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explaining what it's really like to live with Type 1

@clanders, I'm understanding how you feel, as 52 yrs as T1. You have had it tough. I also lost my hypo warnings, but was advised to run higher bloods for a while (10+) and I got my warnings back. I'd been running too low for too long, doc said, and you may be too, if you're having bad hypos, so maybe worth a try? As for the rest of it, we just have to keep walking this tightrope. Keep going, you're doing ok. xx
 
Thanks Deb. I ran them higher than usual for a month (have brittle diabolics so there were times, despite my efforts, when the BS dropped or went really high. There was no difference. I have absolutely no hypo awareness at all. I haven't since using human insulin. It is good to hear that it worked for you
 
Thank you
 
Thank you. I have hope and light in my two living children. I know how hard I worked as their mum to stop them from developing diabetes, So far so good. I am glad that you have found a way through. I am just exhausted by the whole thing.
 
Fairygodmother said:
Thank you!
Click to expand...
Thanks Snapsy. I'm not sure I used rational in anything I wrote but what the heck! Currently nursing a broken jaw after my last hypo on saturday when I fell breaking the coffee table! (You should see the coffee table!) I lost the ability to be rational when my driving licence was revoked because I am brittle with no hypo awareness even though I have no history of hypo induced accidents!!!! I am not feeling warm and fuzzy towards DVLA at present!
 
Awwwww @clanders , what an awful side-effect of a hypo - broken jaw and broken coffee table! That's just horrid - am sending massive hugs your way! And I'm also sending sympathy re the DVLA situation. I had my licence revoked some years ago due to hospitalisation after a psychotic episode - I reapplied when I was better, and was granted a one-year licence to start with. All back to 'normal' now in that I have a three-year licence like most of us.

It was @Fairygodmother who'd mentioned the word 'rational' , in regard to friends and family always assuming that some of us can always be rational...... when in fact 'symptomatic irrationality' can be a recurring feature in some of us type 1s (I count myself in that number, big time!).

Look after that jaw now, won't you? xxx

Love Snapsy
 
Hi. Here to share my experience so far.
I was diagnosed at age 8, and am now 29yrs old. Parents worried that I had it when they noticed that I was quickly losing weight (I was chubby as a child), and had fruity breath.
Since then, have gone through several kinds of insulin.
Have experienced 3 almost-blackouts but thankfully my mom was there to "force-wake" me and have me drink something sweet.
Being a diabetic is... depressing. And more so because when people watch you, or when you tell them you are a diabetic, the first and only thing that comes to their minds is that I can't have sugar, period.
They do not realize that everything changes after the diagnosis. Your food, your lifestyle, routines ruling each day, injections everyday (4x a day), glucose metering everyday (mine's actually every meal time, +1/2 if needed), scratching your head at sudden influxes and being frustrated over the feeling that you realize that you don't have control over everything, but why do I not have control even over my own body?"
And adding to all that, the medication, strips, the meter, the checkups, etc... all add up and are - pardon my french - expensive as f*ck. Here in the Philippines, diabetes is considered a rich man's disease. I don't know if it's also considered that way in other countries.
And then, it is also scary to think that having diabetes brings with a much higher risk of complications.
I read before - although I think this is not as true anymore in the present day, or maybe is not true at all - that once you're diagnosed, your life expectancy expected to be 27 years less. I have made 27 my favorite number.
Again (as I mentioned in my introduction at another forum), having diabetes is like being given a life sentence.
 
Have never known anything else, having got T1 when I was 2, 56 years ago. So I cant compare. Yesterday's visit to the dietician was one of the worst moments when she told me I needed to drastically reduce coffee drinking to reduce a rising potassium level. Coffee! The pump I am used to, insulin has been trickling in for 56 years from many outside sources - starting with a heavy syringe standing in surgical spirit in the 1960s and now my much more effective pump, with some libre back-up. The various battles with long term impacts such as neuropathy and retinopathy and a little toe coming off are just part of life's rich tapestry but coffee! But seriously, am looking forward to hitting 60 years with T1 and beyond and good luck to you. For anyone newly diagnosed I would say this thing neednt stop you doing anything. Our local MP has been T1 since she was 3 and you wouldnt know it and then of course there is the prime minister. Ever onwards and ever upwards
 
Why do people keep saying it's OK then describing how they've had bits chopped off?

I don't want my toes cut off.
 
Time for a poll - who still has toes? Sorry bad joke I know...
 
".... having diabetes is like having a life sentence ..."

Yes well everyone has a life sentence.

On being diagnosed the impression I had was being marooned on an ocean sandbank, surrounded by deep water and just seeing everyone else on the the beach.

Then with a bit more knowledge and management, my impression changed to being on a ship. Ok, I would not dock in a port but I was on a journey.

Then, later, with more knowledge and insight than every health care provider who ever billed me and seeing so many inspiring stories and interesting perspectives from people on fora like this one, and with resolve that was lacking when I just followed advice, now my metaphor is that I am captain of that cruise ship. I am setting the course, the cafeteria menu and the entertainment program and the sports on offer.
Others can come along but it's my cruisey journey.

(Edit: changed "illed" to "billed"!)
 
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I meant like, as per your metaphor, it's like being given the ship, and not having the choice to leave the ship even if you miss being a landlubber.

But I like your thinking. A positive outlook always helps, and enables the mind to open enough to see new possibilities and openings for improvement. I need to practice that kind of thinking too.
 
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