Type 1 for 36 years

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Ashy

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Hello everyone. I'm Matt, and I was diagnosed with Type 1 Diabetes at the age of ten. Over 36 years I've seen the change from stick tests with colour charts, insulin vials and disposable syringes, and pretty blunt combined insulin (Human Mixtard), to the far more flexible basal-bolus regimes of today.

I've managed to avoid major complications other than background retinopathy. I am also epileptic following a traumatic brain injury and emergency craniotomy nearly ten years ago.

Next week I am doing the DAFNE course so that I can bring myself up to speed on the best approach to diabetes management today.
 
Welcome @Ashy 🙂 I’ve had Type 1 a few years less than you, but remember the mixed insulins and also doing my own mix where you had to draw up the insulins in the right order. As you say, much better now!
 
Hi and welcome from me too.

I am fortunate to have been diagnosed much later in life so only have 5.5 years under my belt, but really appreciate the modern insulins and technology like Libre.
Hope you enjoy your DAFNE course. Is it a week long course or one day a week? I really enjoyed spending time with other Type 1s and learning from each other. I have been a member of this forum since diagnosis, so I am very aware of how individual diabetes can be, but the DAFNE course really emphasised that and taught me how to problem solve for many situations that I had not considered or experienced t that time. I think the biggest thing it gave me was confidence to adjust my basal insulin doses and that has been a real turning point for me as my basal needs are quite variable, particularly my night time ones, so gaining the confidence to adjust my basal made a big difference for me.
I will confess that I don't really follow much, if any, of the DAFNE principles, partly because I follow a low carb way of eating and have to inject for protein after my meals as well as some up front for the carbs I have, but it was still well worth attending and having that experience and improving my diabetes understanding and spending time with other insulin dependent people.
 
Inka said:
I’ve had Type 1 a few years less than you, but remember the mixed insulins and also doing my own mix where you had to draw up the insulins in the right order.
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I've had T1 for over 40 years and honestly don't remember mixed insulins, but I guess that's what I must have been using. I only remember using one kind of insulin twice a day, which fits better with a mixed insulin. It's also quite possible I'm just not remembering (it was a while ago, after all). I do remember the changeover to U100 (GMO produced) insulins which made things much simpler (before then insulin was usually less strong (so you had to inject a larger volume) and didn't always come in the same strength).

I also missed out on the modern structured education initially and was only invited fairly recently (well, 5 years or so ago now, I guess). Not called DAFNE but I'm sure it was similar in content and structure. I found it really valuable. That one had only people who (like me) had had diabetes for years. Some people here have complained that the course they went on was a bit slow because the other people were fairly newly diagnosed participants, so I'm sure that can happen.
 
Hi @Ashy and welcome to the forum from me too!

Gosh that's some experience you must have gathered! We always welcome our users to share it with others - the good and the bad. That's because as Rebrascora has mentioned - it's so incredibly individual, that any similarities can give people a peace of mind, especially when they're new to all of this and don't know what to expect.

Hope you enjoy the course and let us know how it went!
 
Thanks everyone.

The DAFNE course, at Florence Nightingale Hospital in Derby, is Tuesday to Thursday this coming week, and Tuesday to Wednesday the following week. It feels like a good time for a refresher, especially having just switched to FIASP and Levemir (from Lyumjev and Tresiba). I did use Levemir for a long time before, with NovoRapid, but not splitting the dose as the DSN suggests is better. For the first time I also have a pen capable of half units, so it will be interesting to see whether or not that becomes useful.
 
Half unit pens are extremely useful IMO @Ashy You won’t know what you did without one! I’ve never done a DAFNE course, but I’m sure the best part will be meeting other Type 1s as @rebrascora says.
 
Hi Ashy! Welcome to the forum... you know me from Facebook. 🙂
 
Is there a particular reason for changing both your insulins? I would have thought Lyumjev was pretty similar to Fiasp, so a bit surprised at that swap but Tresiba to Levemir is a big change.
I absolutely love Levemir and it's flexibility and I use Fiasp as my fast acting but it took 2x 3 month very frustrating trials of it before I found a way to make the Fiasp work for me and I have to break quite a lot of "the rules" to do so. Things like stacking corrections and doing corrections under 10mmols are pretty much essential for me with Fiasp but maybe part of that is because I follow a low carb way of eating. That said, I wouldn't go back to Novo(not so)Rapid now and I really like the short activity time with Fiasp.... it is generally finished working after 3 hours for me.
I am not sure I could cope with changing both basal and bolus insulin at the same time and would definitely want some very good reasons to attempt it but perhaps you are more relaxed about your diabetes management and hopefully you will find the Lyumjev to Fiasp a straightforward swap.
Interesting that your DAFNE is spread over 2 weeks and I think that is probably a better format than a straight week. Will be interested to hear how you get on both with the new insulins and the DAFNE.
 
rebrascora said:
Interesting that your DAFNE is spread over 2 weeks and I think that is probably a better format than a straight week.
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The local one I went on was an hour or two once a week for 4 weeks. An obvious advantage is we could try things and look at the result the next week.
 
Welcome Matt (from another Matt!) - I'm a relative newbie with only 2yrs since dignosis but was lucky enough to get on a DAFNE course in February this year and have found it very useful and informative - and as mentioned before, it's great to meet other T1's in person and hear and share experiences - in terms of courses being full of newbies that was the complete opposite on my one (I was by far the newest, still in honeymoon period, taking miniscule amounts of insulin compared to others (this has changed over the last 6 months!!)) - my insulin was changed from Novorapid to Fiasp on the 1st day of the course and have found the quicker and short-lasting activity to be great (we are all different though) - and my long-acting was changed from Lantus to Levemir when I went for the DAFNE follow-up a month after (another great change for me as it gives me more flexibility) - And half-unit pens are definitely the way forward (I've been lucky to have had one from the start) - Good luck with the new insulins and really hope you enjoy the DAFNE course as much as I did (and I like the idea of spreading it over 2 weeks, that sounds genius!) - let us know how you get on
 
Ashy said:
The DAFNE course, at Florence Nightingale Hospital in Derby, is Tuesday to Thursday this coming week, and Tuesday to Wednesday the following week. It feels like a good time for a refresher,
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Hope you get on well with it @Ashy

Let is know how you get on. Good luck with the insulin switch 🙂
 
I've got nearly 39 years under my belt, though I stuck with DIY mixing insulin (S & I, though with a Mixtard-50 pen for nights out) until 2016. I should have changed sooner, but it did work though in hindsight it tapered towards not working so well in the 10 years leading up to my finally taking the plunge. It was very hard to judge when to make a large change like that (with potential disruption to work, childcare and drop-offs for my kids, etc.)

I've yet to do a DAFNE course, the only ones on offer when I moved to MDI were a full week, which I couldn't fit in, it would be interesting to hear how you find it @Ashy, perhaps, similarly to the move to MDI I should accept people's advice and try it if it's recommended! 😉 especially if it can be done a few hours per week or similar as @Bruce Stephens mentions (and I see you also thought it was of value).
 
I know it's a bit late but...hello and welcome to the forum @Ashy.
 
I hope that the course goes well @Ashy
I found it very helpful, especially learning from others on the course. This was all before the existence of sensors. Half unit pens were definitely a bonus. It enabled me to do finer adjustments.

Let us know how you get on.
 
Good evening Matt! I have had decades more urine tests than you. I imagine you avoided the glass syringes you had to boil and the needles that you had to resharpen. Those early years have now caught up with me, and I have a LBKA and RDMO..

For courses I did the BERTIE online one but found 90% was old hat
 
Hi all. I did the first three days of the course last week and found it very helpful, both catching up on the latest thinking from the DSN and Dietician, and also because of the contact with other Type 1s. Days 4-5 are tomorrow and Wednesday.
 
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