Hello! My name is Mei, a year younger than you. I was diagnosed in 2001 at the age of 8, at a time where insulin choices were quite limited. Apparently it was common back then to be prescribed mixed insulins that you do two injections a day. So I had a very rough 4-5 years since my diagnosis, lots of DKA and missing out on school. Then in 2006/7 they introduced me to the bolus/basal regime. Things did improve and I did learn the very basics of carb counting but not in depth. Few years on between 2010-2012 I was facing alot of hypos, I starting to miss school a lot, this was when I was doing alevels and btec. My school didn’t understand and compared me to another younger student in which she said “he is doing much better than you”. Little did she know mental health and erratic control had an affect on my wellbeing. So I dropped out of my alevels because I felt rubbish. However during that same summer I was accepted into college to do another alevel and I enjoyed law. However I was still facing hypos, so I just managed to submit all the work in then I was accepted into university.
I’m still facing my struggles but I did dafne in 2018 and it has helped me to understand diabetes in depth. Now since I moved, my consultant has kindly prescribe the libre sensor and different insulins - fiasp and tresiba which both have helped me. I feel it has improved more.
I wanted to say I admire your strength and you have a beautiful family. Diabetes is annoying and frustrating but you are a strong person. I know I’m speaking for myself but I wished I had that strength to juggle everything. I don’t have children but I hope one day I will and ask you for advice. You are not alone, you’ve reached out to us and I hope you will speak with your team for further help to make your management more bearable.
Morning @briony1 - it can get a bit overwhelming at times, can’t it? Looks like we were diagnosed at a similar age, I was 23. I lost years to feeling terrible due to T1 and missed out on a lot of stuff. It’s especially hard when you’re taking care of little ones as well as working, but you do need to take care of you as well. You can’t give if your own cup is empty.
I see you’re on injections, what are you doing for BG monitoring? Just fingerpricks or do you have a sensor as well? The new tech available can make a real difference to the amount of work we have to do to be our own pancreas, and you need to do a DAFNE carb counting course to access it. As FG says, you should be able to get time off work to do one, as we’re covered under the Equalities Act 2010.
In the last couple of years I’ve gone full cyborg - first a Libre glucose sensor, then an aftermarket Bluetooth transmitter so that I could add alarms and get the data on my watch, then a tubeless pump. My most recent upgrade is to (unofficially!) connect all that together to form a DIY artificial pancreas system - I’m still fiddling with that but when it’s running smoothly it takes a lot of the relentlessness away. There’s many ways to manage T1 - some prefer not to have anything attached to their body, and stick with injections and fingerpricks, some of us like all the toys - and everything in between!
Anyway, we’re all happy to help and support you - check out the Type 1 Stars thread for a chat about (currently) puppies, cats, squirrels and occasionally diabetes.
Hi @briony1, yup, you’re doing well on the T1 front. Work, children, anxiety, life . . . . It’s enough to overfill anyone’s days, let alone days for we T1 lovelies. I think just about everyone goes through times when they want to flush T1 away with the bathwater!
I used to really hate the time lost to dealing with hypos, hypers and their aftereffects, and can well remember the awful feeling that my poor children were having to carry the load of a mother who wasn’t quite like their friends’ non T1 parents. I can also remember the feeling that I couldn’t always be as even tempered as I wanted when the effects of blood sugar changes took hold.
My two children are now 39 and 40 and they say they mainly remember the parts of their childhood that were nothing to do with my T1: the fun parts.
Do you have a libre? There are people who have used tech to pimp the libre so that it gives warnings of impending lows and highs. I’m tagging @Mel dCP, @porl69, and @Scott-C too, who seems to have the knack of managing T1 so he can live to the full.
Personally, having lived with T1 for nearly 50 years now I’ve almost got used to knowing that no two days are the same and that for every day when the demon gets into the bloods there will be a lot of times when it’s great to be alive and enjoying the sun, the grandchildren, leaves on the trees, friends . . .
For now, looking back on the time when our children were young, my advice is not to put too high a value on keeping the home tidy, play games with them, make things with them, go to the park and be silly, and always keep the glucotabs/jelly babies where little hands can’t get them before you do.
Oh, and have you done a Dafne course? It’s not a perfect answer to finding the best way to match doses and food but it’s a good beginning. You should be allowed time off work for it. Also, have you talked to your Gap, your Consultant and your DSN about the way you’re feeling? There’s a big concentration on mental health and T1 right now so opening up with them about the impact it’s having on you ought to get some responses.
Good luck! And hugs!
Hey fairygodmother! Thanks for your reply and thanks so much for your kind words. I probably don’t give myself enough credit, you are right! I’m spinning a lot of plates and most of the time I do it well (other than currently now when I’m having a breakdown re diabetes)
Well done to you too, you’ve had a bloomin’ long stint of diabetes and sounds like you’ve done amazingly too! How has your control been generally over the whole time? Do you suffer with any complications?
I think it’s definitely time for DAFNE I have been putting it off but probably best to go for it now!
Hi Briony, yes, it’s been five sevenths of my life, and no, it hasn’t all been plain sailing, especially in the early days! I’ve had some spectacular hypos in the past. That family used to joke that I always timed them for the early hours of the morning or when we were visiting a glorious but crowded beauty spot or monument.
No complications to date. Like you I was in my 20s when diagnosed (20 to be precise).
I find the developments in T1 treatment over the past just about 50 years have made an enormous difference both in the range of insulins available and the tech. I suspect that I was brilliantly swooping between high and low for the first few years, but the only test was with five drops of probably 3-4 hours past its immediacy urine and a fizzing tablet that changed its colour according to sugar content. Despite this the docs at the clinics behaved as if it were our fault if blood sugars weren’t perfect. I’m very glad it’s no longer like that!
Yes, give Dafne a go if you can. You’d meet some more T1s too.
And you’re ‘allowed’ a T1 breakdown! Don’t beat yourself up about it.
More hugs.
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