New here

[Glerma1]

I’ve been a type 1 for 25 years and on a pump almost as long. Have been suffering from diabetic burnout recently and looking for support from others who understand and can relate. I have found that consistent exercise and minimizing carb intake is what helps the most, unfortunately the denying myself certain foods is very wearing and at times really difficult.
Then going high from not eating but exercising. And not consistently high that I can bolus ahead with any accuracy.
I’m on tandem t-slim with G7 loop system currently which was a vast improvement for me from my previous Medtronic.
Also being told by my Endo that sometimes they just don’t know why things are happening is also discouraging.
My son was recently diagnosed as a type 1 around same age as I was and started on pump within a few months. Seeing him adjust to this new norm has also been difficult. I’m looking forward to having a community to get insight from.
Thanks for listening

 

[Anna DUK]

Hi @Glerma1, welcome to the forum. I'm pleased you have joined to gain insight and support from the community, and I hope you will find the answers you might be looking for.

In terms of diabetes burnout, you might find it helpful to also speak to our Helpline for extra support: https://www.diabetes.org.uk/support-for-you/helpline and we also have this webpage for your information: https://www.diabetes.org.uk/living-with-diabetes/emotional-wellbeing/diabetes-burnout

With your son newly diagnosed, understandably there's a lot going on for you as a parent too. How old is your son? How is he managing?

 

[mashedupmatt]

Hi @Glerma1 and welcome to the forum - I think most of us would have (or will) experience Diabetes distress or burnout at some stage - If I'm feeling particularly fed up with it all, I try and make some time to do something for myself - a walk, or reading a book, to try and get away from it all - it doesn't have to be for long, but give yourself some "me" time - and I would also consider calling helpline who can also help - glad to hear you are getting better with the change of pump/HCL and I hope your is ok too - glad you have found us

 

[Glerma1]

Hi @Glerma1, welcome to the forum. I'm pleased you have joined to gain insight and support from the community, and I hope you will find the answers you might be looking for.

In terms of diabetes burnout, you might find it helpful to also speak to our Helpline for extra support: https://www.diabetes.org.uk/support-for-you/helpline and we also have this webpage for your information: https://www.diabetes.org.uk/living-with-diabetes/emotional-wellbeing/diabetes-burnout

With your son newly diagnosed too understandably there's a lot going on for you as a parent too. How old is your son? How is he managing?

Thanks I will look into those resources. My son is 25 and as he has only known me as a diabetic he has used me as his resource (which I am happy to do). I have gone with him to his appointments initially until he was comfortable with his new providers and felt he was in knowledgeable hands for his ongoing care.
He is doing really well. My concerns have been regarding him living alone and becoming hypoglycemic. I stayed with him when he first started insulin as his insulin sensitivity was unknown and his primary only knew what “the book” said a type 1 should be started on until he could get in to see an actual endo. But he’s seeing correct dr now so doing well. Pump alerting him when trending low and he treats then which is working.
I’m in the US so I will be using those numbers for reference
I hate knowing what he may have ahead of him. Despite keeping my A1C at 7 or below for most of my 25 years I hv complications with my eyes and kidney’s and just recently was told that that’s normal for being a type 1 for so long. I had thought that keeping my A1C in the range I was told was to prevent these complications. So apparently I need to be closer to normal which I’m told gives me too many lows. I hope the fix comes sooner rather than later for him

 

[Glerma1]

Hi @Glerma1 and welcome to the forum - I think most of us would have (or will) experience Diabetes distress or burnout at some stage - If I'm feeling particularly fed up with it all, I try and make some time to do something for myself - a walk, or reading a book, to try and get away from it all - it doesn't have to be for long, but give yourself some "me" time - and I would also consider calling helpline who can also help - glad to hear you are getting better with the change of pump/HCL and I hope your is ok too - glad you have found us

Thanks I try. It’s particularly bad when I start riding the rollercoaster of highs and lows.

 

[Inka]

Welcome @Glerma1 🙂 I’ve suffered from diabetes burnout and it’s a horrible thing. I found two things helped a bit - relaxing my targets slightly, and keeping things simple re meals. What didn’t help is trying not to eat carbs or, worse, not to eat. That just makes things harder and it all becomes a vicious circle.

 

[Anna DUK]

Thanks I will look into those resources. My son is 25 and as he has only known me as a diabetic he has used me as his resource (which I am happy to do). I have gone with him to his appointments initially until he was comfortable with his new providers and felt he was in knowledgeable hands for his ongoing care.
He is doing really well. My concerns have been regarding him living alone and becoming hypoglycemic. I stayed with him when he first started insulin as his insulin sensitivity was unknown and his primary only knew what “the book” said a type 1 should be started on until he could get in to see an actual endo. But he’s seeing correct dr now so doing well. Pump alerting him when trending low and he treats then which is working.
I’m in the US so I will be using those numbers for reference
I hate knowing what he may have ahead of him. Despite keeping my A1C at 7 or below for most of my 25 years I hv complications with my eyes and kidney’s and just recently was told that that’s normal for being a type 1 for so long. I had thought that keeping my A1C in the range I was told was to prevent these complications. So apparently I need to be closer to normal which I’m told gives me too many lows. I hope the fix comes sooner rather than later for him

It sounds like your son is getting on well which is good to hear, and with him using you as his resource shows that you're a good example to him. Naturally, this may add that additional pressure of trying to get it all right when this is near impossible. You'll be all too familiar in knowing the harsher realities of living with diabetes, just like you've starting mentioning with regards to the complications you have developed. I wouldn't have described living with type 1 and developing complications as a normal progression. Not all people who have lived with type 1 diabetes for 25 years (like you) will go on to develop complications, especially when you have kept your HbA1c 7% or below. Everyone is different in that respect. What kind of complications have you developed with your eyes and kidneys? Are you under regular reviews?

 

[Glerma1]

It sounds like your son is getting on well which is good to hear, and with him using you as his resource shows that you're a good example to him. Naturally, this may add that additional pressure of trying to get it all right when this is near impossible. You'll be all too familiar in knowing the harsher realities of living with diabetes, just like you've starting mentioning with regards to the complications you have developed. I wouldn't have described living with type 1 and developing complications as a normal progression. Not all people who have lived with type 1 diabetes for 25 years (like you) will go on to develop complications, especially when you have kept your HbA1c 7% or below. Everyone is different in that respect. What kind of complications have you developed with your eyes and kidneys? Are you under regular reviews?

Diabetic retinopathy causing macular edema
Have been getting eye injections for 7 years
My eye dr says I’m a low 1 on Diabetic retinopathy scale which is excellent and hv been from the beginning and despite my low A1C he says I’m unlucky with having such issues with macular edema being so difficult to treat as this normally isn’t the case.

I’m stage 3 CKD which has remained stable over past year

Also it has been tempting to not eat as that is one variable to be removed but know that isn’t realistic or possible which is where my burnout has come in to play

 

[Anna DUK]

That's a lot that you've had to cope with over the years so it's understandable you'll be experiencing many emotions and feeling burnt out by it all. You're not alone, many people are here to support you.

 

[everydayupsanddowns]

Welcome to the forum @Glerma1

Sorry to hear about your burnout. It’s an absolute swine of a thing. And it puts into focus just how relentless dealing with T1 can be. Sorry to hear about your DMO too, and your kidneys. We had a member in the past who developed DMO very early after her T1 diagnosis. Complications can be so unfair, and don’t always follow the ‘risk rules’ - which can be doubly deflating if you are working hard to manage your diabetes as best you can.