feeling lost and just sad

Status
Not open for further replies.
P

Pending

Member
hey,

been type 1 for 7 years now no complications. recently been moved onto the artificial pancreas with dexcom and tandem. "new insulin aswell"

recently been reading posts about life expectancy and issues, then also some about a1c being over 5.6 and your basically asking for issues its just put me into a depression.

its got to the point i dont want to eat anymore and when i do with the new insulin im so worried about over counting the carbs and going low that i under count and go abit higher. my ketones are going higher and im losing weight because im just not eating enough carbs.

i keep trying to reassure myself if i do well count well keep things under good control i can avoid issues but i feel like im lying to myself and its inevitable.

im just struggling and wish i could vent and be sad with just anyone that actually understands
 
Hard work isn’t it! My daughter is type 1 and 6 years old, there is no off switch which is so tiring. I definitely try not to read life expectancy pieces although I suppose there’s an argument that we probably should. Do you think you’re suffering a bit of burn out? Maybe you’re just getting used to the new closed loop set up? Anyway, go easy on yourself was what someone told me on here and they were right. Take it easy
 
I find no value in reading about life expectancy for people with Type 1. The statistics are based on historic data which will be impacted very little the recent advent of diabetes tech like cgms and insulin pumps. In fact, most people in those studies used mixed insulin and tested their BG using urine.
My focus is doing what I can to minimise the risk of complications and think I am doing pretty well. When I was diagnosed 20 years ago, I was told 8 would experience diabetes related complications like neuropathy or retinopathy or kidney problems or ... within 8 to 10 years. My retinal scan are clear, my annual blood tests are all in range, my hba1c is in the low 40s. And I am fitter than most people my age.
I do not see diabetes issues as inevitable.
 
Maybe I am naive, but I am fitter and healthier than most of my friends because I have to think about everything I put in my mouth and keep active to help manage my diabetes. Changing my diet (low carb) to help manage my diabetes has also improved other health issues, so I fully expect I will live longer and be healthier as a result of my diagnosis, rather than worrying that it will shorten or diminish my life. My uncle was diagnosed with Type 1 not long after the 2nd world war and despite none of the modern technology to manage his condition, he was still cycling several miles on his own at 80 and lived to 84, even though he had several admissions to hospital with DKA over his lifetime where he was found unconscious and similarly bad hypos..... As I said, he didn't have the benefit of BG meters for most of his life let alone the CGM and pumps we have today, so I think a lot of the stuff you read about is old data and data from people who do not take care of themselves and/or do not have the benefit of modern technology.

Your health is in your hands. The diabetes is just a condition that you manage. It is up to you to manage it as well as you can, but with the technology you have, there is no reason why it should be life limiting. Yes, it is still tough having to think about it all the time, but I tend to think about it as a long running computer game where I try to keep my time in Range pretty good and when I get near a personal best I focus more closely to see if I can make a new personal best and if I do, then I ease back again and just keep it ticking over until I am in a position to push for another new PB. Treating it like a game instead of a health condition takes a lot of the strain out of it for me, so Libre has been a real game changer in how I approach my diabetes mentally and I see it as a daily challenge rather than a burden. Not saying that I don't get frustrated with it sometimes and have the odd near miss with hypos where I get it wrong, but then I learn from those situations and move on. Hope you can somehow find that better mental path and positivity.
 
Pending said:
im just struggling and wish i could vent and be sad with just anyone that actually understands
Click to expand...

We get it @Pending

You aren’t the first to have felt that way. And you won’t be the last. :(

Diabetes can be a relentless grind, and ‘diabetes distress’ and ‘burnout’ are increasingly recognised as being significant challenges with the ongoing management of such a complex condition.

The more recent life expectancy data is much much more positive as far as I am aware. Newer tech like sensor augmented pumps are making increased Time In Range ever more possible. The last I heard there was little difference any more between probable life expectancy of non-Ds and someone with well managed diabetes. Perhaps 5 years?

Certainly the risks are hugely reduced at the sort of low HbA1c you are mentioninng. It was only recently that the minor improvements between 7.5% (58mmol/mol) and 6.5% (48mmol/mol) led to the guidance being changed for T1s in the UK.

5.6% (38mmol/mol) is well below the generally recommended target, and the risks of long term microvascular damage would be lower again. The challenge at that level would be potential exposure to hypo risk. But a hybrid closed loop can be very effective at reducing that.

Hope you pass through this emotional slump quickly.

You are doing better than your think, and can probably broaden your menu a little to make things easier?
 
Jeez!! I've been T1 since August 1972 and as far as I know, by HbA1c has never, ever been as low as yours, though I never had it tested before 1972 and they didn't tell you things like that, then. I do know it was 13% instead of '5-ish' but whether that was glycosylated haemoglobin (the test before they called it HbA1c) or the equivalent of a fingerprick I'm clueless. Urine tests always a gaudy shade of ochre or sometimes bright orange, '5-ish' would be royal blue, which mine hardly ever was.

Oh and apparently, I'm not dead yet, still got both my kidneys, both legs and feet, can still see and smell and hear .......
 
Am I missing something? I don't see anywhere that the OP has posted their HbA1c.... just that they have read that over 5.6 causes issues..... which is rubbish of course.
 
After 57 years of being a Type 1, I definitely feel I am healthier than many of my contemporaries of 66 years old.
 
Pending said:
hey,

been type 1 for 7 years now no complications. recently been moved onto the artificial pancreas with dexcom and tandem. "new insulin aswell"

recently been reading posts about life expectancy and issues, then also some about a1c being over 5.6 and your basically asking for issues its just put me into a depression.

its got to the point i dont want to eat anymore and when i do with the new insulin im so worried about over counting the carbs and going low that i under count and go abit higher. my ketones are going higher and im losing weight because im just not eating enough carbs.

i keep trying to reassure myself if i do well count well keep things under good control i can avoid issues but i feel like im lying to myself and its inevitable.

im just struggling and wish i could vent and be sad with just anyone that actually understands
Click to expand...

Sounds like your suffering from health anxiety my friend, which can happen when you have a life long condition like diabetes.

Like @trophywench been diagnosed long time & never had anything near as a Hba1c of 5.6 I can tell you, in my early years figure would be in the 8's & in latter years 7s but still here so don't believe everything you read on Web.

Don't have confidence to say I'm fitter & healthy than friends like @helli & @rebrascora but think I'm doing alright by trying to eat healthy & exercise everyday, but another important factor in keeping well with a condition like diabetes is to keep a positive state of mind, mistakes happen we all make them but don't dwell on them if they can't be rectified just move on, that is my philosophy in life & it almost certainly applies to diabetes.
 
7 years without complications has got to be a positive. I know I am type 2 but this comes with its own issues in the future I guess but try to put that out of my mind and think positive, had plenty of practice in positive thinking and it works. I too have looked at articles and reports, even my doctor says I have a (G.I. ? score of 33), whatever that means, and frankly don't want to know. For me the old saying that there is always someone worse off than you are and to count your blessings works if I am ever depressed, terrible saying though I agree. One of my daughters friends; a lovely girl, has a brain cancer which she has has since 13 or so, treatment has reduced and stabilised it and she leads a near normal life. She is however the brightest, friendliest kid you could imagine, full of energy and enthusiasm and excitement for the future. Kind of puts my little problem in the shade really having lived most of my life without medical issues.
 
thank you guys for all the msgs i really appreciate it, i think that when i read posts about life expectancy it just triggered something in my head that was a sudden my god nothing i do even matters if thats the max number i would possibly get to. it just started spiralling and i read more and more stuff that made it really worse.

i still havnt eaten properly 20 max carbs a day just so worried about going high "lost so much weight"

hba1c has only really been high once at 6.7 the rest of the time im lower 5.8 - 6.3 ish. reading that new tech which im lucky to have and newer insulins arnt really reflective of the stuff im reading is a little glimmer of hope.

i really appreciate all the replies thank you guys
 
Last edited:
That’s unsustainable @Pending :( I went through a period of stress about my insulin doses, which affected my eating. It’s not a good place to be, and losing too much weight just makes things harder and makes you feel crap.

The trick is to get some ‘safe’ meals - meals that you do t have to think about. This is easiest for breakfast and lunch. Do not fear carbs! That doesn’t mean you have to eat 90g carbs for every meal, but you can certainly eat a reasonable amount. Restricting carbs too much will actual ‘beep’ up your control, as it messes with your insulin sensitivity.

As for the life expectancy stuff, think about it - think about the plethora of medical,conditions and illnesses out there. Do you worry about all of those? No, I hope you don’t. All we can do is do the best we can. That doesn’t just apply to people with diabetes, it applies to everyone. People without diabetes aren’t immune to heart disease, pneumonia, hypertension, etc etc etc etc.

Don’t let fear steal your life away. It’s no good living 90 years if you spend 60 of them worrying about dying. Live well - and eat well x
 
Status
Not open for further replies.
Back
Top