I was living in Alice Springs in the Northern Territory, Australia. I was 22, and with hindsight I’d say I had symptoms for a considerably long time before diagnosis.
I often joke about a couple of things to do with my diagnosis, namely that I was diagnosed on April Fool’s Day! The other thing I joke about is the ‘trauma’ event that is often considered the catalyst in the lead up to diagnosis.
I went and saw Grinspoon (great Aussie band) at a local venue. It was the first all ages gig in town. The bouncers in their wisdom, had set up trestle tables on their sides as a barrier to the stage It was utter mayhem. No mosh pit etiquette at all! I was right at the front against a trestle table and there was a young teenage girl beside me. The crowd pushed us from behind. I actually knew the head bouncer, and after I had pulled the teenager in front of me to try to protect her from the crush, I got his attention to pull her out. After she had been pulled out, I got slammed into the table which broke in half!
The next day, I had a line bruise that went from hip bone to hip bone and my lower back and knees were also rather black and blue.
I call that the beginning of my D journey ( no proof whatsoever!!).
Lack of support and general understanding at the time by my HCP’s, has caused me to have many hospital admissions over the last 21 years. Fortunately I haven’t been for 8 years.
All DKA’s are serious, but my most serious was 10 years ago. It was when we learnt how profoundly stress affects me.
I had to be put into a coma, and I went into organ failure. My heart stopped, my lungs collapsed and my kidneys failed. I am extremely happy to say that I fortunately regained full function of my kidneys. I have just ‘celebrated’ what I call, my bucket birthday! The day I ‘kicked the bucket’.
After I came out of the coma, my friend and I had very deep, philosophical conversations and we started a ‘backwards bucket’ list.
After I left hospital and my endo and I realised that it stress was the most likely reason for being so ill, I was forced to medically retire, at the age of 34.
I have just started on a CGM, albeit reluctantly. I’m not sure how I feel about having things attached to me 24/7. I’m going to give it a really good go, because I absolutely understand the benefits of the data, but I’m still hesitant in how it makes me feel.
Welcome, @SBee. Thanks for sharing your story, and am really sorry that it’s been such a rough journey for you, though I don’t know of anyone who has found their journey to be easy. I’m really happy for you regarding the CGM. I think if you’ll be patient with it, you’ll find it worthwhile. I received my first CGM around 2017, through AMSL in Australia. I wouldn’t want to go back and live without it. It’s been that helpful.
Thanks @Carol. I’m hoping I can get past the annoyances. Fortunately, I’m eligible for full funding from the NDSS to obtain the technology. So I’m grateful for that. I’ve only had the CGM for 24 hours, so I’m not making any judgements yet!
Wow, first what a badass to get diagnosed in or around an awesome band and mosh pit experience. That puts you at the front of the class as far as I am concerned. I know there is a phobia/hangup about having something hanging off of you, but we would never want to trade anything for the CGM data, it is that helpful. Sure, we have taken breaks and all, and since we pump there is a little guilty pleasure when you take a fully naked shower when all the replacements line up. But the CGM data is how we learned to control the disease well, then how we monitor that things haven’t changed.
Thanks @Chris! I was probably more young and stupid than badass, but I’ll take it!
The reality was, that I lost 30kg, was in hospital for a week and was diagnosed with an underactive thyroid at the same time. It was also a time when carb counting was just being introduced, and not everyone had internet access. I had to get my mum, who lived 4000km away to search for stuff online, print it out and post it to me! Of course with my eyes adjusting to being on insulin, I couldn’t read anything for a month anyway!
Living in the centre of the country was amazing, but it was predominantly type 2 and renal patients there, and we only had a visiting endo once a year. It was nice when I moved to where I am now, to get proper support and HCP’s that knew what they were talking about!
Ditto the previous responses! Really glad that you are able to get better care now, and you are on a CGM. I totally agree with you about stress. It is tough to diagnose so it isn’t obvious it is the culprit causing the BGs to go haywire I’m glad you were able to identify it as being the problem! I, too, try my best to limit the effect of stress in my life!
I’m Shauna. I was dx in 1999.
It was utter mayhem. No mosh pit etiquette at all! I was right at the front against a trestle table and there was a young teenage girl beside me. The crowd pushed us from behind. I actually knew the head bouncer, and after I had pulled the teenager in front of me to try to protect her from the crush, I got his attention to pull her out. After she had been pulled out, I got slammed into the table which broke in half!
I’m glad you were able to identify it as being the problem! I, too, try my best to limit the effect of stress in my life!