Frustrated.

[Steveoutdoors]

I am angry and frustrated that I can't get my T1 diabetes under control and feel like crying sometimes. I've had this for over 12 years and tried various insulin even a GI diet but to no avail and now am missing insulin and meals.
I rang the diabetes nurse today and told her I am heading for a burnout, she said to have all my readings available this afternoon and she will ring me back. However, she never rang me back.
This has not helped me in any way I guess they don't care and my diabetes is now in the back of my mind and keeping me awake at night. It's an on going battle which I am looking fast.

 

[ickihun]

Hopefully some type1s will be along shortly to give you some support.
I'm type2 on insulin so I know a little of how you feel. Especially since I've had great bgs on huge amounts of mixed humulin m3 but I started yesterday on a new regime.It has thrown my good bg out the window. Hopefully just for a few weeks.
I've been advised to make small changes very slowly. I don't do much slowly, if frustrates the life out of me. Although on this occasion. I'm going to do as I'm told. Poor dn new to my basal type too. We are learning together!

 

[catapillar]

I am angry and frustrated that I can't get my T1 diabetes under control and feel like crying sometimes. I've had this for over 12 years and tried various insulin even a GI diet but to no avail and now am missing insulin and meals.
I rang the diabetes nurse today and told her I am heading for a burnout, she said to have all my readings available this afternoon and she will ring me back. However, she never rang me back.
This has not helped me in any way I guess they don't care and my diabetes is now in the back of my mind and keeping me awake at night. It's an on going battle which I am looking fast.

What does having your diabetes under control look like to you? What does your diabetic control actually look like now? Have you identified the problem areas that make you think it's not under control?

Different insulin and different diets won't magically achieve control if you don't know how to use the insulin. Have you done a DAFNE course? Have you read the book think like a pancreas - that covers the basics on what you need to know to manage type 1.

 

[Juicyj]

Hi @Steveoutdoors Welcome to the forum

When your feeling like this every small thing can feel amplified so it helps to focus on each day and take some small steps to put things right. @catapillar has given some very sound advice, so go back to basics, when you go off track it will require some effort to get back on it again. Have you done any basal testing ever to see if your background is at the correct level ? Starting here is a good point to check as otherwise you will be out of synch unless this is set at the correct level: https://mysugr.com/basal-rate-testing/

Personally I try not to rely on my DN as they are incredibly busy so try and take ownership where I can to manage it myself, do remember that you wil get through this but developing your knowledge and ownership will help you manage better, best wishes J

 

[Steveoutdoors]

What does having your diabetes under control look like to you? What does your diabetic control actually look like now? Have you identified the problem areas that make you think it's not under control?

Different insulin and different diets won't magically achieve control if you don't know how to use the insulin. Have you done a DAFNE course? Have you read the book think like a pancreas - that covers the basics on what you need to know to manage type 1.

Hi catapiller I've never been on the DAFNE course, however, my consultant said to me "I see you know the DAFNE course quite well then." I looked at him confused and said I've never been on the course. I moved to Wales in September and feel like I am starting out all again here, which doesn't make it easy. My diagnosis is brittle diabetes which can effect you psychologically I think. Thank you for you all for your replies

 

[MelissaC]

Hi @Steveoutdoors

If you are struggling to get control (I know how hard it is, my readings aren't perfect but I'm trying) I would advise going on a carbohydrate counting course. I went on a course a couple years ago and it really does help. That might be a good place to start for you

Melissa

 

[Juicyj]

Hi @Steveoutdoors A good site to help build your knowledge is BERTIE: https://www.bertieonline.org.uk/

As I said earlier look at doing some basal testing as this will help check your background - this is the foundation for good control so a perfect start point

 

[Sibyl]

Hi catapiller I've never been on the DAFNE course, however, my consultant said to me "I see you know the DAFNE course quite well then." I looked at him confused and said I've never been on the course. I moved to Wales in September and feel like I am starting out all again here, which doesn't make it easy. My diagnosis is brittle diabetes which can effect you psychologically I think. Thank you for you all for your replies

Hi Steve,
Well I guess if you've had the brittle diagnosis then you know it's not as straightforward as the regular T1. You may have other underlying conditions causing you extra problems. Have you been checked for gut probs? They may be able to give you enzymes to improve digestion. Does your diabetes team have a psychologist? Find out. In the meantime just take one day or even one meal at a time. Stay calm, we all know the viscous circle of stress and insulin. I'm sorry you have this extra burden. It's frustrating enough for the rest of us! Big hugs

 

[B583]

Having had T1 for over 20yrs, I've struggled too with controlling my BGs, however I don;t let it take over my life. Having achieved a lot in the time I've had, I get over the high's & lows of my BGs & life events no matter what I'm like .

I've found the foods I consume play a lot on what my BGs are like, being active & working too, I have a lot of lows, though reducing my Basal Insulin to the lowest I've had it just the other day, I know I'll benefit from it, as long as I keep up with the lifestyle change I've adopted recently!!

What I'm trying to say is live with it, as it's going to be in you forever, but treat it with respect & control to the best of your ability, whether on your own, advice from friends or family or whether the doc suggests anything. Only you know yourself better than anyone & we're all different. Learn of the foods that affect you either way & all your lifestyle habits. Take each day as it comes & learn of how it effects you & in what way.
All the best.

 

[beckysalvage]

Hi @Steveoutdoors,

I know exactly how you feel - and sadly I think we will always have days like this. I have been Type 1 for 25 years and I have days when I absolutely hate it. I moved to another country last year, and since then my blood sugars have been all over the place and I cannot figure it out. When I come home to visit they go back to usual range so I think it is something to do with climate as I eat/exercise no differently here. I 100% recommend the DAFNE course, talk to your nurse or GP about it. Not only was it a great learning experience for me, but I spent a week with people from my area with diabetes and actually got to talk about day to day experiences. In this regard, look for a local support group - mine was fantastic with local meetings and just other people going through similar things! I'm sorry things are so tough, I just try to take each day as it comes, adjusting my insulin as I go.
Becky

 

[kitsunerin]

Omg this could be me... except I moved from Wales to England, not the other way around! I've had diabetes for 15 years and constantly feel burned out, I'm only just starting to get it under control.

As the others said, take one day at a time, we all have good and bad days, don't try to change too suddenly. Diabetes affects each of us slightly differently too. If you can, keep a detailed record of what you eat and how it affects your BG, think of it as creating a personalized instruction manual for your diabetes.

Good luck to you and I hope you receive the support you deserve!