Diabetes has ruined my life

[donnellysdogs]

The problem I have - personally - and it's a new problem, is that I get wildly different results from one day to the next. So when I eat I take a dose of insulin and risk either being high or low depending on what my blood sugar feels like doing. I usually err on the side of caution and take the lower dose and then half the time end up high but can't increase it as then I'd end up hypo a fair bit.
This is a new issue for me. I've spent 23 years without that being an issue. I can carb count etc... I'm not stupid and fully understand it. But it has become impossible to carb count with any degree of confidence and it's just easier not to eat.

Do ypu check ypur back ground baaal rates with testing?

Do you have different ratios for different times of day? Ie I can eat a cheese omelette... officially no carbs but I do have to bolys different amounts for different times of day... ie
Lunch bolus for an omelette would be different than a tea time bolUs?

Are you on any different meds atcertain times of day?

Do you count for protein/fat in meals?

Do yoy eat ready meals or fresh cooked? Fresh cooked can be more difficult unless weighing and who
Knows just how much carb exactly is in each individual asparagus tip or cauliflower etc???

Have you got a decent blood testing machine like the aviva expert?

Please dont give up... you can honestly get more balanced..oh and you are doing right by under not over bolusing...

 

[ExtremelyW0rried]

I've got a libre.

Basal rates must be ok since I can not eat for 24 hours or more and everything remains steady.

I need more insulin in the evening than the mornings if I eat which I know is unusual but I do get a dawn rise some days. It's just frustrating as eating the same food at the same time of day can result in a 5mmol or a 14mmol having the same amount of insulin. I've mentioned before that I'm really sensitive to insulin too so my margin of error is very tiny. 0.3u drops me 10mmol. My carb ratio roughly is 0.2u to 10g but sometimes it is double that and sometimes I don't need any insulin at all to eat. It is inexplicable. As I said it hasn't always been like this, it started during my second pregnancy and never went back to 'normal' afterwards.
It's made me frightened of the insulin as I've had such fast drops - 15mmol to 3mmol in half an hour with only 0.3u of insulin being a good one - and I'm in the unfortunate position where I'm scared to take it so would rather not eat.

 

[Ambersilva]

It is impossible to live life at all in my experience.

Tonight dh said let's get a take away as it's new year. Well obviously I can't eat anything from an Indian take away. I mean I can't eat an apple so I think rice may be out of the question.
Said I'd order something for him but I would just have a Diet Coke and now he's annoyed because he says he doesn't want one on his own. However if I order it and don't eat it he will be more annoyed as it's a waste of money. But I don't want to start 2018 with a blood sugar of 20 so will just cook something for him and the children and go to bed I think.

I've got this far as the above post in your Christmas disaster story and am amazed that you limit your food intake so much.

No way will I go hungry. Twice over Christmas we were invited to join relatives at an Indian restaurant. I included Tandoori Roti and two Poppadoms with my choice of Main. The second time I included rice and poppadoms. No problem. I Just estimated the carb and protein content and injected accordingly. We also visited an Italian restaurant twice and had Christmas Dinner two days running. I did reach a BS level of 14 after the first Indian meal but was able to correct so that I was back down to the 7s before bed. At home we explore a variety of international foods.

Do you know that your blood sugar can still rise even if you do not eat anything. Your liver acts as a glucose manufacturer and reservoir to release glucose if your body thinks you are starving. Some of the more scientifically minded members can probably explain the process much better that me!

In response to your comment about not taking your children to theme parks. Over the years we have taken our Grandchildren to museums, theme parks and other places of interest while their parents are at work. Diabetes has certainly not stopped me from enjoying visiting these places with my Grandchildren. Now to enjoy the evening meal my hubby has just cooked while I read and responded to your thread. Best wishes for 2018

 

[ickihun]

The problem I have - personally - and it's a new problem, is that I get wildly different results from one day to the next. So when I eat I take a dose of insulin and risk either being high or low depending on what my blood sugar feels like doing. I usually err on the side of caution and take the lower dose and then half the time end up high but can't increase it as then I'd end up hypo a fair bit.
This is a new issue for me. I've spent 23 years without that being an issue. I can carb count etc... I'm not stupid and fully understand it. But it has become impossible to carb count with any degree of confidence and it's just easier not to eat.

Stress does that to bgs.
Can you not see. You are causing your own stress. No one else.

Please just talk to your gp about depression and get the right support.

 

[ExtremelyW0rried]

Stress does that to bgs.
Can you not see. You are causing your own stress. No one else.

Please just talk to your gp about depression and get the right support.

I agree stress doesn't help but I don't think this is stress causing this issue. I've had periods of stress before and I generally run high consistently. This

 

[Ambersilva]

But how would you have felt if either of your children had been diagnosed? I think that would have changed your outlook.

Perhaps I do feel like I'm a victim, I certainly felt that last night when looking on FB at photos of people who used to be friends going out and enjoying themselves. Meals, drinks, parties. I went to bed early having eaten nothing because I can't eat anything anymore, then had to wake and set my alarm every hour and a half to check my blood sugars.
How lovely it must be to just want to do something and do it. By the time I've considered an invitation for something and worried about the possible outcomes I usually decide not to go. People don't bother asking me to do anything anymore because they know I will say no - although I don't cite my diabetes as the reason.

My son is T1 but was diagnosed many years before me. Diabetes does not get in the way of his active social life with many friends including those he met while at Primary School.

When I was first diagnosed I was hampered by thinking that I could not act spontaneously. I have since then organised a 'grab and go' handbag so that if hubby decides he wants to eat out or go see a movie at short notice, I have all my essentials packed and ready to go.

 

[EllieM]

The problem I have - personally - and it's a new problem, is that I get wildly different results from one day to the next.

Hmm, just throwing out two possibilities.
1) Are you relying on libre results? It works for many people but for some people it can be wildly inconsistent and inaccurate.
2) Could it be an injection/pump site issue? (My control improved dramatically when my diabetic nurse pointed out I have some "bad" areas which I shouldn't use.)

 

[NicoleC1971]

We have probably all felt angry(why me) with diabetes and guolty ( drain on NHs and rubbish ay managong it)and then depresssed or isolated. I have but it will pass however if you do not seek help the pain might go on longer than necessary. It just sounds exhausting feeling this ill and miserable. There are great practical tips here but is thete anyone you can speak openly to? A part of me feels frustration at your current state of mind but that would be so hypocritical because I have been to so many of my own pity parties. However it is true that if you argue for your limitations you get to keep them. ...

 

[Fairygodmother]

ExtremelyWOrried, I’m not a doctor but I wonder if your hormone output has been altered by your second pregnancy? The menopause is notorious for creating wild bs responses in the early stages due to fluctuations of oestrogen and progesterone - could your second pregnancy have instigated an imbalance that has a similar effect? Is there a good hospital team where you live, or near? Could Your GP ask for you to be referred for investigations to try to discover what’s caused the changes in your reactions to insulin. It’s clearly creating difficulties for
you and it’d be great to find a way to deal with your fluctuating responses to doses of insulin. You could begin to enjoy life again.
Good luck!

 

[Grant_Vicat]

Not really!!

Because I had a 5 day coma aged 8, missed an entire winter term at school as a result, started nephropathy at 15 and retinopathy by the time I was 20, which had primitive treatment between 1978 and 1983. Have I said enough?!!
Sorry, I've just noticed that you wouldn't realise that I was Type 1 from 1959-2013 when I had a kidney/pancreas transplant. As you can imagine, life had its ups and downs!

 

[Bertyboy]

That's not reasoning, that's just ignoring facts that we don't like which is not reassuring at all. I am not able to do that and I don't make any apology for it.

My xmas and new year were absolutely great, I sat here for the last week eating omelettes listening to people going out with all their friends. And yes, I could go out and get smashed (I would like nothing more), I could go out and eat a ton and a half of carbohydrate but it is my decision not to do that because of the absolute horror movie it will store up for me in the future and the risk of being really unwell now if I get it wrong. That future is probably inevitable but perhaps I can put it off a bit.

That is a rational decision, that is not based on wishful thinking.

If any of this is wrong please tell me how. We have one life, do we? I'm not sure I have more than about a quarter of a life right now.

Yeah, but life is short enough as it is without another 11 years carved out of it for having diabetes. I don't see the point of going to great pains to prolong your life if it's going to be boring as ****. You might as well accept the fate of lady luck and enjoy yourself. And (here's the best bit) you don't have to eat crisps/fries/bread/rice/spuds in large quantities to achieve that, you don't need to have the dessert course and you can occasionally have a bottle of Shiraz and a bit of a boogie, or even just the company and conversation of some good friends.

 

[tigger]

@ExtremelyW0rried has your insulin changed in any way? I remember articles about some becoming more concentrated. However since you're on a pump it seems difficult to consider that the insulin which gives you such a steady basal could cause such wild fluctuations around eating and corrections. If it was just eating there might be other things to consider but corrections too suggests stress is a factor at least in culminating the problem. It is possible this did start in your pregnancy because you have much wider fluctuations then and it's very stressful as you're told every bad reading will damage the baby. It then for whatever reason has become a conditioned response since then. Does this sound like your experience? Do get yourself tested but my experience has been unless they know what they're testing for they have trouble finding the answer. Also if there are other hospitals near you consider a change or make an urgent appt and take your husband with to discuss in detail and get a solution. You shouldn't have to live like this.

 

[ExtremelyW0rried]

@ExtremelyW0rried has your insulin changed in any way? I remember articles about some becoming more concentrated. However since you're on a pump it seems difficult to consider that the insulin which gives you such a steady basal could cause such wild fluctuations around eating and corrections. If it was just eating there might be other things to consider but corrections too suggests stress is a factor at least in culminating the problem. It is possible this did start in your pregnancy because you have much wider fluctuations then and it's very stressful as you're told every bad reading will damage the baby. It then for whatever reason has become a conditioned response since then. Does this sound like your experience? Do get yourself tested but my experience has been unless they know what they're testing for they have trouble finding the answer. Also if there are other hospitals near you consider a change or make an urgent appt and take your husband with to discuss in detail and get a solution. You shouldn't have to live like this.

My pregnancy was very stressful. I'd had three unsuccessful rounds of IVF first and then fell pregnant naturally so it was all pretty fraught. It then ended with a very ill newborn on a ventilator on Christmas Day which was horrendous although thankfully my daughter is now fine.

Unfortunately the consultant id seen for years and trusted left just after I had my daughter and since then my appointments have been with different consultants - none of whom are permanent.
I don't really like the dsn as she basically implies if it isn't how it is supposed to be then you must be doing something wrong. I found her extremely patronising last time I saw her and feel reluctant to go back so I'm not sure where to go from here.
If I don't eat my sugars stay between 5-8. It's definitely eating that gives me the problem as it's so unpredictable. I've lost over a stone and a half over the last few months and my bmi is now just under 18. I know I don't have much more weight to lose but I feel like if I can't sort out my blood sugars no one else will be able to either. I told the stand in consultant about how erratic they were after food and he advised me to do basal testing and DAFNE. But it's no help. I KNOW how to adjust, I've been doing it for years. I've been on a pump for a decade.
I'm just stuck. I'm pretty sure the not eating is making me feel more depressed too.

 

[LouWilk059]

The problem I have - personally - and it's a new problem, is that I get wildly different results from one day to the next. So when I eat I take a dose of insulin and risk either being high or low depending on what my blood sugar feels like doing. I usually err on the side of caution and take the lower dose and then half the time end up high but can't increase it as then I'd end up hypo a fair bit.
This is a new issue for me. I've spent 23 years without that being an issue. I can carb count etc... I'm not stupid and fully understand it. But it has become impossible to carb count with any degree of confidence and it's just easier not to eat.

IF YOU DON'T EAT YOU WILL DIE. So eat. (I will refrain from commenting further.)

 

[EllieM]

I'm just stuck. I'm pretty sure the not eating is making me feel more depressed too.

Please be careful you don't transition to an eating disorder. It can be easy to slip into one if your BMI goes too low and then your reasoning about food issues can become untrustworthy.

 

[NoKindOfSusie]

I don't really like the dsn as she basically implies if it isn't how it is supposed to be then you must be doing something wrong. I found her extremely patronising last time I saw her and feel reluctant to go back...

I am starting to conclude that this is basically normal. I ended up barely on speaking terms with the first woman I saw because her entire approach was based on telling me everything was okay, even when it was LITERALLY WRITTEN ON THE PIECE OF PAPER IN FRONT OF HER that my result as not under the limit it should have been.

All I want to know is what numbers are good and what numbers aren't but there doesn't seem to be an answer even to that, let alone how to achieve it. I can't take the uncertainty but what I really can't take is the "pat everyone on the head and tell them it's wonderful." I am one of her thousands of patients, I get that she goes home and stops worrying about it, I get that she doesn't, in any real sense, personally care or have any investment in whether I live or die, but I would rather have honesty.

Oh, and yeah, I assume it is still possible for a diabetic to starve to death...

 

[JTL]

What a seriously depressing thread.
Last night I'm surrounded by people eating all manner of things.
Me?
I ate roast beef pork and the scratchings chicken More prawns a little vodka and then a little more then the beef that had been roasted to absolute moist perfection and then some pork dippped in a little of the juices that were flowing.
How and why people carry on living with this depressing mindset is beyond me.
Easier said than done I'm sure but some of you need to pick yourselves up out of the gutter if not for yourselves then for those around you ... loved ones?
Do you have any love left?
I fear the depression can no longer let you go beyond self.
I might have to stay well away from this thread.

 

[NoKindOfSusie]

Loved ones, that's a pretty sick joke. I'm sure I'm a really great prospect, hi nice to meet you by the way I'm permanently sick and will never get well again. I might start sweating and totally embarrass myself at any time. Here look at this it's a scrap of paper soaked in blood.

No I do not have any love and yes you're right it is a mystery why I keep living with this. Too stubborn for my own good I guess.

 

[ickihun]

Loved ones, that's a pretty sick joke. I'm sure I'm a really great prospect, hi nice to meet you by the way I'm permanently sick and will never get well again. I might start sweating and totally embarrass myself at any time. Here look at this it's a scrap of paper soaked in blood.

No I do not have any love and yes you're right it is a mystery why I keep living with this. Too stubborn for my own good I guess.

I may be naive here when I say this but......what does your diabetic team do to help you get better control of your high and low swings?
Have you tried what other type 1s have to control your diabetes or is your hba1c perfect too and your looking for perfection like @ExtremelyW0rried ?

 

[ickihun]

I agree stress doesn't help but I don't think this is stress causing this issue. I've had periods of stress before and I generally run high consistently. This

Its reassuring to know your own body.

Do you feel any better today?

Listen to @donnellysdogs and @catapillar . They have kept me right in the past. We all need a nudge or change now and again.
I'm thinking of you.
You can put this right. For sure.
You're one strong cookie!
I'm privilege to see you post. Keep at their suggestions and remember.......no ones perfect and start liking yourself again hun. You are lovely. Keep at it.