Needing some advice

[briony1]

Hey everyone - I’m going through a really ****** time with my diabetes at the minute and feel really sad, alone and scared. I feel like I have no one to ever speak to or get advice from and even though I’ve had diabetes for 5 years nearly and my doc always tells me I manage well - I’ve pretty much been winging it for the whole time and feel like I’ve been guessing the whole thing!! Would really just like to find out some stuff and get to know other peoples stories - I’ll do a little one about me!!

So my names briony, I’m a 27 year old executive assistant and work in London! I was diagnosed with type 1 diabetes in Nov 2014 after my first pregnancy and take apidra and Lantus. My hba1c on diagnosis was 10.4 and now it’s around 7. It’s never been above 8 since diagnosis and mainly below 7. Touch wood, I don’t have many other health problems, just a fast heart rate and absolutely terrible anxiety which I’ve suffered from since I was small! I have two beautiful kids and try not to let my diabetes get in the way of life but some days it really does hit me!

Thanks and looking forward to hearing some of yours! It would be good to hear about how you’ve controlled your diabetes and how long you’ve suffered, if you struggle with anything in particular and any advice you can give me - thank you!!

 

[Juicyj]

Heya @briony1

No wonder your having a rough time, your managing your health, work, motherhood and sanity, there a lot going on for you there. I have to admit I've had my struggles too with being a mum, working and keeping my t1 in check, when I've really struggled I've gone straight to my DSN and had a chat, fortunately she's been amazing and a really good ear, very often it's just taken having a chat to her or off loading here which has helped to get me back on track.

I have to admit your doing incredibly well so give yourself a lot more credit there, keeping your HbA1c stable is good, don't fret about the small stuff, if you feel like you need a friendly chat drop me a PM, happy to lend an ear x

 

[Fairygodmother]

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!

 

[Fairygodmother]

Gap? Duh! GP.

 

[LooperCat]

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.

 

[Fairygodmother]

Yes, come and join us at T1StarsRUs and reconnect with the dafter, outward looking, supportive, kind and caring, all embracing everyday life of T1 folk.

 

[MeiChanski]

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.

 

[briony1]

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.

Hi Mei! Great to hear your story and thank you so much for your kind words. I really do appreciate it and of course feel free to ask advice on absolutely anything! Sounds like you’ve had a tough time yourself - much tougher than I have with diabetes and for much longer so kudos to you and you must be strong yourself to get through all of that like you have! That’s the exact reason I wrote this post - as it’s made me feel already like I’m not alone and there are lots of lovely people out there like you who do understand what I’m going through

 

[briony1]

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 Mel! Thanks for your reply - you’re completely right and it definitely is overwhelming sometimes (for me now is one of those times!!).

For BG monitoring I’m just pricking at the moment currently waiting patiently for my libre which I know in itself will massively help with my spikes etc so fingers crossed that in tern as a good impact on my mental state when dealing with T1!!!

Glad to hear you’ve got all the gadgets!! I am probably one of the people you describe who would rather not have anything attached but I completely admire people who have the patience and commitment to use these tools to help them - that’s part of my problem, I feel like I’m too busy to learn all of that! But my injections and pricking is working for me (most of the time) at the moment so if it’s not broken don’t fix it is my motto. Am trying to be open minded about the libre but don’t think I’ll have a pump anytime soon!

Thanks again for reaching out - has definitely made me feel better realising I’m definitely not alone!! X

 

[briony1]

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!

 

[porl69]

Hi @briony1 looks like you are doing pretty good with your type 1. Yep it can be a struggle just dealing with T1d never mind children and anxiety! I toff my hat to you
I was diagnosed at 5 1/2 years old 48 years ago. Recently been put onto a pump and it is the best thing for my diabetes, HBA1C has gone right down, check my signature! Also using the Libre, which I and a few others here have purchased the Miaomiao to turn it into a CGM....I have alarms on my phone and watch for when I go low or high. Technology is amazing for us diabetics now

 

[Fairygodmother]

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.

 

[briony1]

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.

Wow that’s amazing and very reassuring to me! I really hope that I get to your age with zero complications even if the road is bumpy! That’s what scares me sometimes, the thought of not knowing what diabetes is doing to my body and what my fate will be! I know I shouldn’t think like that but it’s so hard when I try so hard to get it right and it doesn’t always happen! Are your levels stable and good now? Sorry for all the questions!! X

 

[annliggins]

Hi Bryony1, youre doing great by the sounds of things ...all that plate juggling i couldnt cope now ( im retired so i just stress at mealtimes with timings and also whether ive enough on board to go shopping for handbags )! Seriously .....it took me years of winging it to actually think i needed to understand properly what i was doing ...everyone was going on about background and timing i kept at it and ping! Its slipped into place ...keep at it you will get to the place where you can get on with your life and your bgl will stay stable for a good few hours (bearing in mind variables ) ! Dont despair just get a real understanding of the beast and youll be fine Honestly it is tough at times but not every day and its not impossible to live happily infact its relativley easy once you find your recipe x You go girl and talk to the experts on here . Always they are happy to help x