015]

Welcome to the forum @Mar1g0ld and I am glad that you have found us.

Diagnosis at any age is a shock and it takes a bit of getting used to and is a steep learning curve at the start, BUT it does get easier. The best analogy I was given is that it is like learning to drive. It feels like there is a lot to think about at the start and then much of it becomes automatic.

Your science background will help you deal with the necessary daily calculations around counting carbohydrates and making adjustments to your insulin doses, which may be a little way down the line, but don’t expect perfection with glucose levels. It is impossible, and each of us just has to do the best that we can.

If you are happy to tell us a bit about how you were diagnosed and what insulins you are using, it will help us to tailor our responses.

There is plenty of experience to tap into on here so you have come to a good place. Whatever questions arise, just ask. Nothing is considered silly on here.

 

[Mar1g0ld]

Thanks folks. So I had an approx 8 week history of various symptoms including extreme thirst, frequent urinating, weight loss +++ without trying, fatigue. However in early March our household had covid and during isolation my 3 year old broke his leg. So there was plenty to put the symptoms down to with a viral infection and stress. The symptoms didn’t subside and were quite physical so I booked in for bloods with my surgery. They dipped my urine while I was there and both glucose and ketones were way up. They pricked my finger and blood levels were also elevated (28 and 5.4 respectively). I was rushed to A&E and spent the day at the hospital where I work on Thursday. Thankfully all other blood results were fine so I was given some saline and spoke to the diabetic nurses. They showed me how to use both the blood glucose and ketones monitors and sent me home with novo rapid insulin to be taken before meal times (6, 4 and 6 units) and lantus to be taken before bed at 12 units. My glucose is still up and down but I am getting some wonderful support from the nurses. I’m already starting to feel better ❤️‍

 

[trophywench]

Hi Mari - welcome to the club no-one ever applied to join! You'll soon find out that we have some very nice helpful members though - I should hope. First off though, you do have to remember that because we're not exclusively Type 1s, sometimes folk make suggestions which aren't exactly appropriate to T1. This can be a bit confusing sometimes, especially when the person they're trying to assist is still at the 'KISS' stage with their D, but until another T1 notices and corrects them well they didn't know that - so it's part of the learning curve for them, too!

Our DSNs should be like extra mates - like people we've known since we started school, who we can be 100% honest with, however only available during working hours so they do have their limitations 😉 and some of em aren't quite as 'specialist' as others. Mine told me the other week to increase one of my bolus doses by far too much and I thought at the time, blimey, that's a lot for me all at once - and I was 100% correct about that - but if after this long I didn't know more about my own body and my own D than her, that's not exactly a surprise either. So I reduced the extra, and it seems to be OK now, but for how long of course, is anyone's guess.

That brings me around to the slightly wrong terminology you've used in saying you want to control your D rather than it control you. Oooh yes, of course I agree 100% with the sentiment but it's just that D cannot actually be 100% controlled (42+ reasons that might affect BG at any time) but it can rather be managed successfully - so please try to think of it as management rather than control, if you don't want to be disappointed.

Jolly good luck with it and as soon as you're ready to ask questions, fire away.

 

[Jago]

Hey Mari,

I was also in my late 30’s when I was diagnosed. I vividly remember the whirlwind of leaving hospital newly diagnosed and fairly clueless - more than a little shocked and emotionally lost at sea- so make sure you give yourself time to come to terms with your diagnosis.

It was reading that really helped me feel more in control and allowed me to better manage my diabetes; and perhaps more importantly better understand, speak to, and get the most from my diabetes team.

There are two books which really helped me learn about diabetes - and I would reccomend either or both:

Think Like a Pancreas by Garry Scheiner.
and:
Take Control of Type 1 Diabetes - Dr David Cavan

This website and forum are also both great resources.

Another great source of knowledge, and something that really helped me feel more in control of the situation was getting a freestyle Libre (there are other options available) - getting near real-time data allows one to better understand the effects of both insulin and food - and allowed me to change my doses (both basel and bolus) to meet the needs of my body/diet - the low sugar alarm made me much more relaxed about exercising!

On the whole control vs managment debate that sometimes crops up, I’m perhaps going to go out on a limb and say that I think there is nothing wrong with wanting to control your diabetes - but do so accepting that a bit like trying to control a wild animal, a group of festival goers, or a gaggle of toddlers - you’ll never get it right all the time - equally, there’s nothing wrong with wanting to manage it (with the same caveat)! I think we should use the words that make sense to and help us… when I talk about my diabetes I talk about seeking to control probably more than I do trying to manage it (and that works for me)… but I use both, and whichever word I use - I accept that I won’t always succeed- and that that’s fine as well.

Wishing you the best of luck on your journey- you’ll be amazed at how quickly diabetes just becomes another facet of your life and story.

 

[trophywench]

Yep - it's the being able to accept that some times we don't control well for whatever reason, it that any number of folk seem to have terrible trouble accepting in this day and age.

To err is human, to forgive divine.

I'm defo human but obviously have godlike traits as I'm also able to forgive myself quite easily! 😉

 

[Mar1g0ld]

Hey Mari,

I was also in my late 30’s when I was diagnosed. I vividly remember the whirlwind of leaving hospital newly diagnosed and fairly clueless - more than a little shocked and emotionally lost at sea- so make sure you give yourself time to come to terms with your diagnosis.

It was reading that really helped me feel more in control and allowed me to better manage my diabetes; and perhaps more importantly better understand, speak to, and get the most from my diabetes team.

There are two books which really helped me learn about diabetes - and I would reccomend either or both:

Think Like a Pancreas by Garry Scheiner.
and:
Take Control of Type 1 Diabetes - Dr David Cavan

This website and forum are also both great resources.

Another great source of knowledge, and something that really helped me feel more in control of the situation was getting a freestyle Libre (there are other options available) - getting near real-time data allows one to better understand the effects of both insulin and food - and allowed me to change my doses (both basel and bolus) to meet the needs of my body/diet - the low sugar alarm made me much more relaxed about exercising!

On the whole control vs managment debate that sometimes crops up, I’m perhaps going to go out on a limb and say that I think there is nothing wrong with wanting to control your diabetes - but do so accepting that a bit like trying to control a wild animal, a group of festival goers, or a gaggle of toddlers - you’ll never get it right all the time - equally, there’s nothing wrong with wanting to manage it (with the same caveat)! I think we should use the words that make sense to and help us… when I talk about my diabetes I talk about seeking to control probably more than I do trying to manage it (and that works for me)… but I use both, and whichever word I use - I accept that I won’t always succeed- and that that’s fine as well.

Wishing you the best of luck on your journey- you’ll be amazed at how quickly diabetes just becomes another facet of your life and story.

Thanks for this encouraging and honest response. I will definitely check out those books. I had used the word ‘control’ without really considering other words. But on reflection ‘control’ is definitely what I mean at the moment.

 

[trophywench]

Ah well when you achieve good management, it does wonders for the ego, cos at the mo if you're anything like I was, it all seems beyond my control. It stayed like that for 30+ years before they showed me how to count the carbs and adjust my own doses. These days, they do that a LOT sooner than they ever used to - to be absolutely fair they hadn't invented insulin one could do that with every meal so it was much a case of fixed doses and fixed amounts of carbs at fixed times throughout the day.

Whilst I had learned this, that and some other over the years it was like being reborn, almost - the penny dropped with a resounding thud, and at the same time the utter relief of having that same weight removed from my back was almost euphoric. Shame I was having a complete mental breakdown at the same time and it was because I had absolutely zilch control of my brain or the people/things stressing me (work, certain wider family members) that I decided sod it and sod them - I'm going to be 100% selfish here and spend some proper time doing something ONLY for ME for a change. These days - you'll get that 'training' almost automatically - the main difficulty right now unfortunately being they have all had to cut back on what they're providing because the NHS is struggling - BUT when you're ready - there are now other ways - and it was the very same Dr David Cavan (author of one of the books recommended by @Jago) who originally instigated an online course which is still going strong now! (and some of us helped Beta Test the original version of, for him, before it went live!)

TMI - you will get there, honestly you will - but it does simply, take time!

 

[everydayupsanddowns]

Welcome to the forum @Mar1g0ld

Glad you have found us, and hope that we can become a useful sounding board, source of support and encouragement, and sometimes just a safe space to go, “AAAAAARRRRGGGHHHH!” when your diabetes doesn’t play ball for whatever reason, or suddenly changes the rules and moves the goalposts when you least expect it.

I really hope your analytical brain and your science background help you get to grips with things (whichever word you prefer to use!), and that you will be able to be kind to yourself and non-judgemental when despite your best efforts and most careful planning and preparation, things happen outside of your control. Even if it’s just that the dose and injection timing for a consistent meal that you have carefully worked out just suddenly stops working well for a week.

There is science to good pancreas impersonation, but there’s an art to it as well (and a dark art at times too!) 🙂

Be encouraged that there has never been a better time to get a T1 diagnosis. Modern treatment options, and tech, make effective BG juggling more possible than ever, and many members here are long-standing T1s with little long-term damage as a result of their diabetes. I’ve been playing the game for 30 years, and it’s never stopped me doing anything I wanted to do. Just some things need a bit more prep and forethought 🙂

 

[helli]

Welcome to the forum @Mar1g0ld
I too was diagnosed with Type 1 in my 30s
That was 18 years ago now but my memory of fear is still clear.
Since then, things have got easier and, as an engineer (like you as a scientist), I feel I have an advantage.

One piece of advice I would give you is, unlike your goal, don't try to control diabetes. There are way too many things which can affect our blood sugars that successfully doing the job of an organ whilst living a full life is impossible.
My advice is to manage diabetes. If you try to control it, it will take over your life.

I feel lucky to have diabetes now with all the tech that is available. Things have moved on in my diabetes life and I am a relative newbie. It is wonderful to hear the stories of the old timers and realise they spent most of their diabetes life testing blood sugars in urine and injecting mixed insulin with syringes.
Yes, it takes time to understand your diabetes, and I am constantly learning. But I feel it has been easier to get to grips with it using carb counting and CGMs and basal bolus insulin regimes than it must have been in the past, especially as a scientist who is used to analysing data.

Feel free to ask questions, have a rant when things don't go to plan or even have a giggle.