I've been a Type 1 Diabetic for 19 years AMA

[Gem176]

Exactly as the title says.....

Hi, how has your regime changed in that time and what do you hope for from technology in the future?

Do you think we will see a cure?

Has it got in the way of you living your life?

@NorthernNic when I was first diagnosed I took two injections a day of one type of insulin, had to test blood glucose with a finger prick and was told to eat starchy carbs and avoid sugary things. I now have two different types of insulin, I inject whenever I eat and to correct any higher than ideal readings (during pregnancy I was injecting up to 17 times a day 🙈), I have a continual glucose monitor that reads my glucose 24/7 and no longer have to finger prick, no food is off limits as I carb count everything I eat and I can skip meals if I'm not hungry. So much more freedom now.

@Tuliprain depends on what you mean by a cure. I think technology and the access to it will continue to improve and the closest we will get to a cure would be some kind of long term device, akin to a pacemaker, being fitted to manage our blood glucose and deliver insulin that is as close to natural human insulin as possible. An artificial pancreas. I think people will still have the autoimmune disorder where their body attacks insulin producing cells and their pancreas fails to produce insulin but the treatment will be automated and minimally invasive.
As for getting in the way of my life, yes and no. Has it stopped me doing any of the things I want to do, no, not really. A few things I cannot do career wise because of it but it hasn't stopped me having a career. In more general terms in gets in the way of my life every single day. Remembering kit wherever I go, sensor changes, weighing almost everything I eat, calculating insulin ratios, dealing with lows and highs. It's constantly and unrelentingly there and I can never switch off from it. I did a diabetes calculator recently that told me I'd spent over 9,000 hours recovering from hypos (low blood glucose) in my time with diabetes. A year is 8,760 hours. So as a diabetic I spend more than 5% of my time recovering from hypos! Mad!

How do you manage things like alcohol, dancing and late nights? Asking to better understand how challenging drinking and partying will be for a young T1 family member as they progress through teens, lots of peer pressure…

@timeisnotaline I'm probably not the best to advise on that one as my drinking and partying days are long behind me (31 with a child and a baby). When I was doing the whole clubbing thing treatment was quite different to how it is now and my solution was probably not the best. I used full sugar mixers, always had a takeaway on the way home 🙈 and very much had the attitude of "tomorrow's problem"! I was always warned of the dangers of hypos while sleeping after drinking. I'm sure your family member will find what works for them as diabetes is very much unique to each person. There are fantastic groups on fb, very supportive and have a vast amount of experience. They are my go to for "top-up" advice after getting the official medical advice from my team.

Thank you for asking, the whole point of this post was for people to ask in order to help understand type 1 a bit better. Whether that be to help a family member or just to ask something that you have always wondered but felt rude/uncomfortable asking anyone you actually know with diabetes.

Thanks @Gem176. I’m afraid that response is terrifying! I have what would be an older t1 relative except that they died in their sleep when they were a bit older than you are, close to 20 years ago, and the coroners theory was went into a hypo in their sleep. So we are all very aware of the risks (there was no partying involved by the way). But monitoring and management technology is so much better these days, everything crossed that kind of thing is rare these days.

I think and hope it is rare these days! I just want to hear if the breaking news that they’ve found a cure. I know it’s unlikely but how amazing would that be.

If it's not too personal a question...do you remember ever accepting the condition?
My DS was diagnosed at 5 and just got on with it for a few years, however now he's older and has taken on more of the management himself he's really struggling to accept it. He's become very anxious over the past couple of years and I really think diabetes is the root cause (which I completely understand).

@timeisnotaline that is truly tragic, I'm very sorry for your family's loss 
When I said tomorrow's problem I meant the inevitable high blood sugar. It's prolonged exposure to high blood sugar that does damage so the few hours of being higher than ideal was safer than risking a low overnight while sleeping heavily after drinking and without the liver glucose as a back up as it's busy processing alcohol.
As @Tuliprain says it's rare now as treatment isn't quite so analogue and rigid. We also have excellent tech that alerts us to overnight lows and can be set to alert others too.

@NorthernNic in all honesty I've never accepted it, I tried and that just made me go sod it, it's won and I'm done! I completely gave up, did that for YEARS. I'm quite headstrong so now I frame it as a fight and one that I will win. It's me against type 1. That may not work for everyone but it works for me. I set my ranges quite strictly and every time I hit 80% spent between 4 and 8 I take that as a victory and a big F you to type 1.
On the diabetes page on here there is a thread about clinic visits, I've put a comment on there, it's quite long so I won't repost here but go have a look if you want. It covers one of the many struggles, consultant appointments/clinic visits.

At what age did your parents trust you to take control of ordering your insulin and equipment and did you make any mistakes when you did?
Trusting my son to order his own stuff will be happening in the very near future but we're already having issues. He's supposed to tell me when he thinks he needs prescriptions and last week I didn't double check like usually do so now we're about to have a weekend full of anxiety as he's running low on testing strips.

Thank you for your honesty for you and a massive virtual hug. I think all T1s are absolute hero's dealing with such a relentless pain in the arse like you do x

@Stormyinacoffeemug I think I sort of always did. We had a small drawer in a Welsh dresser that that had a pile of repeat prescription slips in so I just filled one out whenever I needed something and my mumdropped it into the surgery for me. We lived in a small village and the chemist was right where our school bus stopped so I'd collect on my way home.
At some point it changes to online for repeats and I was one of the first to use their system as most getting regular repeats were older so they trialled it on the adolescent 😂

I've forgotten to order many times over the years and have just gone to my chemist and been given an emergency prescription, don't have a weekend of worry, it's definitely worth going to your pharmacy.

Thank you for the question, remembering that Welsh dresser and the start of the online system was a lovely wander down memory lane, it's funny the things you forget until you think about them.

@NorthernNic you are more than welcome, there is absolutely nothing I won't answer about diabetes which is funny considering I used to refuse to take my insulin in public!!

Thank you for your reply.
We have already tried the emergency prescription, however, the specific testing strips he uses have to be specially ordered. I've managed to get some on amazon prime to be delivered tonight as its now an emergency. I'm hoping this situation will teach him a big responsibility lesson.

@Stormyinacoffeemug it probably won't if I'm being perfectly honest. I've run out of the same things more than once 🙈 I'm sure in general he will remember but sometimes we all slip up. As a teen it's just the way their brains are wired abd as an adult it's because we are busy and forgetful.
Has he considered a flash or cgm? Would make testing strips less of a necessity and they really do make the world of difference! I was so against having something attached to me but now I wouldn't be without mine. Coming up a year using it now.

He trialed the freestyle libre but was allergic to the adhesive that helps it stick to your arm (he's also allergic to plasters). They haven't suggested any other device.

Thank you btw

@Stormyinacoffeemug ah that's a pain. I was on libre to start with but I'm now on dexcom g6 but I've seen people mention an issue with the adhesive with those too but dexcom did change the adhesive recently.
Have you tried any of the barrier creams/sprays? Cavilon springs to kind as does Derma something. Someone I know uses pirinase nasal spray, covers the area where sensor will go, leaves to dry then inserts. Works very well. They really are amazing and I'd hate anyone to miss out if there is a workaround.

You may regret inviting us to ask questions now 😁..... In your opinion what are the pros and cons of Dexcom Vs Libre?

@NorthernNic not a chance, I've decided my mission in life is to improve diabetes for others and if that means answering a million questions then so be it.

I was in libre 2 so the only benefit of dexcom is that it is cgm rather than flash. The benefits of cgm to me is that I can literally swipe my phone and see where I'm at with a glance. When I'm driving I've set my car to read the widget (well DP has, I'm not that tech minded with the car😂) so I use voice control and it tells me my BG (this blows my mind, my car tells me my blood sugar!!! I used to finger prick and wait 10 seconds for a reading!!).

Also as a bonus with dex my DP gets real time readings on his phone and an alarm when I have an urgent low which is reassuring when at home with a baby. He phones from work to check I'm not unconscious, we probably shouldn't laugh about this as it's serious but if you don't laugh, you cry right?!

I have dex funded for a year as a trial and will take badly to going back to scanning if it doesn't continue but that's just pure laziness. In fairness though I hated dex to begin with, the alarms drove me absolutely insane! I've turned most off now because they are a bit intrusive and very annoying!!