Au secours! I'm frustrated to the max!

[te kaihau]

I will try and not make this sound like a rant although it's all I want to do lately. What I'm after are some encouraging words and advice... if you read all this!

My sugars have always been a complete mess since I was diagnosed over 10 years ago, but over the past 1-2 years I've tried to really kick diabetes in the front teeth (after maturing as a young man I guess!). I'm exercising daily (swimming, running, light sports), testing my levels often, avoiding certain foods that tend to wreak havoc with me (porridge, wheat-bix, BISCUITS) and doing all the basic recommended things doctors tell you (changing my needles after every use, injecting on different parts of my body, having a healthy enough and regular diet etc.).

But still, things go wrong! Pretty much everyday I make one "bad" move and have a huge mishap. I inject 5 units for 2 pieces of bread for lunch one day and I'm fine, then the next day it's all wrong and my sugars are so high. I can't even think of any other concrete examples. My bad levels just happen. Of course, I sometimes have the naughty day and eat some chocolate I shouldn't (and go slightly high 50% of the time), but that's not where I struggle. I have difficulty with the general day-to-day management of diabetes.

What is it? Is it all the coffee I drink? Am I not supposed to eat carbs as a diabetic? I don't exercise enough? I have to eat the same meal at the same times every single day for the rest of my life and swim the same amount of lengths at the pool? Otherwise I'm at a loss. There are just so many little things I do that swerve me off the road and make me crash into high or low blood sugars. It's not as if I'm missing injection shots, only eating sugar, sitting on the couch all day everyday. I lead a typical active life (not over exercising, not under exercising, eating consistent meals). I don't want to live my whole life like this. Are there any diabetics out there without major issues? That 9 days out of 10 have everything under control? I need hope.

I'm on Humalog and Lantus by the way. Humalog for every meal (typically 3 times a day) and Lantus in the evening (I inject it at 6pm). The same regimen I've always had my whole diabetic life.

On a positive note, I do feel my diabetes management has seen progress the last two years compared to when I was first diagnosed. I feel healthier in my body, fuller of energy, more control. But I still experience the daily mishap and it just pisses me the right off. It's not enough control.

 

[te kaihau]

Probably one thing I could lay to blame: I have no set time for meals (breakfast, lunch or dinner), and eat whenever it feels appropriate. I'm a student so I lack consistent days and eat at varying times for my 3 main meals. Could this be a factor for mismanaged levels?

 

[Daphne917]

Hi @te kaihau welcome to the forum. I'm T2 diet controlled so cannot advise but have tagged @noblehead and @donnellysdogs who are both T1 and should be able to help you

 

[mentat]

Hi te kaihau,


I feel your pain! I know this story from first-hand experience.

Good on you for taking such a pro-active role.

Unfortunately, everyone's body is different. Some people are very sensitive to exercise, some to caffeine, some to stress. Some people have very unstable reactions to exercise, which can either shoot them up or down depending on who-knows-which internal cascade of hormones. Humalog lasts 3 hours in some people, 5 in others.

What I'm getting at is: lose the "follow best practices" mentality and adopt the "what works for my body" mentality. Oh, I know how tough it is to find what works for your body! So I'll give you some ideas.

The most likely reason why eating meals at inconsistent times would cause unstable sugars is that your basal (long acting) levels are inappropriate. Many people have lower basal needs during the day than they do at night. Switching from Lantus to Levemir could help; because Levemir lasts ~12 hours you take it twice a day and thus can control your nighttime and daytime basal levels. Alternatively, an insulin pump allows even finer basal control, and can make it much easier to adapt to exercise.

Caffeine can also have significant effects on your blood sugar. Can you handle cutting it out for a week or two?

Eating a low-carb diet can make diabetes management a LOT easier. I did it at one point; my insulin needs dropped over 60% and with smaller dosages, errors are smaller.

I never did figure out why my sugars were so variable, but getting a CGM was life-changing for me. It meant I could go back to a more palatable diet and head off sugar problems much earlier. I pay out of pocket for it because it just makes life so much better.

I was in a distance relationship, as well as teaching and studying, for the first few years of my diagnosis; sometimes I wonder to what extent the travel and the stress made my sugars haywire, the rules always changing. Your sugars could be affected by really hard to measure things like whether you're putting in a lot of hard work or if everything's just coming naturally on a particular day.

If you are often getting the impression there is no "correct" bolus for what you are eating, read about Sugar surfing.

One condition that often causes weird day-to-day sugar variability is gastroparesis (delayed stomach emptying). Hopefully you don't have it, but if you do, you'll want to get diagnosed and get as much support from your doctors as possible.

Remember that the human body is a very complex system, and it may take more than a few days before it falls into a pattern after you change something. This is a massive bummer when trying to figure out what works and what doesn't, but it's important to know.

I have been using intra-muscular injections for a year now as a faster-acting method of insulin delivery. I DON'T advise anyone do this. But it works for me.

If you have any questions or want to chat, feel free to PM me.

 

[noblehead]

Probably one thing I could lay to blame: I have no set time for meals (breakfast, lunch or dinner), and eat whenever it feels appropriate. I'm a student so I lack consistent days and eat at varying times for my 3 main meals. Could this be a factor for mismanaged levels?

Not really, on a basal/bolus insulin regime you don't have to stick to strict meal-times, if your basal insulin is set at the right dose it should hold your bg levels steady in the absence of food.

If your eating out and not eating regular meals where your sure of the carb content then this may explain your irregular bg levels, when your at home and have a set of scales and a book like Crabs & Cals it's much easier to get the carb content right and inject accordingly and keep bg levels within your bg target range.

A good book to read up on type 1 diabetes management is Think Like a Pancreas, last time I looked it was around £12 on Amazon, it's a fantastic read and helped many of us on the forum make sense of our diabetes.

 

[Eldorado]

Hi te kalhau
I think the only predictable thing about diabetes is its unpredictability. I've often thought you could follow exactly the same eating, exercising and injecting pattern two days in a row and one day would be OK and the other wouldn't.
Have you tried using one of the 'smart' BG meters? I've been using the Accuchek Aviva Expert for almost a year and it has made all the difference to my control. I use it in conjunction with MyFitnessPal for the carb counting, as I'm useless at that. Once you've set up the parameters you just need to do the BG test and key in the number of carbs you plan to eat. It calculates the units of insulin and 'remembers' any insulin that may still be in your system, so you avoid that awful stacking effect. My HbA1c is the best it has ever been and I feel more in control of the whole situation. It might be worth a try.

 

[fern000]

hello! I'm a student too and Im also struggling with controlling my BGs especially when I have a long day in school. Just thought I'd let you know youve done a great job by taking the first step to improving your glucose control! The next step isnt easy (I know because I'm still stuck here) but I'm sure that it will get better over time with practice have you tried making records of your sugars, physical activity and food intake to study the effect of various foods on your BGs? I think that might help! dont give up!!

 

[lori s]

I will try and not make this sound like a rant although it's all I want to do lately. What I'm after are some encouraging words and advice... if you read all this!

My sugars have always been a complete mess since I was diagnosed over 10 years ago, but over the past 1-2 years I've tried to really kick diabetes in the front teeth (after maturing as a young man I guess!). I'm exercising daily (swimming, running, light sports), testing my levels often, avoiding certain foods that tend to wreak havoc with me (porridge, wheat-bix, BISCUITS) and doing all the basic recommended things doctors tell you (changing my needles after every use, injecting on different parts of my body, having a healthy enough and regular diet etc.).

But still, things go wrong! Pretty much everyday I make one "bad" move and have a huge mishap. I inject 5 units for 2 pieces of bread for lunch one day and I'm fine, then the next day it's all wrong and my sugars are so high. I can't even think of any other concrete examples. My bad levels just happen. Of course, I sometimes have the naughty day and eat some chocolate I shouldn't (and go slightly high 50% of the time), but that's not where I struggle. I have difficulty with the general day-to-day management of diabetes.

What is it? Is it all the coffee I drink? Am I not supposed to eat carbs as a diabetic? I don't exercise enough? I have to eat the same meal at the same times every single day for the rest of my life and swim the same amount of lengths at the pool? Otherwise I'm at a loss. There are just so many little things I do that swerve me off the road and make me crash into high or low blood sugars. It's not as if I'm missing injection shots, only eating sugar, sitting on the couch all day everyday. I lead a typical active life (not over exercising, not under exercising, eating consistent meals). I don't want to live my whole life like this. Are there any diabetics out there without major issues? That 9 days out of 10 have everything under control? I need hope.

I'm on Humalog and Lantus by the way. Humalog for every meal (typically 3 times a day) and Lantus in the evening (I inject it at 6pm). The same regimen I've always had my whole diabetic life.

On a positive note, I do feel my diabetes management has seen progress the last two years compared to when I was first diagnosed. I feel healthier in my body, fuller of energy, more control. But I still experience the daily mishap and it just pisses me the right off. It's not enough control.

Diabetes is frustrating, no doubt about it. We could eat samething everyday and still have stress/hormones/illness that can throw us into lows and highs. The best advice I can give is stay off the roller coaster no extreme ups and downs and over corrections ..but you have to live your life and not worry about being diabetic perfect. That might be your problem is your over-thinking over correcting and in a constant battle. 5 units Humalog would put me on the floor if all I ate was two pieces of bread LOL. I take Lantus morning and night by the way. I wish you luck ...don't beat yourself up.

 

[lizdeluz]

I read your post straight after you posted it, and then waited ... I didn't want to jump in and say that, after 30 years, I certainly haven't cracked the problem of Type 1. That is the case however. I'm still here though and pretty well on the whole and very much enjoying life. I'm very glad I adopted a low-carb diet a couple of years ago, because, as mentioned above, the seemingly inevitable swings in blood sugar are much reduced by restricting sugar, flour, fruit, grains etc to a very small amount. I agree that I want to live a little, but for me that doesn't include things that make me ill. It does mean that I'm not careful enough about timing of insulin shots. I also grapple with (in no particular order)

• highs after exercise,
• Lantus not lasting long enough,
• forgetting whether I've injected,
• assessing required basal levels,
• properly calculating insulin to carb ratios at different meals,
• in the past, being too busy and fraught, to care about my own health, putting diabetes last -really stupid!
• etc, etc.

Since joining the forum, I've had no end of help from knowledgeable people on here who are wonderful, so stick around and ask for that same help and get the chance to support others too, because we're all in this together.