T1 and finding it tough

[Elena12]

Hi all,

I’m new to this forum and have never really reached out in this way before but for the first time in my diabetes lifetime I am really struggling.

I was diagnosed at the age of 6, I am now 23 and so consider myself to be in quite good practice by now haha! Don’t get me wrong I know every day isn’t the same and there are external factors that can throw you off but throughout my years I have had good control. I accepted from quite early on that this was my life now and I learned to live with it

I have recently however been really struggling to the point where it’s really getting me down. My blood sugars are all over the place and are constantly higher than usual, I am doing nothing different to what I have always done and if anything I am trying so much harder to keep them down. I can’t help but feel fed up even though I know I’m trying my best, and in the back of my mind I’m just thinking about all of the complications that can arise from bad control for a prolonged period of time.

Has anyone had this before? Or even just some words of advice I would appreciate anything at this point 🙂

 

[Leadinglights]

Welcome to forum.
I am not Type 1 but from reading here many people go through exactly the same as you are and this is especially true when other things are probably going on in your life as well.
It is a mistaken perception that everything will stay the same and just as you think you have cracked it something can send things into orbit.
There are lots of experienced people here who hopefully will be along to offer words of wisdom but it would help if they know what insulin regime you are on as there could be something you could do on that front to give you better management.
It is always worth discussing your issues with your diabetic support team as they are also there to help you.

 

[Elena12]

Thank you! Yes I know there’s no magic cure as it were, I think my issue is how I’ve managed for so long for it all of a sudden to be so difficult just to stay on an average level.
I am insulin based and inject with each meal based on my carb intake.

I do however feel lot of the time when going to see nurses/support they just stick to the usual of lumpy sites or needing to carb count better, no one seems to discuss what other things could be going wrong and so I find it quite disheartening

 

[Leadinglights]

Thank you! Yes I know there’s no magic cure as it were, I think my issue is how I’ve managed for so long for it all of a sudden to be so difficult just to stay on an average level.
I am insulin based and inject with each meal based on my carb intake.

I do however feel lot of the time when going to see nurses/support they just stick to the usual of lumpy sites or needing to carb count better, no one seems to discuss what other things could be going wrong and so I find it quite disheartening

I think your post may have got lost in another thread so I will alert a couple of people @rebrascora and @Inka who usually have plenty of good advice.
What insulins do you use as that can make a difference as to what people may suggest. Don't worry about asking questions.

 

[42istheanswer]

Maybe also @everydayupsanddowns could move posts to create a new thread for you? Then more people might see 🙂

(Also not type 1 so no experience to offer myself either, sorry! But I'm sure someone will be along soon)

 

[everydayupsanddowns]

Welcome to the forum @Elena12

I’ve split your post and the replies you’ve had to a ‘Newbies’ introductory thread so you can get a proper welcome, and so that replies to the other thread don’t get muddled with yours 🙂

Your post really resonated with me. Thank you!

There’s quite a bit of faff that we learn to absorb into our daily lives with T1, dose calculation… adjustments for activity, alcohol, illness, even the weather(!). Tweaks to doses based in what’s happening next, or what happened yesterday. Not to mention the more or less continual need to reset and retweak basal, carb ratios and correction factors as insulin needs ebb and flow.

But it takes just as much effort, brain power, guesswork and double-thinking to get terrible results as it does when things are just pottering along nicely. 😡

I wrote a blog post a few years ago about these same frustrations. Carb counting, adjustments and all that are the easy bit. And if levels play fair then that feels fine. What I find really exhausting is the constant need to chase the goalposts as they zoom away over the horizon. It’s exhausting! Especially knowing that almost as soon as you’ve got things rebalanced for a week or so… they will start to drift again

Diabetes days off

Reminiscing about times when it has almost felt like type 1 diabetes was giving me a day (or week) off.

www.everydayupsanddowns.co.uk

Have you thought about an insulin pump? (I was resistant for a long time, but love mine now). There are a new breed which work alongside a glucose sensor to try to take some of the load off you brain. And even just a regular pump might give you increased flexibility and precision - which can make a huge difference.

 

[rebrascora]

Hi and welcome @Elena12

Sorry to hear you are going through a rough patch but really pleased you found the forum here because talking things over with others who face the same challenges and comparing notes can be really helpful. I would be lost without the support, knowledge and practical experience shared by the good people here, so I am very confident that you will find some things to try here to fix it.

Firstly, can you answer a few questions please....

1. Which insulins are you using both long acting and short acting?
The type of insulin can be really relevant as they all have slightly different profiles, particularly the basal (long acting) insulins and sometimes your body can change and therefore a basal that was previously working for you, may no longer be the best choice. The time you take your basal can also be a factor and sometimes just changing when you take it can make a difference.

2. Do you adjust your long acting (basal) doses yourself or rely on your nurse to set them?

3. Have you ever had an intensive education course like DAFNE (Dose Adjustment For Normal Eating) or whatever your local equivalent is? It is about so much more than just carb counting and teaches you to recognize when your basal insulin dose needs adjusting and how to keep safe in a whole range of different everyday life scenarios like drinking alcohol and exercise and illness. I think many people who are diagnosed as children, seem to slip through the net of being referred onto these courses as adults because they have been managing their diabetes for a long time, but there was a lady on my DAFNE course who had been Type 1 for 50 years and it really helped sort her severe hypo problem out. I think perhaps after some time with no other input, you get stuck in a rut with how you approach things and having the input of a course like that or this forum, helps you to realise that things more on or the many different angles you can approach the problem from in order to find a solution.... Kind of like encouraging you to think a bit more outside the box.
Anyway, it was this course which gave me the confidence to adjust my basal insulin doses and that makes a huge difference to my diabetes management.

4. Do you have Freestyle Libre or other CGM? If so, can you post a photo of a typical day's graph which highlights the problems you are experiencing, so we have a better idea of what is going on and can perhaps make some suggestions..
If you don't have Freestyle Libre, ask for it as it can be an absolute game changer and should be offered to all Type 1 diabetics now with no hoops to jump through.

 

[Proud to be erratic]

Hello @Elena12, welcome.

I'm only 30 months into this business and certainly can't add much to what has already been said. Because you are new to the forum and judging by your comments about 'nurses/support and the usual ....' it is possible that some of the recent advances in either tech or just diabetes knowledge has passed you by. My initial DSN, pleasant and helpful enough, was well adrift of what exists today and this only became clear once I moved to a different hospital team. I should be fair and acknowledge that Covid isolation prevented face to face and some of her colleagues were moved to front line wards, so she was also busy!

Libre and the flash CGM was, after 12 months on MDI with finger pricking, a major turning point. Having a low alarm set at 5.6mmol/L gives me (even with my fairly brittle diabetes) sufficient warning time to monitor and respond if necessary - well before any hypo. I still occasionally get into the low 4s, very infrequently get immobilised by a mild hypo and haven't had a full blown deep hypo at all in 2022. Thanks to Libre 2.

Have you come across the 42 factors that can affect BG? I've put a link below. I find knowing about some of the possible reasons for why a day goes wrong, helps me reconcile myself with that and move on. Some of the factors can't necessarily be pre-empted and thus avoided, but in my brain finding an explanation is a help in itself.

42 Factors That Affect Blood Glucose?! A Surprising Update

Adding 20 new factors, a whole new category on behavior and decisions, and research on unexpected things that impact blood sugar and diabetes

diatribe.org

Anyway welcome to here, there is loads of knowledge within the membership and I find the site itself pretty good and certainly user friendly for my limited skills. Good luck.

 

[nonethewiser]

Hi all,

I’m new to this forum and have never really reached out in this way before but for the first time in my diabetes lifetime I am really struggling.

I was diagnosed at the age of 6, I am now 23 and so consider myself to be in quite good practice by now haha! Don’t get me wrong I know every day isn’t the same and there are external factors that can throw you off but throughout my years I have had good control. I accepted from quite early on that this was my life now and I learned to live with it

I have recently however been really struggling to the point where it’s really getting me down. My blood sugars are all over the place and are constantly higher than usual, I am doing nothing different to what I have always done and if anything I am trying so much harder to keep them down. I can’t help but feel fed up even though I know I’m trying my best, and in the back of my mind I’m just thinking about all of the complications that can arise from bad control for a prolonged period of time.

Has anyone had this before? Or even just some words of advice I would appreciate anything at this point 🙂

Been there, as most long term type 1s will have, find its best go back to basics & seek help from hcps if need be.

Tbh looking back lot of my own frustrations where on injections, found since switching to pump 11 years ago those frustrations are few & far between now. Stick in there.

 

[tony1990]

I'm new to it and finding blood sugars a pain in bottom so much to learn just keep your chin up and keep trying that's all I'm doing

 

[Inka]

Welcome @Elena12 🙂 I’m going through a rubbishy patch at the moment too and my sugars are mad. I completely get your frustration and upset. It’s actually quite scary when you lose control after managing well for years.

I’ve recently had some blood tests done to look for other causes like coeliac, thyroid, etc. That would be a sensible thing to do if you haven’t had tests done recently. Has anything changed that might be affecting your sugars eg new meds, new daily routine, stress, poor sleep, etc? Have you had a recent virus that might be having ongoing effects?

I think part of my problem is absorption of the insulin. I don’t have any lumps but I find sites ‘wear out’ or absorb erratically. I’m currently experimenting with various body areas to see if I can improve things eg arms.

Try not to stress about it. Just keep going and try to work out what helps, even if only a tiny bit.

 

[Honey45]

Hi all,

I’m new to this forum and have never really reached out in this way before but for the first time in my diabetes lifetime I am really struggling.

I was diagnosed at the age of 6, I am now 23 and so consider myself to be in quite good practice by now haha! Don’t get me wrong I know every day isn’t the same and there are external factors that can throw you off but throughout my years I have had good control. I accepted from quite early on that this was my life now and I learned to live with it

I have recently however been really struggling to the point where it’s really getting me down. My blood sugars are all over the place and are constantly higher than usual, I am doing nothing different to what I have always done and if anything I am trying so much harder to keep them down. I can’t help but feel fed up even though I know I’m trying my best, and in the back of my mind I’m just thinking about all of the complications that can arise from bad control for a prolonged period of time.

Has anyone had this before? Or even just some words of advice I would appreciate anything at this point 🙂

Totally get you. All I can say is, we’re doing really well. If we’re stressed about it, it means we’re doing a good job and that we care about it and trying to make it better for ourselves. We will thank ourselves in years to come putting all this effort in. Keep going, come here with any questions. This is my first day on here and it’s already made me feel 10x better just reading through and getting some support! I’m 25 and got diagnosed when I was 17 so not as long as you, but I do understand. Being in our 20’s is a busy time in life figuring out what’s what, and diabetes on top it’s always going to be difficult. But, we’re doing great! Is there anyway I can help, in terms of your control? X

 

[soupdragon]

@Elena12 - you've had lots of great suggestions so I just wanted to send lots of good wishes your way. It is so hard when when, despite all that effort, those blood sugar levels aren't where we want them to be.
You've been dealing with this for much longer than I have, and it sounds as though you've done a great job. I hope you can get some support from your diabetes team and that things start improving soon.