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What is the hardest part of coping with diabetes?

For me diabetes has been a very positive experience because I'm now fitter than I have been for over 30 years.

However I do hate it when doctors/diabetic nurse ask me about my mood. I understand that some people get depressed with diabetes which must be a horrible experience for them, but I hate the assumption that we're all going to be that way. That's what put me off going on the DESMOND course - the questionnaire about my feelings. I had it doubly at the start because of my stroke - was I depressed about that? Nope, I wasn't depressed, but very grateful to be alive and have a second chance, to have a condition that I could control myself and I just got on with it.
 
Being relatively newly diagnosed the hardest part of coping with Diabetes for me is the need to change my lifestyle, ditch previously held beliefs regarding what made up a healthy diet and yet not become totally obsessed by the whole process.
 
For me having a sweet tooth makes things 10 times difficult, i love chocolate with an absolute passion. I can go some days without it but then I will sometimes binge eat it. I'm not a savoury person at all so have found low carb hard so I don't. I just carb count.
 
didie said:
For me diabetes has been a very positive experience because I'm now fitter than I have been for over 30 years.

However I do hate it when doctors/diabetic nurse ask me about my mood. I understand that some people get depressed with diabetes which must be a horrible experience for them, but I hate the assumption that we're all going to be that way. That's what put me off going on the DESMOND course - the questionnaire about my feelings. I had it doubly at the start because of my stroke - was I depressed about that? Nope, I wasn't depressed, but very grateful to be alive and have a second chance, to have a condition that I could control myself and I just got on with it.
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As some people do get depressed then your doctor (can't say for sure about DSN) has a little box to tick to say if he's asked you about it or not. It's all part of their incentive scheme for diabetes. I was asked around 2 months ago by my doctor, 4 years after diagnosis. :)
 
Balancing the importance of managing it with trying to live a normal family life............And yes you can never let you guard down.
 
As a parent of a child with diabetes the hardest part for me has to be the fact that you never get a break from it, it's relentless, it never sleeps, has a weekend off or goes away on holiday. Whatever you do and wherever you go it's there constantly demanding attention - either dosing insulin, checking bg, set changes or calculating food, snacks and exercise. When your child becomes ill it steps up a gear and becomes like a demanding nagging pain in the rear end threatening a rise in ketones and a hospital admission if you get it wrong. I would love to be able to give my daughter (and myself) an occasional break from diabetes so that she can go for a sleep-over, have a holiday or a fun day out without fussing over the management of it all.

I asked my daughter what she finds the hardest part. Her answer: having to be sensible about what she eats when all her friends are eating what they want and she knows that she can't do the same. She is referring to functions like parties and school fetes where the other kids might be having cakes, sweets, ice cream etc. She is allowed one treat but can't have all of those things together like some of the other kids will do.
 
For me as a T1 it is making my hubby understand that I am not following a 'no fat', 'no salt', 'high carb' diet.
 
I think I should apologise beforehand . . .

Bear in mind that I'm Type 2, was diagnosed very early, and knew all about low-carbing (or at least Atkins) before I started . . .

I find coping with my diabetes very easy. I've been dieting for weight loss for the past 45 years (at least!) without success, so I am used to not being able to eat sticky cakes or puddings or sweets or chocolate. They have not been a regular part of my menu for many years. I miss bread, but can still eat it occasionally.

I'm learning lots of new things every day. I have an excellent medical practice who on the whole work with me, not against me, and in general understand what I am doing and agree with me. Anyway my results speak for themselves! Most of my friends, and all my family, know about diabetes and my way of eating (now! :twisted: :lol: ). It doesn't stop me enjoying going out for a meal; I can even eat fish and chips occasionally :roll: . I still drink, but it's making me think harder about that too! :oops:

I'm fully aware that the best control in the world may not stop me from getting complications later - but I'll worry about those when they happen, not today.

In fact, the only problem I have is spending too much time on this d**n forum with a host of new friends! :lol:

Viv 8)
 
SophiaW said:
As a parent of a child with diabetes the hardest part for me has to be the fact that you never get a break from it, it's relentless, it never sleeps, has a weekend off or goes away on holiday. Whatever you do and wherever you go it's there constantly demanding attention - either dosing insulin, checking bg, set changes or calculating food, snacks and exercise. When your child becomes ill it steps up a gear and becomes like a demanding nagging pain in the rear end threatening a rise in ketones and a hospital admission if you get it wrong. I would love to be able to give my daughter (and myself) an occasional break from diabetes so that she can go for a sleep-over, have a holiday or a fun day out without fussing over the management of it all.

I asked my daughter what she finds the hardest part. Her answer: having to be sensible about what she eats when all her friends are eating what they want and she knows that she can't do the same. She is referring to functions like parties and school fetes where the other kids might be having cakes, sweets, ice cream etc. She is allowed one treat but can't have all of those things together like some of the other kids will do.
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This post has tugged at my heart strings ,
it cant be easy for the youngsters and their parents,
As they walk every step of this journey with their child...
So true sophia it is a condition that never sleeps nor gives us a day off !
Much love and thoughts to both of you.
Anna.
 
anna29 said:
SophiaW said:
As a parent of a child with diabetes the hardest part for me has to be the fact that you never get a break from it, it's relentless, it never sleeps, has a weekend off or goes away on holiday. Whatever you do and wherever you go it's there constantly demanding attention - either dosing insulin, checking bg, set changes or calculating food, snacks and exercise. When your child becomes ill it steps up a gear and becomes like a demanding nagging pain in the rear end threatening a rise in ketones and a hospital admission if you get it wrong. I would love to be able to give my daughter (and myself) an occasional break from diabetes so that she can go for a sleep-over, have a holiday or a fun day out without fussing over the management of it all.

I asked my daughter what she finds the hardest part. Her answer: having to be sensible about what she eats when all her friends are eating what they want and she knows that she can't do the same. She is referring to functions like parties and school fetes where the other kids might be having cakes, sweets, ice cream etc. She is allowed one treat but can't have all of those things together like some of the other kids will do.
Click to expand...
This post has tugged at my heart strings ,
it cant be easy for the youngsters and their parents,
As they walk every step of this journey with their child...
So true sophia it is a condition that never sleeps nor gives us a day off !
Much love and thoughts to both of you.
Anna.
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Me Too Anna............this is a point I was trying to make on another thread! I dont know how being a parent of a T1 child and being a T1 child cant be so much more difficult, emotionaly as well as practicaly.

I Applaud you and send you and your daughter Huge Hugs as you both derserve it xxx

Lucy :thumbup:
 
didie said:
However I do hate it when doctors/diabetic nurse ask me about my mood. I understand that some people get depressed with diabetes which must be a horrible experience for them, but I hate the assumption that we're all going to be that way. That's what put me off going on the DESMOND course - the questionnaire about my feelings. I had it doubly at the start because of my stroke - was I depressed about that? Nope, I wasn't depressed, but very grateful to be alive and have a second chance
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This only started around 5-7 years ago when they would ask you about depression, as Scardoc says they are obliged to ask this given the high incidence of depression amongst people with diabetes and need to record your reply.
 
The hardest part for me has been accepting it.
It was easier on first diagnosis as I was terrified but as time went on I have become more complacent.
I'm finding it **** hard to give up the chocolate and often find myself saying "one wee bit won't do any harm". Problem being I can't stop at one wee bit :oops:
I am terrifed of complications but I think a major factor is not having any immediate ill effects when eating something you shouldn't. If it caused pain or something then it would be alot easier not to eat it!
I know it's all down to willpower and strength of character and there are so many people on here who are doing so well. I must admit to being just a little jealous of them :mrgreen:
Finding this forum, however, has got to be the best way of coping with diabetes. Being able to learn and discuss with others who feel exactly the same way as you. And I've made new friends at a time in my life when I really needed them.
 
Thanks Ana and Lucy :) It can be challenging to be the parent and also very difficult for the child. When I look at Jess and see how much she accepts and accommodates because of it I think she's a remarkable and wonderful person, she has every reason to have a tantrum or strop but never does. I don't think I could take it all in my stride so well like she does (and everyone here on this forum) with so little complaining. I expect everyone with diabetes has those "argh!!!" moments and feel somewhat dictated to by the condition at times. The support from everyone here is wonderful and it's good to visit this forum as it keeps me focused and on track, stops me from becoming complacent about keeping on top of things.
 
The hardest part for me is coping with other medical issues as well as type 2 diabetes. I have fibromyalgia, COPD, IBS and NASH.Currently on 12 different medications apart from my insulin. Some symptons are similar to diabetes complications (nerve pain,tiredness etc..) I just plod on and hopefully now that my blood sugars are controlled, this will improve.
 
I'd like to echo what Sophia has said. The other hardest thing for me is the constant worry about my children's long term health.
The other night after a pod change my son's blood was high. We bolused and checked every 2 hours to avoid a low. It was only high for a few hours and there was no real concern. But I do get concerned and at times I just can't get rid of the feeling that this will effect him later on.  I know that feeling this way is silly but I know that if either of my children suffer even the smallest of complications I will always blame myself. I will always question whether I did enough and although this sounds mad, that is just the way I feel.

I know that I try and do everything I can to achieve good control, but in kids it is unbelievably hard and like Sophia says, you never get time off. A little stopwatch goes off in my head after every bolus, snack, high or low reading, reminding me when the next test is. Even if I'm out and my husband is in the 'chair', I still think and hope their bg's are on target!

Having said all the above, I think I do a pretty good job of managing 2 diabetic children and then I start to worry about other people who have diabetes who struggle more than I do!!
 
Hi all.
With these replies and input from the childrens parents.
I have often wondered do the children cope/adapt to it 'better' than us adults ?
Meaning do the children accept it as a life experience not knowing the difference
away from it due to being such younger ages when diagnosed.
Not knowing or having memories of life pre diagnosis.
Have wondered if I would have tollerated/adapted to it better if was far younger?
The childrens parents deserve a medal to cope with this lifestyle to implement and lead and tollerate.
Not to mention the sheer worry/stress it must bring at times for their so loved children.
Anna.
 
I really feel for the parents of children with diabetes. I am sure they would rather have it themselves. being a parent can be difficult enough wothout having to worry about a condition which is difficult enough for adults.

The most difficult thing foer me in dealing with Diabees is to have to cope with and to some extent be at the mercy of the HCPs in my local Practice. They have never been of any assistance to me . I ry to cooperate as far as i can but they appear to think I am
there for the practice rather than vice versa and have on several occasions behaved in a very highhanded fashion which has necessitated my having to complain to and about them.

Compared to this my frequent hospital attendances and procedures for my advanced retinopathy and macular oedema are no trouble at all. I totallty resent the money given to my Practice for my diabetes care. They are a hinndrance rather than a help in maintaining the good control I have achieved bylow carbing.thanks to this forum.

The money could be much better spent.

When asked at my annual review {as per the tick sheet] if I am depressed by my diabetes i always reply that I am not - just by the treatment of it in the Practice particularly by the nurses whom I do not feel I can trust.
 
I not sure whether I say anything was hard to cope with...

I know when my children was younger it was hard when their dad was on nights, I found it difficult worrying about hypo's overnight and getting help with the kids so young!

But in the main it what frustrates me...

Other people who think that they know better than me, and insist that I should do as they tell me! Such as when it comes to my diet, Food police are a real pain in the butt...
 
anna29 said:
Hi all.
With these replies and input from the childrens parents.
I have often wondered do the children cope/adapt to it 'better' than us adults ?
Meaning do the children accept it as a life experience not knowing the difference
away from it due to being such younger ages when diagnosed.
Not knowing or having memories of life pre diagnosis.
Have wondered if I would have tollerated/adapted to it better if was far younger?
The childrens parents deserve a medal to cope with this lifestyle to implement and lead and tollerate.
Not to mention the sheer worry/stress it must bring at times for their so loved children.
Anna.
Click to expand...

I have type 2, my daughter is also type 2 and was diagnosed in her mid-teens. She has a rare syndrome which also causes learning disabilities so it was a bit of a blow at the time, she coped very well with it and more or less took it in her stride. She as put on insulin very soon after diagnosis and she also had levemir and victoza as well. I think it is probably more of a problem (although I could be wrong) dealing with a teenager who has diabetes than a young child. Of course it is hard knowing that your little one has to go through injections but it is very difficult when your teenager refuses to take their insulin..it can be very worrying and was something that we came up against often. I found the hardest part was this, the refusal to take meds. Since I have joined this forum I have found so much info..can you beleive that I was never warned that my daughter might be at risk (albeit low) of having a hypo because of the insulin? Shocking when you think about it.

The hardest part of dealing with my own diabetes was the initial "you have got to be kidding me" reaction I had last year, I was so angry and distraught. Not really at the idea of the diabetes but the fact that I had it and would have to deal with that at the same time as dealing with my daughter who was putting us through hell at the time and needed 24/7 supervision and care.
I manage now, I have my blips especially when I am going through a depressive episode but I always manage to get back on track somehow. I could probably do better but am comfortable with how I cope..the diabetes itself doesn't depress me purely for the reason I know I can find the help I need here, whatever the problem. My numbers are within a range that I am happy with so it's not too hard. :)
 
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