9 years of failing

Lilireth · Jun 7, 2017

Hello,

I'm new to this site. I just joined because I'm tired of being such a failure with my Type 1 diabetes. I was diagnosed when I was 11, and I've had ups and downs with it. It causes me a lot of stress and anxiety, and I often shut down and get depressed because I can't seem to find that magic mindset. My biggest problem is checking my sugar.. I know that I should, but I'm always afraid of the number I'll see. So I don't test, which basically guarantees a high result anyway. It's to the point where I've been in the hospital for DKA twice since I was diagnosed. I was good for a while so that I could get a pump, but once I got it I stopped checking again. The pump is the only thing keeping me alive right now. My last A1C was about 4 months ago and it was around 11%.

I'm just sick of always failing at controlling my diabetes. I'm depressed and I'm overwhelmed and I could really just use some advice. Thanks in advance to anyone willing to offer some advice!

covknit · Jun 7, 2017

Lilireth said:
Hello,

I'm new to this site. I just joined because I'm tired of being such a failure with my Type 1 diabetes. I was diagnosed when I was 11, and I've had ups and downs with it. It causes me a lot of stress and anxiety, and I often shut down and get depressed because I can't seem to find that magic mindset. My biggest problem is checking my sugar.. I know that I should, but I'm always afraid of the number I'll see. So I don't test, which basically guarantees a high result anyway. It's to the point where I've been in the hospital for DKA twice since I was diagnosed. I was good for a while so that I could get a pump, but once I got it I stopped checking again. The pump is the only thing keeping me alive right now. My last A1C was about 4 months ago and it was around 11%.

I'm just sick of always failing at controlling my diabetes. I'm depressed and I'm overwhelmed and I could really just use some advice. Thanks in advance to anyone willing to offer some advice!

You are not a failure. You have succeeded in getting this far and if you know your destination/target and want it enough you will succeed. Wish I could help but I am a learner myself and type 2. I really thought type 1 has to test in order to be in control otherwise you are letting fate and laziness determine your fate. We all understand the feeling of tiredness about the routine you sound as if you are feeling right now but anyone who manages their condition and you must be is a star. Think positive. Someone like @catapillar who understands type 1 will be along to direct you to the right people as soon as can be.

catapillar · Jun 7, 2017

Hi @Lilireth sorry to hear you are struggling and feeling so low.

Having type 1 diabetes is really tough. It's hard to hear that you think of yourself as "failing" or that you're afraid of the number you will see when checking. I think you're right, you do need a different mindset (I appreciate that's easy to say and not so easy to do). Try to stop thinking of the numbers as good or bad or success or failure. They as just numbers, nothing more, simply numerical figure with no power and no judgement. All the numbers do is give you the information you need to be able to manage your diabetes. They help you make the decisions you need to control them.

You must know you need to test. Try and set yourself small goals to increase your blood tests: like this week I'll test once a day, or I'll test in the morning and before, and you can slowly increase to before every meal, and then after as well.

Try and clear you head before you test. Take a deep breath. Ban words good and bad and success and failure. They are just cold hard numbers.

Remember, the numbers don't have any power. You're the one with the power. You're the one who can make decisions to control the numbers. But in order to be able to do that, you need to actually know what the numbers are.

Deleted Account · Jun 7, 2017

Have you thought of getting a CGM?
It does not completely replace your fingerpricks but you will have a some numbers regardless of whether you test or not. I understand this will be scary. At least your pump will be able to help you correct if the numbers are not as good as you like.
Also, a new piece of kit may help you refocus again .... like you did when you first had the pump.

The downside of a CGM is the cost. There are a few options such as asking your healthcare team if they could help or trialling a Libre (they were offering free trials last year which is worthwhile checking out) to see if it helps.

Diabetes is a pain. I think of it like a sneaky young child who, when all is quiet, you wonder what they mischief they are planning next. But, just like an annoying child, you can train it. And just like a child, even when they are well behaved most of the time, they will mess up just to test you sometimes. It doesn't mean you are a failure: just that life is not easy and fun all the time.

azure · Jun 7, 2017

Welcome @Lilireth

You're not a failure, you're a strong person because you've lived with Type 1 all those years. It can be very wearing - as we all know.

My tip is to change how you see the blood test result. See it as solely a piece of information that will help you beat down the diabetes, not as a judgement on yourself. Knowledge is power. Know your blood sugar and you have the information you need to get one over on the Type 1.

Start by tssting a set number of times a day at set intervals - maybe first thing and before meals. If you see a high number, don't think "I'm a failure", think "Ah! That's a useful bit of info. I'll use that to land a blow on the diabetes!"

If your blood sugar is high, it's high. Not testing won't make it low. It will still be high - except you won't know about it and so won't be able to improve things.

Testing is a great tool in our fight

novorapidboi26 · Jun 7, 2017

What level of control did you have to achieve to get the pump if you don't mind me asking?

paulliljeros · Jun 7, 2017

I was in a very similar situation as you are with not testing. I had terrible control, and knowing I needed to test, but I just couldn't get round to it. There was always a reason not to, or I simply forgot, having already started eating before I remembered, and then deciding, I may as well wait until the next meal. Firstly, even if you have bad results, I promise it's well worth it, because once you start improving your control, the rewards are immense. Have you read "Think Like a Pancreas" and/or "Sugar Surfing"? And if you can possibly afford it, invest in CGM or Flash GM, as this was the turning point for me.

Phillippa · Jun 7, 2017

I understand exactly how you feel because I'm the same. Diagnosed at 3 and almost 30years later I'm a disaster. I want to be better at the testing and eating better but I rarely do. Don't know if I moved into a denial type mode etc but so hard to get the motivation to change. When I was small my mother didn't test my sugars much and I continued on I suppose. My brother has identical twins one diagnosed 2years ago aged 9 and the other twin last month. I've heard they look up to me and that makes me want to do better, so I'm doing it slowly. And the comments above are good too. But find something that's makes you want to do this, a long term reason and start slowly. If you go whole hog it can get overwhelming and not encourage you to continue. I've done it enough times and it's like those fad diets people Do, all in for a week or two then go back to the old ways.
Find your reason and a person to talk to openly to encourage you on but not to nag you about it! Best of luck x

novorapidboi26 · Jun 7, 2017

For me, DAFNE was what changed it all.......

A simple, methodical approach to dose adjustment is all it took, that and seeing my blood sugars actually behaving [for the most part] as expected too.....

If you haven't had DAFNE or a similar course....its a must.....

Lilireth · Jun 7, 2017

catapillar said:
Hi @Lilireth sorry to hear you are struggling and feeling so low.

Having type 1 diabetes is really tough. It's hard to hear that you think of yourself as "failing" or that you're afraid of the number you will see when checking. I think you're right, you do need a different mindset (I appreciate that's easy to say and not so easy to do). Try to stop thinking of the numbers as good or bad or success or failure. They as just numbers, nothing more, simply numerical figure with no power and no judgement. All the numbers do is give you the information you need to be able to manage your diabetes. They help you make the decisions you need to control them.

You must know you need to test. Try and set yourself small goals to increase your blood tests: like this week I'll test once a day, or I'll test in the morning and before, and you can slowly increase to before every meal, and then after as well.

Try and clear you head before you test. Take a deep breath. Ban words good and bad and success and failure. They are just cold hard numbers.

Remember, the numbers don't have any power. You're the one with the power. You're the one who can make decisions to control the numbers. But in order to be able to do that, you need to actually know what the numbers are.

Thank you so much for the advice. Sometimes it just feels like I'm alone in the struggle. I'm actually having an appointment with a new endocrinologist today, so I will be talking with her about all of this as well.

I guess I just need support, and I'm glad I can find it here.

Lilireth · Jun 7, 2017

helensaramay said:
Have you thought of getting a CGM?
It does not completely replace your fingerpricks but you will have a some numbers regardless of whether you test or not. I understand this will be scary. At least your pump will be able to help you correct if the numbers are not as good as you like.
Also, a new piece of kit may help you refocus again .... like you did when you first had the pump.

The downside of a CGM is the cost. There are a few options such as asking your healthcare team if they could help or trialling a Libre (they were offering free trials last year which is worthwhile checking out) to see if it helps.

Diabetes is a pain. I think of it like a sneaky young child who, when all is quiet, you wonder what they mischief they are planning next. But, just like an annoying child, you can train it. And just like a child, even when they are well behaved most of the time, they will mess up just to test you sometimes. It doesn't mean you are a failure: just that life is not easy and fun all the time.

I actually had a CGM for a little while and I loved it. My diabetes had never been under so much control. But my insurance wouldn't cover it, even after they said they would. They sent us a huge bill unexpectedly, and there was a lot of drama, so I had to stop using it.

Thank you for understanding and for taking the time to reply to this..

Lilireth · Jun 7, 2017

azure said:
Welcome @Lilireth

You're not a failure, you're a strong person because you've lived with Type 1 all those years. It can be very wearing - as we all know.

My tip is to change how you see the blood test result. See it as solely a piece of information that will help you beat down the diabetes, not as a judgement on yourself. Knowledge is power. Know your blood sugar and you have the information you need to get one over on the Type 1.

Start by tssting a set number of times a day at set intervals - maybe first thing and before meals. If you see a high number, don't think "I'm a failure", think "Ah! That's a useful bit of info. I'll use that to land a blow on the diabetes!"

If your blood sugar is high, it's high. Not testing won't make it low. It will still be high - except you won't know about it and so won't be able to improve things.

Testing is a great tool in our fight

Hi azure,

Thank you for this. It really helps to hear positive encouragement. Sometimes it feels like the people in my life constantly point out the negative in my lack of control of my diabetes, like my mother. I've decided to start with smaller goals. I'm a perfectionist and hold high standards in other areas of my life, so I'm bad about setting my expectations too high for myself. Thanks for replying!

Lilireth · Jun 7, 2017

novorapidboi26 said:
What level of control did you have to achieve to get the pump if you don't mind me asking?

My endocrinologist had me test 3-4 times a day for 3 months straight. If I missed a day I would have to start over again. It was for the insurance company, to prove that the pump would have an effect on my blood sugar levels.

I had to do the same for my CGM, and that went well also. It was having that goal to strive for, and the negative consequence of not getting the technology that I knew would help.

I don't have a CGM now because my insurance did not fully cover it.

Lilireth · Jun 7, 2017

paulliljeros said:
I was in a very similar situation as you are with not testing. I had terrible control, and knowing I needed to test, but I just couldn't get round to it. There was always a reason not to, or I simply forgot, having already started eating before I remembered, and then deciding, I may as well wait until the next meal. Firstly, even if you have bad results, I promise it's well worth it, because once you start improving your control, the rewards are immense. Have you read "Think Like a Pancreas" and/or "Sugar Surfing"? And if you can possibly afford it, invest in CGM or Flash GM, as this was the turning point for me.

That is exactly how I feel. I simply forget or decide that, since I've already started eating, it will affect the result and so I wait.

I haven't read either, but I've seen a lot of posts on here about "Think Like a Pancreas," so I think I'm going to check it out.

Also, I had a CGM for a short while, but my insurance did not cover it.

Thanks for replying, and for letting me know that I'm not the only one who has had this problem.

Lilireth · Jun 7, 2017

Phillippa said:
I understand exactly how you feel because I'm the same. Diagnosed at 3 and almost 30years later I'm a disaster. I want to be better at the testing and eating better but I rarely do. Don't know if I moved into a denial type mode etc but so hard to get the motivation to change. When I was small my mother didn't test my sugars much and I continued on I suppose. My brother has identical twins one diagnosed 2years ago aged 9 and the other twin last month. I've heard they look up to me and that makes me want to do better, so I'm doing it slowly. And the comments above are good too. But find something that's makes you want to do this, a long term reason and start slowly. If you go whole hog it can get overwhelming and not encourage you to continue. I've done it enough times and it's like those fad diets people Do, all in for a week or two then go back to the old ways.
Find your reason and a person to talk to openly to encourage you on but not to nag you about it! Best of luck x

Thank you so much! It's the motivation that I'm struggling with. As I'm in my twenties, it almost feels like any repercussions are years down the road and I don't have to worry about it. But I know that I need to change my habits... easier said than done, right?

paulliljeros · Jun 7, 2017

Lilireth said:
That is exactly how I feel. I simply forget or decide that, since I've already started eating, it will affect the result and so I wait.
I haven't read either, but I've seen a lot of posts on here about "Think Like a Pancreas," so I think I'm going to check it out

Whatever I do, I need to see results in days, and sporadic testing meant the tests results held no meaning, and lack of understanding how to action meant I'd give up before I ever got started.
I would consider reading Sugar Surfing. You sound like you need goals, and this will show you the benefits of testing, and what you can achieve if you do lots of tests. I read the book, and decided to test 6 or 7 times a day for a couple of weeks. If it didn't help, then I would try something else, but that way, I didn't see it that the rest of my life was about to be consumed by endless testing! Once I started building the BG profile, I used the information in the book to start sugar surfing, and thats when I realised how much of a positive impact the testing was having.

amylh1 · Jun 7, 2017

Hey @Lilireth I was diagnosed at 15 and I'm 20 now. For over 4 years I have had this problem too. Like you hypos (mainly) cause me major anxiety and just the fact I have this disease makes me depressed. I haven't had a hba1c below 9% since diagnosis. It's hard but since the beginning of the year I've realised it's not gonna go away anytime soon and I just need to give it my best shot, take it easy and not keep beating myself up about not 'getting it' like everyone else seems to. I wanna have a family, live a long happy life and I already have background retinopathy and don't want it to get worse. All I can say is try your best, test a little more, talk to the nurse? (that's what I've been doing). I hate testing for the same reason as you and am thinking of getting a CGM but I only work part time and they are pricey! I'm only just realising how lucky I am to be relatively healthy in every other aspect & have the access to medication and healthcare that we do. Like I said it's hard & I still have those days where I'll actually count carbs properly & it still is high 3 hours later, or when I can't be bothered to get out of bed even tho I'm desperate for a **** and know my bg is about 24.7. Lol.
I'm so glad I came on this forum because I've realised I'm not alone, I'm not the only one who struggles.
Take care and if you ever need to talk message me
Amy x

NoMemories · Jun 14, 2017

I know exactly how you feel, experienced a lot of feelings of failure myself. It does get better with control - a lot of experienced people keep telling me this anyways

himtoo · Jun 14, 2017

@Lilireth
your topic has opened up a completely normal way that loads of type 1's feel --
I have been doing this Sh!t for nearly 45 years -- and none of us are failures

we are all people trying our best to be "normal" with a chronic disease piled on top.

hopefully we can all be the little spur to help you to see that taking control is about YOU being the best you can be -- not to satisfy a doctor or family or friends ---- you ARE important -- and just need to put yourself first !!!!!!!!

Mairi23 · Aug 3, 2017

Lilireth said:
Hello,

I'm new to this site. I just joined because I'm tired of being such a failure with my Type 1 diabetes. I was diagnosed when I was 11, and I've had ups and downs with it. It causes me a lot of stress and anxiety, and I often shut down and get depressed because I can't seem to find that magic mindset. My biggest problem is checking my sugar.. I know that I should, but I'm always afraid of the number I'll see. So I don't test, which basically guarantees a high result anyway. It's to the point where I've been in the hospital for DKA twice since I was diagnosed. I was good for a while so that I could get a pump, but once I got it I stopped checking again. The pump is the only thing keeping me alive right now. My last A1C was about 4 months ago and it was around 11%.

I'm just sick of always failing at controlling my diabetes. I'm depressed and I'm overwhelmed and I could really just use some advice. Thanks in advance to anyone willing to offer some advice!

I totally understand how you feel! I feel like a failure with my diabetes too and i've been in hospital about 10 times in the last 3 years with DKA. Its mentally and physically draining living with diabetes and its even harder when you feel like no one understands what you're going through. I've just joined the forum so hoping chatting to people will help. I think its important to know we're not alone and there are lots of us in the same situation!
Feel free to message any time

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