terrified

[Pending]

hi

slightly over a week ago i was severely ill after being in hospital for a couple days on drips and insulin i was told i had diabetes probably type 1 because i had high ketones.

i have been out approx a week now on the 24 hour insulin injection and novorapid. still constantly high blood sugar numbers "12-20". im not over eating i had one slice of toast for lunch with my 6 novorapid.

im not confirmed type 1 yet but they said its likely. type 2 runs in family...

i have looked up about type 1 and seen terrifying things like im likely to die before im 70 "29 male"

im just looking for advice reassurance etc

 

[Uller]

Hi Pending, welcome to the forum. Sorry to hear about your diagnosis, but first thing is not to panic!

You’ve come to the right place for advice, I’m only a year and a half in and the advice I’ve received on here has been invaluable in controlling the condition.

Some of the best advice has been to remember it’s a marathon, not a sprint. You have to pace yourself.

Your levels may take a while to settle and you might need some adjustments to your insulin intake.
In the meantime has anyone spoken to you about your carbohydrate intake? There are plenty of threads and topics on here about what you might want to avoid that can help with controlling your blood glucose levels.

There are plenty of folks on here that have had a form of D for many years with good control and good health, I think it just takes a bit of awareness and finding out what works for you.

Hopefully that bit of shock wears off soon 🙂

 

[Copepod]

Welcome to the forum, pending.
Please don't be scared - there are plenty of people with type 1 or type 2 diabetes aged well over 70 years, and with treatment, including self monitoring technology, improving all the time, survival rates are including.
Insulin doses need to build up gradually, to avoid feelings of "false hypos", because your body has got used to higher levels.

 

[Pending]

hi thanks for the replies.

i have seen the diabetic nurse thats all so far. she just ran through how to inject and dispose of needles etc.

my carb counting appointment isnt till friday.

 

[Maz2]

Hello Pending and welcome to the Forum. I don't know much about Type I but used to work with a girl whose sister had been Type 1 for 39 years. My understanding is that, if it is kept under reasonable control most of the time, you can live a long life with it.

 

[Pending]

im hoping it comes back that im not type 1. as far as im aware no one in the family has type 1 alot has type 2.

theyre assuming so far that i am type 1 as i had ketone issues but i have read type 2 can also get issues

 

[everydayupsanddowns]

If anything @Pending - even though it doesn’t seem like it right now, it might work out better for you to get a tick in the T1 box, just because there are some therapy options (eg insulin pump/islet transplant) which would not be open to you as T2.

At the end of the day, while both types are quite different in some ways, there are many similarities.

Rest assured the horror stories you’ve seen about T1 and life expectancy are quite old, and these days there are many ways to manage T1 effectively and reduce risk of long-term nasties.

We have members here with 5+ decades of T1 experience under their belts who are still in very good health.

 

[Pending]

If anything @Pending - even though it doesn’t seem like it right now, it might work out better for you to get a tick in the T1 box, just because there are some therapy options (eg insulin pump/islet transplant) which would not be open to you as T2.

At the end of the day, while both types are quite different in some ways, there are many similarities.

Rest assured the horror stories you’ve seen about T1 and life expectancy are quite old, and these days there are many ways to manage T1 effectively and reduce risk of long-term nasties.

We have members here with 5+ decades of T1 experience under their belts who are still in very good health.

hi thanks for replying. truth be told the information i read said essentially even with treatments its doubtful a t1 male would live past 66 with most not making it past 5 years after diag. at best losing 12 years off the national average.

its truely terrifying i wasnt told and didnt know being told i have diabetes is such a death sentance. im 29 and feel like i have to start looking up funeral plans

 

[everydayupsanddowns]

What you have read is outrageously inaccurate. 5 year survival expectancy???

I was diagnosed at 21, just a few years before you. Nearly 27 years later - no complications and I have never felt that T1 stopped me from doing anything I wanted to do. I’ve travelled, started own business, met and married love of my life, helped raise a family, run half marathon and several 10kms, enjoyed lots and lots of lovely lovely food.

The life expectancy thing rumbles around every so often, but it’s about averages, and there are no guarantees.

Keep working, keep checking BG, keep counting carbs, keep learning, keep sharing your experiences/ hopes/ worries/ frustrations here.

Joslin Centre in US has a medalist scheme for 50, 60 and 70 year T1s. There are lots of members! And when they started there weren’t the fancy gadgets and insulins we use now.

 

[JMyrtle]

I'm new to the forum having been diagnosed as type 2 a couple of months ago and just scrolling thru the topics but had to jump in to say that our next door neighbour is type 1, has been for years, is nearly 70 years of age and goes to Las Vagas several times a year on his hold, so no need to give up just yet.

 

[Lisa66]

Hi, sorry you're feeling so worried. It's all very new and like anything new will take a bit of getting used to. It's only natural to feel concerned. As others have already said, the information you've found is incredibly inaccurate, sorry you came across it.

I was diagnosed type 1 nearly 40 years ago when I was 11 and compared to many on this forum I'm quite a newbie! Back in the early days people often felt they had to tell my mum and I scary stories about great auntie so and so...turned out these great aunts and uncles didn't lead healthy lives and take care of themselves. I keep fit and well, I've done all the things my friends do...quite a bit more than some...I travel, I play sport, I have a family, in fact it's a healthy normal life style with a few tweaks, that very quickly become second nature...honest. People are usually surprised when I tell them I have diabetes. On this forum there are runners, walkers, long distance cyclists, marathon runners.....

Write down ALL your concerns and questions to ask your nurse, none of them will be silly, the nurses have usually heard them all before...we've all been there. Don't keep any concerns to yourself...ask.

It's often easier said than done, we all do it...but don't over google! 🙂 Stick with properly recognised sites, your medical team and the positive helpful people on this forum. They're a mine of information and positivity! It's quite a learning curve, but you'll get there!🙂

 

[trophywench]

Excuse me swearing, Pending old thing - but I'm 67 and I bloody well don't intend to pop my clogs ANY time in the next 3 years! yeah there are horror stories same as there are about all sorts of health problems, along with the accidents you might have eg crossing the road, or getting out of bed and falling downstairs - yeah you could break your neck doing that, couldn't you?

On the other hand there's me, been T1 for 45 years and I tell you what mate - I fell (up a speed bump!!) on October 14th and broke my patella - and it's been FAR more trouble to me and my poor ole husband, since then, than the previous 45 years diabetes has!

Like the falling downstairs and breaking your neck tales - ignore the doom and gloom merchants and concentrate on learning how to manage your diabetes so that it can't have any traumatic effect on your life! You do have to learn - but it's all logical once someone who is capable explains it all properly and tells you what you can do about all the glitches you may come across. However it's a massive subject - and it takes time.

It's a marathon not a sprint, so train steadily at a moderate pace for as long as it takes!

 

[AJLang]

I'm sorry to hear that you've been so scared but please try not to worry. I've been Type 1 for 46 years since I was 2 years old and I've had, and I'm having a great life. I haven't let the diabetes get in the way and have done things that aren't usual for somebody from my working class background and I haven't let the diabetes include these. Examples include gaining my PhD in my 30's, having an academic career, travelling to places such as the Lebanon and Israel and dancing with Benny from Abba after gatecrashing his party (I didn't get thrown out and I have the photos). I've also written 15,000 words of a novel. Unfortunately I did have to take ill health retirement at 43 but that was because of Chronic Fatigue Syndrome - absolutely nothing to do with diabetes. So pleased don't get scared of the stories you read but it is important to do the best you can to control diabetes - that doesn't mean perfect control but doing your best is important.

 

[Pending]

thanks for all the replies. its great to know there is somewhere i can vent / express concerns with people in the same position 🙂

 

[SB2015]

Hi Pending

Sorry to hear about your diagnosis, but please don’t read those horror stories. The current treatment options have only been available in the last 15 years and have made so much difference enabling us to live a full life, making the Diabetes fit in with what we want to do, consequently the long term and very long term property are good, especially if you make use of all the fantastic advice that is available from the many supportive people on here.

In addition to this forum, one resource I would recommend is Type 1 Diabetes in children adolescents and young adults by Ragnar Hanas. The age reference is irrelevant (I was 53 when diagnosed, and like you no other people in the family have had it) and I find it an excellent book with very clear explanations. I find if I understand what I have to do it is a lot easier to stick to the plan.

Keep coming on with questions (thee are no silly questions, just ask) and you will get greta help and practical advice.

 

[trophywench]

Plenty of people survived beyond 70 before the current treatment options were available too, SB ! Just cos there was no social media to talk about it, it wasn't exactly publicised!

 

[Lisa66]

Being an annoyingly glass half full person, I also think, all things being equal etc and as long as no double decker buses drive through my garden as I step out the door...that as we have routine tests, that will pick up all sorts of conditions that non diabetics can get and don't routinely get tested for potentially we could live longer!🙂 Any minor health queries, certainly in my experience, get extra care and attention because we have diabetes. I mentioned just in passing recently, something to the dr regarding excercise and although she wasn't overly concerned, as I'd had diabetes for a while she said let's just check. Soon followed a cardiac appt, tests, heart pics (?) and treadmill test and a letter arrived last week to say all good, heart good and I'm in lowest risk category! Who'd have thought? Not a lot of people I've come across over the years..ha ha 🙂

I hope you're feeling a little less worried than you were after everyone's posts. (Apologies for ramble)

 

[SB2015]

Plenty of people survived beyond 70 before the current treatment options were available too, SB ! Just cos there was no social media to talk about it, it wasn't exactly publicised!

I just remember my Consultant describing how different the waiting room is nowadays.
I did go to a presentation for 70 year badge recently.
She says she has been sensible and reaped the benefits.

 

[Bruce Stephens]

While it sucks to get this diagnosis, on the positive side it's the best time to have it (so far). We have all these tiny glucometers (they didn't always fit into a pocket), much better insulins in much more convenient forms (insulin pens with uniform strength are much nicer to deal with than metal and glass syringes and less predictable insulin in vials of differing strengths).
And (more recently) we've got much more affordable not-quite-CGM in the form of Freestyle Libre (with maybe a couple of others in the near future). Admittedly, NICE isn't convinced of their cost effectiveness, but maybe either the price or the perceived value will change and they'll eventually be sensibly funded.