Question about control

[pgcity]

Hiya All
Been diagnosed 5 months now and have been experimenting in the true sense of the word (controling for variables, repeating to test hypothesis etc.) and I have data that shows how I react to most of my meals, activities and time of the month. I have even had an infection and have some data for that too.

I saw my lovely DSN last week and showed her some analysis I have done that show that if I can keep the daily standard deviation under 2 and my max BG in a day under 11, I feel LOADS better in terms of energy levels. This was a real eureka moment for me but my DSN does not think this is desirable (or possible) and it will drive me mad trying.

I must admit I have become a tad obsessive with the testing (up to about 10 times per day) but I am a lot less anxious and I have my own virtual CGM in my head as I can mostly predict what is happening.

My question is. do you agree with my DSN that I have lost the plot or do you think I can get the control I desire?

 

[Copepod]

For myself, I don't test that often now, having gained an understanding of how various situations affect me. Early on (diagnosed 1996, before many web and other technological tools were available), I did test before meals and sometimes 2 hours after, but no need now, unless I eat sometime new or do something unsual, if weather is unusual or if I'm feeling like I have an infection / stress etc.

So, these days, I generally test before each meal (but not always before midday meal if I'm having a very predictable day) and before bed and before driving, before physical activity etc. Probably average of 3 to 5 times a day.

For me, that gives me more feeling of well being, as it allows me time off from diabetes. And I don't like using too many resources, although please note I'm not telling anyone else what to do / how much to use.

If I were still in honeymoon phase, I would probably have at least one day a week of intensive testing, but other days of less testing regime.

 

[trophywench]

Well I'm kinda with you and I'm kinda with her.

Thing with diabetes is; it's a moveable feast. By which I mean just because you feel you have a complete handle on the situation now (which I'd kinda query, I mean how often are you actually IN double figures? 😱 ) when stuff changes - eg the weather or because there's an R in the month or the moon's in Aquarius or anything else and often for no apparent reason at all - then you won't have a handle on it and if you've convinced yourself you have perfect control you are gonna potentially get an awfully traumatic shock.

Most of us just don't have THAT much time to spend on our diabetes every day for the next 3-score years and ten - though at times we have to - and we probably resent that when it just changes for no reason you can put your finger on - because it interferes with our Real Lives.

But at first, or when there's a reason - like we're checking our basals or we are ill or pregnant - then yes we do it. And our DSN's understand that and encourage us to do it .... WHEN we need to.

I know someone who is an analyst, by nature and by trade, she positively thrives on data and kinda needs the security of seeing it in black and white - even when it only confirms her instinct to do 'whatever' about it - and even she doesn't spend that much time day to day, because she can relax knowing that she will spot glitches pdq even by NOT testing mega times daily, in the general run of things.

Could you not analyse the readings you have taken, and use that info as a basis to inform yourself which tests you could have done without?

I probably haven't put that very well; I think the readings you get in the first year after diagnosis are probably not what the rest of your life will be based on anyway - are you 100% certain that all your beta cells dead yet, anyway?

Now about those double figures, can we help you at all with eliminating any of them?

 

[everydayupsanddowns]

I'm not sure that I do agree with your DSN. I don't think it's impossible to get that level of control, for days or perhaps a week at a time. But my experience is that you cannot expect these times to last long. They feel amazing while they happen, but a person putting in just as much work and effort will not necessarily see the same level of success a month down the line because the things we control: dose, carbs, exercise etc are only part of the equation.

Be mindful if you think you are becoming a bit obsessed (though ive been testing 6-8+ times a day for a few years now). Enjoy successes while they last, but don't be hard on yourself when the goalposts move - as they surely will.

 

[Copepod]

As my diabetes team know that I work in data analysis (sometimes, but always on short contracts of a few months to a year), they have said "you obviously like figures", which is true, but I don't want to spend my free time on diabetes figures. Still, I get reasonable results (HbA1c) and once in a while write detailed figures for 2 weeks or so, so we're all happy 🙂

 

[pgcity]

Ta for the comments.

I have not got anywhere near the kind of control that I described but I'm not using all the tools at my disposal yet (timing of injections, corrections and consideration of GI, fat content) so I am hopeful I can get better. The goalposts have moved a few times too. My estimate of my HBA1c is about 7.3 (was 8.8 at diagnosis) with all this effort.

How do people get fab HBA1c's in the 6's without the obsessive checking? Is it luck or do you just 'feel' whether you are high or low?

 

[margie]

Everyone is different. I remember a DSN saying that they had some patients who could accurately predict the BMs. They would say I am 12.2 and sure enough the test would come back close to it.

It sounds like your DSN is concerned that the testing and analysis is becoming an obsession.

Try to find a balance between alleviating your anxiety and getting the data you want to improve your control.

 

[pgcity]

OK. I expect I am a little obsessed and I have loads of fancy stats and graphs to go with my little project. I am only testing when I am going to use the data (see how well I matched the carbs etc.)

Today I tested when I woke up, before and after every meal and when I felt a bit wonky at 4.9. I will also test before I go to bed. Perhaps when I have more confidence and I get the answers I expect I will be able to stop some of the tests.

If I didnt feel so tired and foggy when ot of range it wouldn't be so bad but I'm worried about losing my job as I am still not back to normal duties.

 

[trophywench]

Do you know what? - I wish you would R E L A X. If you stress, it just sends your BG ever higher.

What do you do for fun? - go and do it, please! 🙂

 

[margie]

OK. I expect I am a little obsessed and I have loads of fancy stats and graphs to go with my little project. I am only testing when I am going to use the data (see how well I matched the carbs etc.)

Today I tested when I woke up, before and after every meal and when I felt a bit wonky at 4.9. I will also test before I go to bed. Perhaps when I have more confidence and I get the answers I expect I will be able to stop some of the tests.

If I didnt feel so tired and foggy when ot of range it wouldn't be so bad but I'm worried about losing my job as I am still not back to normal duties.

From this post it sounds like your diabetes is causing you anxiety - you are afraid it could cause you to lose your job.

If you haven't done so tell your HR department of your diabetes. You may not feel it is a disability but it is covered by the DDA.

Once they are aware then they are obliged to make reasonable adjustments for you.

Many people manage to work with diabetes.

Many clinics have numbers of counsellors who can talk to people newly diagnosed and help them come to terms with their anxieties about diabetes. If you think something like this would help - then contact your clinic and see if they can give you a number or alternately speak to your GP.

 

[pgcity]

Do you know what? - I wish you would R E L A X. If you stress, it just sends your BG ever higher.

What do you do for fun? - go and do it, please! 🙂

You're absolutely right but after just about getting throgh a day at work I'm shattered heence me hoping to get better control. Hopefully things will improve soon.

 

[pgcity]

From this post it sounds like your diabetes is causing you anxiety - you are afraid it could cause you to lose your job.

If you haven't done so tell your HR department of your diabetes. You may not feel it is a disability but it is covered by the DDA.

Once they are aware then they are obliged to make reasonable adjustments for you.

Many people manage to work with diabetes.

Many clinics have numbers of counsellors who can talk to people newly diagnosed and help them come to terms with their anxieties about diabetes. If you think something like this would help - then contact your clinic and see if they can give you a number or alternately speak to your GP.

Thanks for the wise words. Work have been fab so far and I am on a phased return but it is frustrating as I am struggling and am nowhere near normal for me. I really love my job and would hate to have to change it.

I am on a waiting list to see the counsellor so I can get help adjusting to the new me. I did like the old me better....

 

[Northerner]

OK. I expect I am a little obsessed and I have loads of fancy stats and graphs to go with my little project. I am only testing when I am going to use the data (see how well I matched the carbs etc.)

Today I tested when I woke up, before and after every meal and when I felt a bit wonky at 4.9. I will also test before I go to bed. Perhaps when I have more confidence and I get the answers I expect I will be able to stop some of the tests.

If I didnt feel so tired and foggy when ot of range it wouldn't be so bad but I'm worried about losing my job as I am still not back to normal duties.

You're not much different to what I was like 5-6 months in, although I probably didn't test quite as much. I didn't really think that I was obsessed, just that it was important to me to understand what was going on and how best to manage it. I have had HbA1c's in the 5s practically since diagnosis, although my recent ones are due to far fewer hypos and much better control than those early days. Fro mwhat you have said, you are heading in a similar direction - your next steps are the fine-tuning 'tools', which is where I was able to make improvements too 🙂 My SD is also well below 2. My average number of daily tests since diagnosis is just above 6 🙂

 

[pgcity]

You're not much different to what I was like 5-6 months in, although I probably didn't test quite as much. I didn't really think that I was obsessed, just that it was important to me to understand what was going on and how best to manage it. I have had HbA1c's in the 5s practically since diagnosis, although my recent ones are due to far fewer hypos and much better control than those early days. Fro mwhat you have said, you are heading in a similar direction - your next steps are the fine-tuning 'tools', which is where I was able to make improvements too 🙂 My SD is also well below 2. My average number of daily tests since diagnosis is just above 6 🙂

Its good to know its possible. Thanks for your input.

 

[eeyore]

I have only been diagnosed for 4.5 months. I test 6 times a day with the odd extra test if im doing something different. I have good weeks and bad weeks, the bad which could be conected to my period but its still early to spot a complete pattern. I have a large variety of meal options but they are not to exteme so I generally know how my body will react, but then sometimes im thrown a curved ball. The nurse at the hospital said it would take a year to get good control so dont be to hard on yourself. I was lucky at work, they were patient and know I always give 100% so when I need a bit of time to test/snack it is no issue. Can you have another chat to your boss?

 

[pgcity]

I have only been diagnosed for 4.5 months. I test 6 times a day with the odd extra test if im doing something different. I have good weeks and bad weeks, the bad which could be conected to my period but its still early to spot a complete pattern. I have a large variety of meal options but they are not to exteme so I generally know how my body will react, but then sometimes im thrown a curved ball. The nurse at the hospital said it would take a year to get good control so dont be to hard on yourself. I was lucky at work, they were patient and know I always give 100% so when I need a bit of time to test/snack it is no issue. Can you have another chat to your boss?

Thanks for taking the time to reply. I am honoured to read your first post. Sounds like I need to have a word with myself and give myself more time.

 

[Copepod]

Welcome Eeyore. Please introduce yourself by starting a thread in Newbies section, if you want to. And join in any other places, too. 🙂

 

[everydayupsanddowns]

Thanks for taking the time to reply. I am honoured to read your first post. Sounds like I need to have a word with myself and give myself more time.

Depending on how your own body is coming to terms with D (and everyone is different) you might expect many months (sometimes years) of slightly moving goalposts as the remainder of your pancreatic function sputters and fades away (the honeymoon period).

I commend you on your enthusiasm to understand exactly how this works for you, but it does us all good to realise that sometimes D will just do its own thing and we just have to keep on trying to to the best we can with whatever the 'rules' appear to be that week 🙄