Diabetes Distress

MauraH said:

I thought I was depressed but my nurse educator told me about diabetes distress-- that persistent feeling of being overwhelmed by diabetes--the anxiety over readings, the worry about complications, the oppressiveness of the incessant need to plan, the sinking feeling you get when you realize there's nothing here (wherever you are) that I can eat, etc. This feeling can no doubt lead to burn out. I'm in month 3 and still confused and overwhelmed. Every time I turn around there is something new to learn, another adaptation to make, more planning to be done, the identification of another food that increases my readings, etc. Then there are the ill-informed remarks from people I mentioned my diabetes to and shouldn't have: "Oh, everyone has that these days"; "Cut back on ham and red meats (which I don't eat) and you'll be fine" (my doctor); "all you need to do is carry some candy around with you"; jokes about losing body parts, etc. So now I am very private about it and have not told my employer. But that means hiding and carrying a secret around. I also have hypothyroidism. When does the distress phase end? What have others done about it?

I've attached the link to the Diabetes Distress Screening Scale: http://www.diabetesed.net/page/_files/diabetes-distress.pdf

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Thanks for the link, I will keep that up my sleeve for sharing with people. When I was diagnosed 4 years ago I was obsessive about low carbing and diabetes for about 3-4 months, then I went too far the other way and stopping thinking about it at all. Now I try to keep it in the proper perspective: I need to low carb as best I can and have regular check ups, while ignoring diabetes and getting on with my life.

My low carbing regime is super simple. I don't really count carbs or weigh anything, I just avoid the foods I know have more than 10% carbs and eat as much of the others as I need to feel satisfied.

I only test every now and then these days. You could look at testing every second day then dropping to one day a week perhaps? One thing that might help you is to compare your HbAic at diagnosis with 3 months later, and to keep having this test 3 monthly until you are in the normal range then drop to 6 monthly. They might prefer you to have fewer tests but I think the cost is worth it if it reduces your anxiety.

Regarding complications, you really have nothing to worry about if you are keeping your BGs in the normal range most of the time. I've found that the Blood Sugar 101 website has really good in depth and accurate info about diabetes. You may feel reassured after reading this blog post:
http://diabetesupdate.blogspot.co.nz/2008/06/how-long-does-it-take-to-develop.html

In addition to keeping your BG low, I suggest you get your blood pressure checked every 3 or 6 months and if it is over 130/80 then look at your treatment options. Managing BG and BP and getting the scheduled liver and kidney tests and eye and foot checks should be enough to keep the risk of complications at bay.

I hope my reassurance and that of others will help you to reach the end of the distress phase as soon as possible.

MauraH said:

Then there are the ill-informed remarks from people I mentioned my diabetes to and shouldn't have: "Oh, everyone has that these days"; "Cut back on ham and red meats (which I don't eat) and you'll be fine" (my doctor); "all you need to do is carry some candy around with you"; jokes about losing body parts, etc.

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You don't say whether you're type I or II, but If your GP thinks cutting back on ham and red meats is going to be fine I can see exactly why you're stressed. I've been very lucky I suppose, none of my friends or acquaintances have ever made a stupid remark. Hopefully things will settle down as you get used to new routines and habits. It might take a while to suss out exactly what carbs affect your BG but from what people have said on this and other forums, certain carbs affect different people in different ways.

It's a nice idea to have an HbA1c every three months, but that will depend on where you live, I see you're from Canada, am I right in thinking that not everything is free at source like the UK's NHS. We're lucky to get them every 6 months and every year seems to be normal. It does depend on where you live and to a certain extent, who your doctor is, it's variable.

As for telling people, I only told the people that I thought needed to know, I told my employer simply because of an experience with a former work colleague who collapsed at work, he was type I, he had told our employer and us, so when he did collapse (we'd been desk moving) and we smelled aniseed on his breath, we were in a position to act quickly, we even knew where he kept his glucose tablets in his jacket and his desk. Had we not been told, had we not then learned what to do, we would have waited for the medics to turn up.

All the best.

graj0 said:

It's a nice idea to have an HbA1c every three months, but that will depend on where you live, I see you're from Canada, am I right in thinking that not everything is free at source like the UK's NHS. We're lucky to get them every 6 months and every year seems to be normal. It does depend on where you live and to a certain extent, who your doctor is, it's variable.

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It's not just a nice idea, it's important for managing diabetes if BGs are above the target range, wherever you live. If people are seeing their doctor for something else at around the 3 month mark, and especially if they are having other blood tests done, if they don't have normal-range BGs they should ask for an HbA1c. I think if a doctor says no, then they don't really understand how diabetes should be managed. I don't know what this test costs but the effects of high BG even on short term symptoms and illnesses are likely to involve greater cost to treat. I've never had a doctor refuse to test for something important and I think if I did I'd go elsewhere.

Diabetes distress can occur due to the daily responsibilities of diabetes management, Fisher says, but it can also be triggered by significant changes in your condition, such as starting insulin therapy or finding out that you have signs of diabetes complications, such as high blood pressure or eye problems.

Fisher and his team have been looking at approaches to identifying and handling diabetes distress. Results of one of their studies, published in the June 2013 issue of Diabetes Care, showed that interventions specifically designed to reduce diabetes distress and improve self-management led to healthier eating, more physical activity, and better medication adherence.

Fisher also points to the intertwining of diabetes distress and managing the condition. Diabetes distress might make it harder for you to manage diabetes, but it could also be a result of feeling like your efforts to manage diabetes aren’t working.

If you talk to your doctor about feelings of diabetes distress, you might be given a paper scale to fill out or be asked directly how well you think you’re managing your diabetes, how anxious or sad you are about your diabetes, if you feel like diabetes is taking over your life, and if you feel like people around you are supportive of your diabetes management efforts. Answering these questions honestly can help you and your doctor find solutions.

Strategies for Dealing With Diabetes Distress

Fisher notes that many people with diabetes struggle in silence with negative feelings about the condition. Just knowing that diabetes distress is a real and common experience can reduce feelings of guilt or failure. Then you can try these strategies to cope with diabetes distress:

Talk to your doctor. Fisher’s research has shown that addressing diabetes distress directly can help you feel better. But keep in mind that your doctor won’t always see the signs, so let him or her know if you’re feeling anxious, overwhelmed, or burned out, or just tired in general. “Say, 'I need to talk to you about how I feel,' ” Fisher says. Letting your doctor know what's worrying or overwhelming you can lead to better diabetes education and more diabetes management tools.

Involve your family. Concerned family members often try to help with diabetes care but might feel helpless, especially if diabetes distress intensifies. Bring your loved ones with you to medical visits so they can be part of your diabetes management plan, or give them practical ways to help, such as joining you for fun physical activities or trying new, healthy foods.

Join support groups. Getting to know other people who are living with the challenges of diabetes can help you know you’re not alone and that your feelings and experiences are normal. If attending a meeting in person isn't possible, try making an online connection.

Treat diabetes and depression. Diabetes distress and depression are different conditions, but they can occur together. People with diabetes have higher rates of depression than their peers, and depression can complicate diabetes management. If you think you're experiencing emotions that could go beyond diabetes distress to depression, such as hopelessness, sadness, and lack of interest in things you once enjoyed, seek help. Diabetes and depression can both be treated.

If you’re feeling overwhelmed by diabetes, know that this is normal. You’re not alone, and with the help of your doctor you can find relief from these feelings, get your diabetes under control, and live healthier and happier.

CatLadyNZ said:

It's not just a nice idea, it's important for managing diabetes if BGs are above the target range, wherever you live.

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The NHS doesn't work like that, they quite often seem to be concentrating on their budgets rather than the patient. Trust me, I'm a doctor. Sorry for the pun, couldn't resist it. It really doesn't matter what you or I think and the only reason I called it a nice idea, the reality of the situation is that here in the UK, and even then it will depend on what area, you'll be lucky lucky to get an HbA1c every 3 months, you might get them every six months (as I used to) but annual might be all you get (like I do now).

I should stress that I'm talking about type IIs and that it will vary from practice to practice, health authority to health authority, region to region.

graj0 said:

The NHS doesn't work like that, they quite often seem to be concentrating on their budgets rather than the patient. Trust me, I'm a doctor. Sorry for the pun, couldn't resist it. It really doesn't matter what you or I think and the only reason I called it a nice idea, the reality of the situation is that here in the UK, and even then it will depend on what area, you'll be lucky lucky to get an HbA1c every 3 months, you might get them every six months (as I used to) but annual might be all you get (like I do now).

I should stress that I'm talking about type IIs and that it will vary from practice to practice, health authority to health authority, region to region.

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If your HbA1c is in the non diabetic range and you haven't made drastic changes to your diet then you may not need them more often than annually. But people who are likely to have a high or significantly increasing HbA1c need more frequent testing. The NZ guidelines say testing is to be 3 monthly if the HbA1c is over 55, and then if lower it is 3-6 monthly. (Our guidelines are based on the Scottish ones). Hopefully the UK will adopt this practice one day, because I think the research would support it as being more cost effective than reducing the monitoring. In the meantime I encourage people to be assertive with doctors who don't want to monitor often enough.

Hi and it's nice to meet you.
After 26 years of type 1 I am still learning. Sometimes though, I could scream and cry and I wish I didn't have it, but life goes on and I wont let it beat me, I just keep ploughing through and I wont let it engulf me or take over my life.
Just having the support and helpful advice from others is half the battle, as it does help to know that we are not alone
Take care, RRB.

CatLadyNZ said:

The NZ guidelines say testing is to be 3 monthly if the HbA1c is over 55, and then if lower it is 3-6 monthly. (Our guidelines are based on the Scottish ones).

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There are NICE guidelines and then there is reality. As for being assertive with GPs, some of them really don't like it, you have to handle them with kid gloves, they have a tendency to throw their toys out of the pram. Perhaps we should start another message thread because discussing NICE and the UK's NHS is going off topic big time. Interesting though.

BTW, Scotland's guidelines which aren't the same as the rest of the UK but are based on NICE guidelines, sort of.

Well I have to leap to the defence of the care we receive in my area of England. I was diagnosed with an A1c of 53 after having a FBG of 7mmol/l on a routine blood test. I was immediately put on the diabetic care pathway as suggested by NICE. I had 3 monthly A1c checks until I was stable at an A1c of 43, and am now on 6 monthly checks. I get all the other blood tests for liver/kidneys/FBC/cholesterol etc every 6 months, have my eye and foot tests annually, and can phone my nurse whenever I want. I also asked for an interim cholesterol test when I was put on 6 monthly because I was concerned my levels may have deteriorated after increasing my fat intake by a lot. I got the test and they threw in an HbA1c as well. I have no negative issues with my care at all other than the usual poor dietary advice.

graj0 said:

There are NICE guidelines and then there is reality. As for being assertive with GPs, some of them really don't like it, you have to handle them with kid gloves, they have a tendency to throw their toys out of the pram. Perhaps we should start another message thread because discussing NICE and the UK's NHS is going off topic big time. Interesting though.

BTW, Scotland's guidelines which aren't the same as the rest of the UK but are based on NICE guidelines, sort of.

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Fair enough, we are getting off topic. Assertiveness with GPs is relevant to most things, however. I will just say this - I don't give a rat's backside if a doctor throws their toys out of the pram. They can grow up and explain themselves to the complaints body. They are hired to work for us, remember. My health is too important to be put aside for the sake of some incompetent and/or arrogant doctor.

Hi. I live in Dorset and my doctor has been really good she was very helpful . I went to see her about my eyes . While I was with her she even called my local hospital told them my symptoms . And made an appointment for me for the next day . I have type2 and on medication and have been given a meter and strips on prescription . I love to learn so over the last few months have done a lot of reading .and one of the things that strikes me is where you live makes so much difference to how you are treated . But this should not be the case
Clive

CatLadyNZ said:

Fair enough, we are getting off topic. Assertiveness with GPs is relevant to most things, however. I will just say this - I don't give a rat's backside if a doctor throws their toys out of the pram. They can grow up and explain themselves to the complaints body. They are hired to work for us, remember. My health is too important to be put aside for the sake of some incompetent and/or arrogant doctor.

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I'll start another thread, GP complaints, it will be interesting to discover other people's experiences, views, attitudes.

I really identify with this. I have always felt tough and adaptable, but after diagnosis I got very anxious about eating out, camping, going on holiday, all that.
I've told people close to me about my diagnosis and had a few laughs as some of them exclaimed "What? You've knackered your pancreas THAT MUCH?" Even very good friends ask if I'm 'still' on that diet, as if it's something that will go away.

I've settled down now that I've had some practice, and discovered I'm still tough and adaptable and can find my way through most situations. I'm nearing the end of my first year and although I sometimes feel depressed, overwhelmed and fearful, I mostly know that I'm living a more healthy lifestyle and feeling better since I was diagnosed. Whenever it gets too much, I just come on here. All I need to do is read a few posts on the 'what have you eaten today?' threads to cheer up!

Hello all, if stressed do you find your blood sugars go up quite quickly? Mine have gone from 7 - 18, despite eating and carb counting a meal I eat regularly, giving the correct insulin dose. Thanks

MauraH said:

I thought I was depressed but my nurse educator told me about diabetes distress-- that persistent feeling of being overwhelmed by diabetes--the anxiety over readings, the worry about complications, the oppressiveness of the incessant need to plan, the sinking feeling you get when you realize there's nothing here (wherever you are) that I can eat, etc. This feeling can no doubt lead to burn out. I'm in month 3 and still confused and overwhelmed. Every time I turn around there is something new to learn, another adaptation to make, more planning to be done, the identification of another food that increases my readings, etc. Then there are the ill-informed remarks from people I mentioned my diabetes to and shouldn't have: "Oh, everyone has that these days"; "Cut back on ham and red meats (which I don't eat) and you'll be fine" (my doctor); "all you need to do is carry some candy around with you"; jokes about losing body parts, etc. So now I am very private about it and have not told my employer. But that means hiding and carrying a secret around. I also have hypothyroidism. When does the distress phase end? What have others done about it?

I've attached the link to the Diabetes Distress Screening Scale: http://www.diabetesed.net/page/_files/diabetes-distress.pdf

Click to expand...

I know exactly how you feel (although I don't have hypothyroidism). I may have also have another health condition

It's such a learning curve and I'm desperately trying to get things "right" and manage it. I know what you mean about thinking what you can eat - it becomes almost an obsession with food - how many carbs, what's the sugar content?, how much fat etc etc, especially when eating out.

My manager told me she knew people who had readings ranging from around 14-18 when testing their blood sugars and mine (at the higher end of 9) was on a much lower scale of seriousness!!! :***: I felt that my symptoms and general feeling of unwellness was being dismissed and I was over-reacting. I was also feeling very nauseous and "shaky" yet had turned up for work. It just isn't that simple is it?

I'm going to have a look at the link you've shared in a minute . . . .

MauraH said:

Hi everyone, To answer your questions and I am T2 and very lucky in the sense that here in Canada health services are free at source and my endocrinologist is testing me every 3 months. (My GP is nice but ill-informed about diabetes, however.) I also have access to a diabetes services dietician, although she is conservative and wary of low carbing, a diabetes nurse who does the annual foot tests, distress assessment (I'm above average on the scale), etc. The local hospital has a 6 week course in chronic disease management led by peers starting soon for which I am registered (also free). All conditions are included in this course, although I know many of our issues are disease-specific.

I used to live in the UK and I see all the remarks about access to services and I feel terrible. I really hope it changes. (My very supportive husband, who is British, and I talk about retiring back in the UK in 20 years but health services might prevent that.)

In spite of all these services, I still feel distress 2 1/2 months since diagnosis, and guilt as well since I have such great services. I'm going to test every second day and figure out which foods to avoid. My blood pressure is low, probably because I have hypothyroidism.

I will check out the Fisher article. I know talking is important which is why I've been posting. And it does help.

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Hi, MauraH, maybe also if you are recently diagnosed your body is still adapting to getting higher blood glucoses under control and so will probably not feel ok? when i was diagnosed type 1 years ago i was told i probably would not feel right for a while - this alone might make your distress worse? Also, unless your hypothyroid disease is not fully treated, this condition in itself should not make your blood pressure low - you may just have low blood pressure, of course, but it might be an idea to check your thyroid profile again? If tests show you are still a bit hypothyroid this would not help you cope with diabetes distress - i also have hypothyroid disease and have learnt that a low pulse, feeling chillier, lower blood pressure, mood drops, etc are a sign i may need more meds. Hope things improve soon, Ann

Ewb10 said:

Hello all, if stressed do you find your blood sugars go up quite quickly? Mine have gone from 7 - 18, despite eating and carb counting a meal I eat regularly, giving the correct insulin dose. Thanks

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I do. Just about to do a 24 urine collection to be tested for too much hormone as I don't react well to stress any more. Specialists request.